Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 I have never been a drinker, don't drink coffee or tea, but in 2009 I was having flank pain and since I have a family history of kidney disease amongst the females, they did a CT scan. Now, they had diagnosed a fatty liver about 2 months before, from an ultrasound. The CT scan showed a perfectly healthy, lovely kidney and a liver ravaged by cirrhosis. Huh? Mine too is cryptogenic. They have discovered (via a Kaiser Permanente study) that 1-4 cups of coffee a day can have protective effects on the liver...preventing a fatty liver from developing scar tissue. So, if I had been a BAD Mormon who snuck coffee, instead of a GOOD Mormon who eschewed it completely, I might be in much better shape. Irony. I started bleeding from Esophageal Varices last April and lost over 4 pints of blood internally before I could get Kaiser to fix the problem. The good news is I love the GI Doc who banded my grade 4 varices (Now grade 2!) and he is now my GI guy. I, too, have chronic anemia. My saturation, which SHOULD be around 50%, is 9%. If you look at your nail beds you may see a band of red up by the end of your fingertips (the distal end). That usually denotes Kidney or Liver problems. Your tongue may be whitish from the anemia (mine is). One of the signs of anemia is craving ice. I eat about 25 lbs of ice a week...really! Since iron can harm a damaged liver, I only take a bit, when absolutely necessary. You may also have lots of little broken veins, both on your ankles, and little red spots over your chest back (and I have them on my neck, shoulders and arms, as well.) I went to see a dermatologist a few weeks ago about some skins growths and when she looked at my back she said, " Oh my, I wish my students were here! " Turns out I have them all over my back, too. I have lots of broken veins on my face as well. I have day/night reversal, which means I've become a Vampire.LOL Hey, I need blood, I'm up all night and I go to bed at dawn. And I only get hungry at night (of course that's when I'm up! Duh!). So I " feed " at night, too. Sounds vampirey to me! Took me two years to convince them to give me a pain Rx WITHOUT acetaminophen or Advil in it. And they made me jump through hoops to do it. Right now I have pneumonia (at least I'm pretty sure I do). As an ex hospice nurse I know the symptoms. And in the last 24 hours I've been experiencing horrible liver and spleen pain. The Oxycontin barely touches it. There has been a tiny bit of blood in my sputum, but it got worse over night. They won't let me on the transplant list and I'm only 55. And I have a huge deductible with my insurance and it's a new year so it's full price for everything. Just one bottle of the Oxycontin is well over $200. I guess they're afraid I'm gonna sell it.LOL I rarely post anything, because I so rarely have good news, but my GI Doc assures me that I'm actually doing quite well. He wanted to put me on high blood pressure meds after the bleeding (which is caused by portal hypertension). Since I really can't afford and/or WANT to have another med I told the doc that I would get my blood pressure down. If it wasn't down in a month (from 140/90), or if it were worse, then we'd talk. My blood pressure has not been above 121/83 since. It's usually about 118/80. My advice...for what it's worth: Eat organic...especially fruits/veggies/root veggies. Your liver has to process all those insecticides. Stay mellow...not that easy until you figure out how. Cry if you feel like it. Laugh if you feel like it. Look up the Ezra Protocol online. I found it to be a fairly inexpensive download with lots of good advice. I passed it by my doc and he approved...even the supplements. Find your bliss. I'm religious, so prayer works for me, but find a way to bond with the Universe. Hang in there...I'll add you to my prayer list! Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Bob, at least on this list you will get lots of support. Being birds of a feather we know this road is not an easy one. Please get hold of some funny movies, funny books, etc. and find reasons to laugh. Live each day to the fullest you can, and do not give up. hugs from cyberspace, Jackie (who's husband has cryptogenic cirrhosis) Bad News Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Bob...you go ahead and vent because this is the place to do that...! I admire you for telling us your health issues because it teaches alot of us of what is going on with ourselves as well. I do hope you continue to do so. I will pray for you and hope you will get better. Prayers are miracles...!  ________________________________ To: livercirrhosissupport Sent: Monday, January 23, 2012 3:52 AM Subject: Bad News  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 I've been reading the posts but havent' written. My husband has been falling alot lately. One night this last week he fell 3 times. Falls over backwards and hits his head. He is talking after it, shaky, wont' go in of course, or let me call anyone, just wants to go to bed. 5 years ago he had a swollen abdoman and feet and legs.at that time they said he had cirrohis of the liver, Has lost alot of weight, When they drained 7 liters he weighed 235 lbs. Now he is down to 136. They gave him lactolose when he was released but not on that now and hasn't filled back with fluids. they just did a bladder test and the urine cells came back atypical. Now they want to do a biopsy of the bladder but say they need to do a medical evaluation before he can have that. I' m not sure he's strong enough to go under to have the surgery.  He is so weak, can hardly walk very far and has to sit down, Doesn't have a good color. When he was in the hospital they said he would never get out but he did. I guess I don't know from day to day what will be next. The falls really scare me. It seems they are getting more frequent. What causes these now as he never used to have them. Subject: Re: Bad News To: " livercirrhosissupport " <livercirrhosissupport > Date: Monday, January 23, 2012, 2:12 PM  Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 I " m not used to writing so left out alot. He doesnt' qualify for a liver transplant. Has small kidney stones, gall stones but they dont' seem concerned on those. He can only eat just alittle at a time and even then his stomach hurts him alot. He takes alot of Pepto . He's on 60 mg of morphine 2 times a day and 15mg of morphine as needed during the day.That causes constipation and then he takes milk of magnesia for that. The dr gave him something to take but he thought this worked better Some days he's so loopy and then some days seems fine. He get jerky at times. Will throw his arms out. Sleeps 3/4 of the day it seems. We just had a dr apt and the  blood test actually all look fairly good they said.But I know just looking at him he's not good. I lay with one eye open and one ear at night in case he gets up and will fall or needs something. The Dr never tells us what to expect. This site is so much better to learn what others are going through. Subject: Re: Bad News To: " livercirrhosissupport " <livercirrhosissupport > Date: Monday, January 23, 2012, 2:12 PM  Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Kate By any chance are you Canadian?? Until your post, I have never seen anyone else ever refer to their deductible for prescriptions. Even saying it was a new year... Then again, you mention something like Kaiser and that is not Canadian. I'm confused!! It's really easy to confuse me. ________________________________  I have never been a drinker, don't drink coffee or tea, but in 2009 I was having flank pain and since I have a family history of kidney disease amongst the females, they did a CT scan. Now, they had diagnosed a fatty liver about 2 months before, from an ultrasound. The CT scan showed a perfectly healthy, lovely kidney and a liver ravaged by cirrhosis. Huh? Mine too is cryptogenic. They have discovered (via a Kaiser Permanente study) that 1-4 cups of coffee a day can have protective effects on the liver...preventing a fatty liver from developing scar tissue. So, if I had been a BAD Mormon who snuck coffee, instead of a GOOD Mormon who eschewed it completely, I might be in much better shape. Irony. I started bleeding from Esophageal Varices last April and lost over 4 pints of blood internally before I could get Kaiser to fix the problem. The good news is I love the GI Doc who banded my grade 4 varices (Now grade 2!) and he is now my GI guy. I, too, have chronic anemia. My saturation, which SHOULD be around 50%, is 9%. If you look at your nail beds you may see a band of red up by the end of your fingertips (the distal end). That usually denotes Kidney or Liver problems. Your tongue may be whitish from the anemia (mine is). One of the signs of anemia is craving ice. I eat about 25 lbs of ice a week...really! Since iron can harm a damaged liver, I only take a bit, when absolutely necessary. You may also have lots of little broken veins, both on your ankles, and little red spots over your chest back (and I have them on my neck, shoulders and arms, as well.) I went to see a dermatologist a few weeks ago about some skins growths and when she looked at my back she said, " Oh my, I wish my students were here! " Turns out I have them all over my back, too. I have lots of broken veins on my face as well. I have day/night reversal, which means I've become a Vampire.LOL Hey, I need blood, I'm up all night and I go to bed at dawn. And I only get hungry at night (of course that's when I'm up! Duh!). So I " feed " at night, too. Sounds vampirey to me! Took me two years to convince them to give me a pain Rx WITHOUT acetaminophen or Advil in it. And they made me jump through hoops to do it. Right now I have pneumonia (at least I'm pretty sure I do). As an ex hospice nurse I know the symptoms. And in the last 24 hours I've been experiencing horrible liver and spleen pain. The Oxycontin barely touches it. There has been a tiny bit of blood in my sputum, but it got worse over night. They won't let me on the transplant list and I'm only 55. And I have a huge deductible with my insurance and it's a new year so it's full price for everything. Just one bottle of the Oxycontin is well over $200. I guess they're afraid I'm gonna sell it.LOL I rarely post anything, because I so rarely have good news, but my GI Doc assures me that I'm actually doing quite well. He wanted to put me on high blood pressure meds after the bleeding (which is caused by portal hypertension). Since I really can't afford and/or WANT to have another med I told the doc that I would get my blood pressure down. If it wasn't down in a month (from 140/90), or if it were worse, then we'd talk. My blood pressure has not been above 121/83 since. It's usually about 118/80. My advice...for what it's worth: Eat organic...especially fruits/veggies/root veggies. Your liver has to process all those insecticides. Stay mellow...not that easy until you figure out how. Cry if you feel like it. Laugh if you feel like it. Look up the Ezra Protocol online. I found it to be a fairly inexpensive download with lots of good advice. I passed it by my doc and he approved...even the supplements. Find your bliss. I'm religious, so prayer works for me, but find a way to bond with the Universe. Hang in there...I'll add you to my prayer list! Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 My heart goes out to you Bonnie! I know that you caregivers have it probably worse than the patient. I live alone for the most part and was starting to get very worried about my falls. I know of one time that I knocked myself out and what took place over a space of time, I knew nothing about. I had somehow got myself to my desk and for some brain-dead reason, messaged my mother. By the time that she got my brother to check on me, I was perfectly fine and in bed with my animals, watching TV. Apparently, a stroke can cause the falls; but, my GP didn't find any signs of a stroke. However, the falls were getting to be more and more dangerous, so I asked my GP about them again. This time she sent me to an Ophthalmologist. He has told me that I have almost no distance sight and that I'm falling because I literally can't see my feet in the dusk or dark. Actually, prior to this appointment, I had already taken myself off the road at night. I knew that I was getting dangerous out there and wanted to protect those stupid people that walk at night in dark clothes. Now, I'm sure that there are a whole lot of reasons for falls and I will be just as interested in the answers as you are. I have not had a fall for quite some time now and I'm not as worried about them, since my great-niece moved in with me. Gloria ________________________________  I " m not used to writing so left out alot. He doesnt' qualify for a liver transplant. Has small kidney stones, gall stones but they dont' seem concerned on those. He can only eat just alittle at a time and even then his stomach hurts him alot. He takes alot of Pepto . He's on 60 mg of morphine 2 times a day and 15mg of morphine as needed during the day.That causes constipation and then he takes milk of magnesia for that. The dr gave him something to take but he thought this worked better Some days he's so loopy and then some days seems fine. He get jerky at times. Will throw his arms out. Sleeps 3/4 of the day it seems. We just had a dr apt and the  blood test actually all look fairly good they said.But I know just looking at him he's not good. I lay with one eye open and one ear at night in case he gets up and will fall or needs something. The Dr never tells us what to expect. This site is so much better to learn what others are going through. Subject: Re: Bad News To: " livercirrhosissupport " <livercirrhosissupport > Date: Monday, January 23, 2012, 2:12 PM  Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Yes, it seems so frustrating at times when the Dr just said his blood labs all actually look good. Which I know his body is not good. He never had fallen before but this last 6 months has been doing it more frequently. The worst was at thanksgiving when he fell face first out of the blue. His face was all black and blue, broke his glasses and has false teeth and they broke. Then he went until this last week where he had 3 falls in one night. So not sure what brings them on. He has lost the use of one eye because of a clot over a year ago so does misjudge where things are but that didn't seem to make him fall until lately now. He doesnt' drive anymore. That was hard for him to give that up but he knows himself it's too dangerous .When I told the Dr about his falls she said maybe he's over medicated but didn't change any meds. Seems like it's more tests and different pills and he's slowly getting thinner and hardly eats as it makes him so sick . I'm make something and he'll say that looks so good and eats 2 bites and says i'm full.. Of course he never wants to go in when he falls. Just wants to get into bed. Luckily he hasn't broken any bones.And he talks after he falls so doesn't pass out but is real shaky for awhile. Also have noticed the jerks he does with his arms which he never did before. sometimes they get pretty strong when he throws his arms out and around. hard to see someone who was once so strong and in good health to do nothing but sleep mainly & going downhill. The Dr at the time he told him he had the cirrohis said he would not qualify for a transplant so I knew he was not going to be getting better . But they dont' tell you what all will be happening which this site has been so helpful for as I see what others are writing that he has this happening to him too. Subject: Re: Bad News To: " livercirrhosissupport " <livercirrhosissupport > Date: Monday, January 23, 2012, 2:12 PM  Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Hi Bonnie, I just noticed something in your post. You say he is on morphine. I myself am on morphine and I ran out once and had to go through detox. My limbs had a life of their own.....my arms would jerk and my leg wouldn't stop kicking. I don't know if this is what is causing it but it just caught my attention. If he does run out of morphine.........loperamide hydrochloride which is used for anti diarrhea works wonders for detox symptoms. I wish you both the best. Roni > I " m not used to writing so left out alot. He doesnt' qualify for a > liver transplant. Has small kidney stones, gall stones but they > dont' seem concerned on those. He can only eat just alittle at a > time and even then his stomach hurts him alot. He takes alot of > Pepto . He's on 60 mg of morphine 2 times a day and 15mg of morphine > as needed during the day.That causes constipation and then he takes > milk of magnesia for that. The dr gave him something to take but he > thought this worked better Some days he's so loopy and then some > days seems fine. He get jerky at times. Will throw his arms out. > Sleeps 3/4 of the day it seems. We just had a dr apt and the blood > test actually all look fairly good they said.But I know just looking > at him he's not good. I lay with one eye open and one ear at night > in case he gets up and will fall or needs something. The Dr never > tells us what to expect. This site is so much better to learn what > others are going through. > > > > > Subject: Re: Bad News > To: " livercirrhosissupport " <livercirrhosissupport > > > Date: Monday, January 23, 2012, 2:12 PM > > > > Bob > > In my books, you are allowed to come in and vent your feelings!!! > Can't hold them in so that they become a pressure cooker. One day, > I want to put a short version of my walk with all these health and > family issues, so that I can just refer folks to it. > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > the 1st tx. However, in 2005, at the end of that tx - I was a NR. > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > watched the new drugs coming up the ladder. That were going to > allow me to try and kick the dragon. I figured they would hit the > market until 2011. Well, they are the new drug out there now, since > last spring; but, I'm Canadian and as far as I know they have not > been accepted by every echelon of the red tape here. However, I was > asked to participate in a trial for just these these very drugs in > 2009. Finally, the dragon got caught and mortally wounded. > > However, it left me a parting gift. Liver cancer!! I had a liver > resection in Apr 2010; but, the cancer returned in only 15 months. > I have looked around for some miracle to totally stop the cancer; > but, the only thing offered was a procedure which takes several > times to perfect and in the meantime, spills chemo into my system. > No thanks!!! I've had enough of feeling like somebody has dragged > me through a keyhole several times. Truly, I do not have a desire > to get quantity of life anymore, I want quality for whatever I have > left. > > I don't have to guess, I know how I'm going to die (barring an > accident). I just don't know the end date. However, I try to have > a good and grateful day, every time I wake up. Like today. I'm on > the very west coast of Canada and we had some pretty nasty, back to > back storms hit us. Yet, this morning is an absolutely beautiful > day so far. > > By the way - I was experiencing a lot of falls as well. This time > the Dr sent me to an Ophthalmologist who has told me that my > distance sight is so bad that I literally can not see my feet in the > dusk. I have to go back for 2 more visits and buy some glasses > now. In fact, he told me that if I continued the way I was, he was > obliged to notify Motor Vehicles and they would pull my license. > Also, I have slight tremors that I notice especially if I hold my > arms out and have even had a little difficulty with a cup of whatever. > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > the shakes and how unsteady I am on my feet when I'm walking some > days, you sure would think that I just had my last drink a few hours > ago. > > Hope this helps Bob!!! I only wanted to tell you this, because I do > know how it feels to literally be given the death sentence. For me, > I have a strong spiritual faith to lean on and that is why I am not > afraid. No, I'm not religious, although I have absolutely nothing > to say on how people find a Higher Power. > > Gloria > > ________________________________ > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > of a 18000+ white count and severe rebound tenderness to my > gallbladder. Several gall stones were discovered last week in my > semiannual sonogram. My hepatologist admitted me to the hospital > that day and started me on a course of iv antibiotic that lasted 3 > days before the white count dropped to normal. I had also developed > shaking in my hands to the point I could no longer write and have > had a heck of a time typing on this keyboard. A cbc was done and my > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > infusions. I've had several falls recently. I got a cane to help > with my unsteadyness. > My wife spoke to my hematologist and asked her what my prognosis is. > The doc said that due to my heart problems (double bypass) and the > ongoing anemia plus my age (63), I was not a good candidate for a > transplant. I've been seeing the transplant group since early 2006. > I was told because the damage to my liver, that if I required > anesthesia, that I would not wake up. Therefore, They would not > allow any surgery. Sounds like a death sentence to me. Apparently, I > have been diagnosed with Parkinson's and got a Rx upon discharge > Sunday that will treat the Parkinson's. > I apologize for venting. I had to tell someone who knows what I'm > going through. I don't drink or do drugs and I don't have any > tattoos. My dx is cryptogenic cirrhosis which of course means they > have no idea what caused the cirrhosis. I'll shut up now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 How strong of morphine are you on if I can ask? He was on 30mg 2 times a day plus the 15 mg when needed for pain. He said the pain in his back is so bad that's the only thing that will help. Then she changed that to the 60mg 2 times a day and the 15 mg extra when needed. He really watches those bottles like they are gold and calls to order them so he doesn't run out. He never has run out but I wonder if he's getting too much of a dose. We were just in for his regular apt. and the Dr went over his meds but didn't change it even after she learned of the symptom's. He has been on the 60mg for 6 months but lately is when he started to have falling down and jerking motions with his arms. Thanks for the suggestion. > > > Subject: Re: Bad News > To: " livercirrhosissupport " <livercirrhosissupport > > > Date: Monday, January 23, 2012, 2:12 PM > > > > Bob > > In my books, you are allowed to come in and vent your feelings!!! > Can't hold them in so that they become a pressure cooker. One day, > I want to put a short version of my walk with all these health and > family issues, so that I can just refer folks to it. > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > the 1st tx. However, in 2005, at the end of that tx - I was a NR. > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > watched the new drugs coming up the ladder. That were going to > allow me to try and kick the dragon. I figured they would hit the > market until 2011. Well, they are the new drug out there now, since > last spring; but, I'm Canadian and as far as I know they have not > been accepted by every echelon of the red tape here. However, I was > asked to participate in a trial for just these these very drugs in > 2009. Finally, the dragon got caught and mortally wounded. > > However, it left me a parting gift. Liver cancer!! I had a liver > resection in Apr 2010; but, the cancer returned in only 15 months. > I have looked around for some miracle to totally stop the cancer; > but, the only thing offered was a procedure which takes several > times to perfect and in the meantime, spills chemo into my system. > No thanks!!! I've had enough of feeling like somebody has dragged > me through a keyhole several times. Truly, I do not have a desire > to get quantity of life anymore, I want quality for whatever I have > left. > > I don't have to guess, I know how I'm going to die (barring an > accident). I just don't know the end date. However, I try to have > a good and grateful day, every time I wake up. Like today. I'm on > the very west coast of Canada and we had some pretty nasty, back to > back storms hit us. Yet, this morning is an absolutely beautiful > day so far. > > By the way - I was experiencing a lot of falls as well. This time > the Dr sent me to an Ophthalmologist who has told me that my > distance sight is so bad that I literally can not see my feet in the > dusk. I have to go back for 2 more visits and buy some glasses > now. In fact, he told me that if I continued the way I was, he was > obliged to notify Motor Vehicles and they would pull my license. > Also, I have slight tremors that I notice especially if I hold my > arms out and have even had a little difficulty with a cup of whatever. > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > the shakes and how unsteady I am on my feet when I'm walking some > days, you sure would think that I just had my last drink a few hours > ago. > > Hope this helps Bob!!! I only wanted to tell you this, because I do > know how it feels to literally be given the death sentence. For me, > I have a strong spiritual faith to lean on and that is why I am not > afraid. No, I'm not religious, although I have absolutely nothing > to say on how people find a Higher Power. > > Gloria > > ________________________________ > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > of a 18000+ white count and severe rebound tenderness to my > gallbladder. Several gall stones were discovered last week in my > semiannual sonogram. My hepatologist admitted me to the hospital > that day and started me on a course of iv antibiotic that lasted 3 > days before the white count dropped to normal. I had also developed > shaking in my hands to the point I could no longer write and have > had a heck of a time typing on this keyboard. A cbc was done and my > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > infusions. I've had several falls recently. I got a cane to help > with my unsteadyness. > My wife spoke to my hematologist and asked her what my prognosis is. > The doc said that due to my heart problems (double bypass) and the > ongoing anemia plus my age (63), I was not a good candidate for a > transplant. I've been seeing the transplant group since early 2006. > I was told because the damage to my liver, that if I required > anesthesia, that I would not wake up. Therefore, They would not > allow any surgery. Sounds like a death sentence to me. Apparently, I > have been diagnosed with Parkinson's and got a Rx upon discharge > Sunday that will treat the Parkinson's. > I apologize for venting. I had to tell someone who knows what I'm > going through. I don't drink or do drugs and I don't have any > tattoos. My dx is cryptogenic cirrhosis which of course means they > have no idea what caused the cirrhosis. I'll shut up now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 I'm on 30 mg twice a day. When I ran out, I was only on 15 mg 3x a day. The jerking was so strange to me and didn't know what it was until I looked up morphine detox on internet. Other pain meds never did that to me. Mine was accompanied by horrible diarrhea and I felt worse than I had ever felt in my life. It was total hell. Jerking is definitely a symptom of morphine detox but other things could cause it I guess. Roni > > > How strong of morphine are you on if I can ask? He was on 30mg 2 > times a day plus the 15 mg when needed for pain. He said the pain in > his back is so bad that's the only thing that will help. Then she > changed that to the 60mg 2 times a day and the 15 mg extra when > needed. He really watches those bottles like they are gold and calls > to order them so he doesn't run out. He never has run out but I > wonder if he's getting too much of a dose. We were just in for his > regular apt. and the Dr went over his meds but didn't change it even > after she learned of the symptom's. He has been on the 60mg for 6 > months but lately is when he started to have falling down and > jerking motions with his arms. Thanks for the suggestion. > > > > > > > > Subject: Re: Bad News > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > Date: Monday, January 23, 2012, 2:12 PM > > > > > > > > Bob > > > > In my books, you are allowed to come in and vent your feelings!!! > > Can't hold them in so that they become a pressure cooker. One day, > > I want to put a short version of my walk with all these health and > > family issues, so that I can just refer folks to it. > > > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > > the 1st tx. However, in 2005, at the end of that tx - I was a NR. > > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > > watched the new drugs coming up the ladder. That were going to > > allow me to try and kick the dragon. I figured they would hit the > > market until 2011. Well, they are the new drug out there now, since > > last spring; but, I'm Canadian and as far as I know they have not > > been accepted by every echelon of the red tape here. However, I was > > asked to participate in a trial for just these these very drugs in > > 2009. Finally, the dragon got caught and mortally wounded. > > > > However, it left me a parting gift. Liver cancer!! I had a liver > > resection in Apr 2010; but, the cancer returned in only 15 months. > > I have looked around for some miracle to totally stop the cancer; > > but, the only thing offered was a procedure which takes several > > times to perfect and in the meantime, spills chemo into my system. > > No thanks!!! I've had enough of feeling like somebody has dragged > > me through a keyhole several times. Truly, I do not have a desire > > to get quantity of life anymore, I want quality for whatever I have > > left. > > > > I don't have to guess, I know how I'm going to die (barring an > > accident). I just don't know the end date. However, I try to have > > a good and grateful day, every time I wake up. Like today. I'm on > > the very west coast of Canada and we had some pretty nasty, back to > > back storms hit us. Yet, this morning is an absolutely beautiful > > day so far. > > > > By the way - I was experiencing a lot of falls as well. This time > > the Dr sent me to an Ophthalmologist who has told me that my > > distance sight is so bad that I literally can not see my feet in the > > dusk. I have to go back for 2 more visits and buy some glasses > > now. In fact, he told me that if I continued the way I was, he was > > obliged to notify Motor Vehicles and they would pull my license. > > Also, I have slight tremors that I notice especially if I hold my > > arms out and have even had a little difficulty with a cup of > whatever. > > > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > > the shakes and how unsteady I am on my feet when I'm walking some > > days, you sure would think that I just had my last drink a few hours > > ago. > > > > Hope this helps Bob!!! I only wanted to tell you this, because I do > > know how it feels to literally be given the death sentence. For me, > > I have a strong spiritual faith to lean on and that is why I am not > > afraid. No, I'm not religious, although I have absolutely nothing > > to say on how people find a Higher Power. > > > > Gloria > > > > ________________________________ > > > > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > > of a 18000+ white count and severe rebound tenderness to my > > gallbladder. Several gall stones were discovered last week in my > > semiannual sonogram. My hepatologist admitted me to the hospital > > that day and started me on a course of iv antibiotic that lasted 3 > > days before the white count dropped to normal. I had also developed > > shaking in my hands to the point I could no longer write and have > > had a heck of a time typing on this keyboard. A cbc was done and my > > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > > infusions. I've had several falls recently. I got a cane to help > > with my unsteadyness. > > My wife spoke to my hematologist and asked her what my prognosis is. > > The doc said that due to my heart problems (double bypass) and the > > ongoing anemia plus my age (63), I was not a good candidate for a > > transplant. I've been seeing the transplant group since early 2006. > > I was told because the damage to my liver, that if I required > > anesthesia, that I would not wake up. Therefore, They would not > > allow any surgery. Sounds like a death sentence to me. Apparently, I > > have been diagnosed with Parkinson's and got a Rx upon discharge > > Sunday that will treat the Parkinson's. > > I apologize for venting. I had to tell someone who knows what I'm > > going through. I don't drink or do drugs and I don't have any > > tattoos. My dx is cryptogenic cirrhosis which of course means they > > have no idea what caused the cirrhosis. I'll shut up now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Bonnie One of the things that I learned about my falls, was the possibility of having strokes. A sign of a stroke is when the person speaks and it sounds muddled up. Also, your husband's eye problems could very well be the cause of the falls. It wasn't until this Ophthalmologist told me about my lack of distance site, that something clicked. One time at Christmas 2 yrs ago, I walk out onto our veranda with some guests that I was going to drive home. Well, I stepped off that veranda it was like I was going to walk on air or something. Bruised a rib, along with some other little scrapes, because it hit the cement pretty good. A fall like that will definitely bring on a Fibro attack for some time. I haven't been falling nearly as much lately; but, that is because I actually have slowed down to an old lady pace. It was either that or chance the possibility of knocking myself out again.  Yes, it seems so frustrating at times when the Dr just said his blood labs all actually look good. Which I know his body is not good. He never had fallen before but this last 6 months has been doing it more frequently. The worst was at thanksgiving when he fell face first out of the blue. His face was all black and blue, broke his glasses and has false teeth and they broke. Then he went until this last week where he had 3 falls in one night. So not sure what brings them on. He has lost the use of one eye because of a clot over a year ago so does misjudge where things are but that didn't seem to make him fall until lately now. He doesnt' drive anymore. That was hard for him to give that up but he knows himself it's too dangerous .When I told the Dr about his falls she said maybe he's over medicated but didn't change any meds. Seems like it's more tests and different pills and he's slowly getting thinner and hardly eats as it makes him so sick . I'm make something and he'll say that looks so good and eats 2 bites and says i'm full.. Of course he never wants to go in when he falls. Just wants to get into bed. Luckily he hasn't broken any bones.And he talks after he falls so doesn't pass out but is real shaky for awhile. Also have noticed the jerks he does with his arms which he never did before. sometimes they get pretty strong when he throws his arms out and around. hard to see someone who was once so strong and in good health to do nothing but sleep mainly & going downhill. The Dr at the time he told him he had the cirrohis said he would not qualify for a transplant so I knew he was not going to be getting better . But they dont' tell you what all will be happening which this site has been so helpful for as I see what others are writing that he has this happening to him too. Subject: Re: Bad News To: " livercirrhosissupport " <livercirrhosissupport > Date: Monday, January 23, 2012, 2:12 PM  Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 I don't know why; but, somehow I knew when I was warned about the possibility of liver cancer back in 2009, that it was a signal. So, no matter the reason and most of the time it would be for the Fibro, I would not take any pain meds. I wanted my system to be absolutely squeaky clean for them, when the time came. At that point, I will sure not be worrying about an addiction. Anything like morphine or oxycotin is very addicting. A person would have to detox onlywith the help of their Dr. ________________________________  How strong of morphine are you on if I can ask? He was on 30mg 2 times a day plus the 15 mg when needed for pain. He said the pain in his back is so bad that's the only thing that will help. Then she changed that to the 60mg 2 times a day and the 15 mg extra when needed. He really watches those bottles like they are gold and calls to order them so he doesn't run out. He never has run out but I wonder if he's getting too much of a dose. We were just in for his regular apt. and the Dr went over his meds but didn't change it even after she learned of the symptom's. He has been on the 60mg for 6 months but lately is when he started to have falling down and jerking motions with his arms. Thanks for the suggestion. > > > Subject: Re: Bad News > To: " livercirrhosissupport " <livercirrhosissupport > > > Date: Monday, January 23, 2012, 2:12 PM > > > > Bob > > In my books, you are allowed to come in and vent your feelings!!!   > Can't hold them in so that they become a pressure cooker. One day, > I want to put a short version of my walk with all these health and > family issues, so that I can just refer folks to it. > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > the 1st tx. However, in 2005, at the end of that tx - I was a NR.   > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > watched the new drugs coming up the ladder. That were going to > allow me to try and kick the dragon. I figured they would hit the > market until 2011. Well, they are the new drug out there now, since > last spring; but, I'm Canadian and as far as I know they have not > been accepted by every echelon of the red tape here. However, I was > asked to participate in a trial for just these these very drugs in > 2009. Finally, the dragon got caught and mortally wounded. > > However, it left me a parting gift. Liver cancer!! I had a liver > resection in Apr 2010; but, the cancer returned in only 15 months.   > I have looked around for some miracle to totally stop the cancer; > but, the only thing offered was a procedure which takes several > times to perfect and in the meantime, spills chemo into my system.   > No thanks!!!   I've had enough of feeling like somebody has dragged > me through a keyhole several times. Truly, I do not have a desire > to get quantity of life anymore, I want quality for whatever I have > left. > > I don't have to guess, I know how I'm going to die (barring an > accident). I just don't know the end date. However, I try to have > a good and grateful day, every time I wake up. Like today. I'm on > the very west coast of Canada and we had some pretty nasty, back to > back storms hit us. Yet, this morning is an absolutely beautiful > day so far. > > By the way - I was experiencing a lot of falls as well. This time > the Dr sent me to an Ophthalmologist who has told me that my > distance sight is so bad that I literally can not see my feet in the > dusk. I have to go back for 2 more visits and buy some glasses > now. In fact, he told me that if I continued the way I was, he was > obliged to notify Motor Vehicles and they would pull my license.   > Also, I have slight tremors that I notice especially if I hold my > arms out and have even had a little difficulty with a cup of whatever. > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > the shakes and how unsteady I am on my feet when I'm walking some > days, you sure would think that I just had my last drink a few hours > ago. > > Hope this helps Bob!!! I only wanted to tell you this, because I do > know how it feels to literally be given the death sentence. For me, > I have a strong spiritual faith to lean on and that is why I am not > afraid. No, I'm not religious, although I have absolutely nothing > to say on how people find a Higher Power. > > Gloria > > ________________________________ > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > of a 18000+ white count and severe rebound tenderness to my > gallbladder. Several gall stones were discovered last week in my > semiannual sonogram. My hepatologist admitted me to the hospital > that day and started me on a course of iv antibiotic that lasted 3 > days before the white count dropped to normal. I had also developed > shaking in my hands to the point I could no longer write and have > had a heck of a time typing on this keyboard. A cbc was done and my > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > infusions. I've had several falls recently. I got a cane to help > with my unsteadyness. > My wife spoke to my hematologist and asked her what my prognosis is. > The doc said that due to my heart problems (double bypass) and the > ongoing anemia plus my age (63), I was not a good candidate for a > transplant. I've been seeing the transplant group since early 2006. > I was told because the damage to my liver, that if I required > anesthesia, that I would not wake up. Therefore, They would not > allow any surgery. Sounds like a death sentence to me. Apparently, I > have been diagnosed with Parkinson's and got a Rx upon discharge > Sunday that will treat the Parkinson's. > I apologize for venting. I had to tell someone who knows what I'm > going through. I don't drink or do drugs and I don't have any > tattoos. My dx is cryptogenic cirrhosis which of course means they > have no idea what caused the cirrhosis. I'll shut up now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 I wondered too about mini strokes. He talks okay afterwards, just real shaky for awhile. The Dr did an EKG and that looked okay.  She  is going to send him through some more tests of xrays, another ekg and complete medical evaluation she called it. With the urine sample coming back with the atypical cells they want to see if he is able to under go the biopsy before they would schedule it for his bladder. His judge of distance has been harder now with the loss of the one eye but that happened a year ago and the falls have just started lately now. He'll just be in the middle of the floor and go down. We'll see next week if they find any new answers next week with those tests. He's been under so many tests . Has so many problems with not being able to hardly eat, the small kidney stones, the gall stones, back pain, stomach pain,loss of the one eye, has an aeorta anerysm they have watched for acouple years, and now having trouble urinating and want to do that biopsy on his bladder. Seems like his whole body has problems they keep finding . all on top of the cirrohis. Subject: Re: Bad News To: " livercirrhosissupport " <livercirrhosissupport > Date: Monday, January 23, 2012, 2:12 PM  Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 It will never cease to amaze me, that with all they know about the human body, there is probably that much again that they don't know. Just before Christmas, a fella that I know became a walking, talking miracle. He went to work as usual and suddenly everything was wrong. He had an aneurysm close to his heart break open. Fortunately, they were able to keep him alive in our hospital and then air vaced him out to a city hospital. Just today, he was telling me that they had to bring him back twice. Once before the heli ride and then on the heli because of the height they flew at. Every time I see him post or see him in person, it's like talking to a living miracle. Obviously, God is not done with him yet!! If your husband is anything like my was, I'll bet that he thinks he could have gone on fine, if they didn't find all this wrong with him. My husband died on Christmas Eve 2010 from pneumonia, due to his lung cancer. He kept his cancer from all of us until it was too late to do anything about it. I know that he had to know that he had it, because his Dad suffered and died with it. Well, he got to leave this world in the way that he really wanted. In his sleep. ________________________________  I wondered too about mini strokes. He talks okay afterwards, just real shaky for awhile. The Dr did an EKG and that looked okay.  She  is going to send him through some more tests of xrays, another ekg and complete medical evaluation she called it. With the urine sample coming back with the atypical cells they want to see if he is able to under go the biopsy before they would schedule it for his bladder. His judge of distance has been harder now with the loss of the one eye but that happened a year ago and the falls have just started lately now. He'll just be in the middle of the floor and go down. We'll see next week if they find any new answers next week with those tests. He's been under so many tests . Has so many problems with not being able to hardly eat, the small kidney stones, the gall stones, back pain, stomach pain,loss of the one eye, has an aeorta anerysm they have watched for acouple years, and now having trouble urinating and want to do that biopsy on his bladder. Seems like his whole body has problems they keep finding . all on top of the cirrohis. Subject: Re: Bad News To: " livercirrhosissupport " <livercirrhosissupport > Date: Monday, January 23, 2012, 2:12 PM  Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 I think maybe the jerking is from the morphine but instead of running out like you did he may be getting too much. I mentioned that to the dr but she didn' t seem to say much and never changed the amount. And of course he wants it!! And doesn't want to cut it down. With the 60 mg 2 times a day of the slow acting and then popping the fast acting 15mg when needed he's getting alot in his body. He will be sitting and all of a sudden his arms fly out with no control. one day I was driving him back from the Dr and he had been sitting sleeping and all of a sudden his arms started to fly and his legs were kicking and i was afraid i was in arms length to get hit as wild as he was . i hollered at him to wake him up and said whats wrong and then he kind of woke up and said--what was that? did you see that?==so i think he was trying to hit and kick at something he saw in his mind. It was pretty wild for alittle bit. Thought I was going to have to stop until he settled down. He gets so constipated from the morphine so takes alot of milk of magnesia. Maybe then when you got off of it for a time like that it reversed and gave you the diarrhea so bad instead. Dr told him he would be on the morphine for the rest of his life. That has got to be really hard on a persons body too to take it every day. He tried alot of other pain pills and seems like none worked until the morphine and then he had to have that doubled from what he was on too originally. It makes him sleep so much too. . > > > > > > Subject: Re: Bad News > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > Date: Monday, January 23, 2012, 2:12 PM > > > > > > > > Bob > > > > In my books, you are allowed to come in and vent your feelings!!! > > Can't hold them in so that they become a pressure cooker. One day, > > I want to put a short version of my walk with all these health and > > family issues, so that I can just refer folks to it. > > > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > > the 1st tx. However, in 2005, at the end of that tx - I was a NR. > > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > > watched the new drugs coming up the ladder. That were going to > > allow me to try and kick the dragon. I figured they would hit the > > market until 2011. Well, they are the new drug out there now, since > > last spring; but, I'm Canadian and as far as I know they have not > > been accepted by every echelon of the red tape here. However, I was > > asked to participate in a trial for just these these very drugs in > > 2009. Finally, the dragon got caught and mortally wounded. > > > > However, it left me a parting gift. Liver cancer!! I had a liver > > resection in Apr 2010; but, the cancer returned in only 15 months. > > I have looked around for some miracle to totally stop the cancer; > > but, the only thing offered was a procedure which takes several > > times to perfect and in the meantime, spills chemo into my system. > > No thanks!!! I've had enough of feeling like somebody has dragged > > me through a keyhole several times. Truly, I do not have a desire > > to get quantity of life anymore, I want quality for whatever I have > > left. > > > > I don't have to guess, I know how I'm going to die (barring an > > accident). I just don't know the end date. However, I try to have > > a good and grateful day, every time I wake up. Like today. I'm on > > the very west coast of Canada and we had some pretty nasty, back to > > back storms hit us. Yet, this morning is an absolutely beautiful > > day so far. > > > > By the way - I was experiencing a lot of falls as well. This time > > the Dr sent me to an Ophthalmologist who has told me that my > > distance sight is so bad that I literally can not see my feet in the > > dusk. I have to go back for 2 more visits and buy some glasses > > now. In fact, he told me that if I continued the way I was, he was > > obliged to notify Motor Vehicles and they would pull my license. > > Also, I have slight tremors that I notice especially if I hold my > > arms out and have even had a little difficulty with a cup of > whatever. > > > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > > the shakes and how unsteady I am on my feet when I'm walking some > > days, you sure would think that I just had my last drink a few hours > > ago. > > > > Hope this helps Bob!!! I only wanted to tell you this, because I do > > know how it feels to literally be given the death sentence. For me, > > I have a strong spiritual faith to lean on and that is why I am not > > afraid. No, I'm not religious, although I have absolutely nothing > > to say on how people find a Higher Power. > > > > Gloria > > > > ________________________________ > > > > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > > of a 18000+ white count and severe rebound tenderness to my > > gallbladder. Several gall stones were discovered last week in my > > semiannual sonogram. My hepatologist admitted me to the hospital > > that day and started me on a course of iv antibiotic that lasted 3 > > days before the white count dropped to normal. I had also developed > > shaking in my hands to the point I could no longer write and have > > had a heck of a time typing on this keyboard. A cbc was done and my > > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > > infusions. I've had several falls recently. I got a cane to help > > with my unsteadyness. > > My wife spoke to my hematologist and asked her what my prognosis is. > > The doc said that due to my heart problems (double bypass) and the > > ongoing anemia plus my age (63), I was not a good candidate for a > > transplant. I've been seeing the transplant group since early 2006. > > I was told because the damage to my liver, that if I required > > anesthesia, that I would not wake up. Therefore, They would not > > allow any surgery. Sounds like a death sentence to me. Apparently, I > > have been diagnosed with Parkinson's and got a Rx upon discharge > > Sunday that will treat the Parkinson's. > > I apologize for venting. I had to tell someone who knows what I'm > > going through. I don't drink or do drugs and I don't have any > > tattoos. My dx is cryptogenic cirrhosis which of course means they > > have no idea what caused the cirrhosis. I'll shut up now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 I think you are right . They run all the tests and come up with all these things wrong but the more tests the weaker it makes him. I wonder too if he wouldn't go through all of them he would be in better shape. Each one wears him out and he's in bed for acouple days after them. Alot he could live with like the small kidney stones and gall stones they won't do anything with anyway. And now want to start on the biopsy of the bladder. He's not strong enough to go through any chemo or radiation anyway if it does come back positive. He's been really strong from deaths door to now as the drs told me he wouldn't get out of the hospital but he made it and actually was alot better for quite a period time but now it's -all going downhill again. I know he's sure not happy this way as he can't go into town to -eat a meal or shop-which he used to like to do-garden -even go to visit anyplace as he needs to be in bed sleeping. And the Dr was talking about all the yearly tests to start doing all those again. All the ultrasounds, mris, etc. He just moaned! I know he was thinking all we do is tests!! I'm just so tired!!! But he doesn't complain. Sometimes I feel like it's an experiment. If these pills don't work lets try these or if this test didnt' show anything lets try some other ones. The Drs don't know what each persons body will do or respond to or how long you will live. Only God knows when our time is up.  I'm sure your husband did know he had the lung problem which turned out to be cancer long before he told you but wanted to carry that burden himself and not worry you. So sorry to hear he passed. .  Subject: Re: Bad News To: " livercirrhosissupport " <livercirrhosissupport > Date: Monday, January 23, 2012, 2:12 PM  Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 To some degree, I feel fortunate that the Drs and myself do know already what is wrong with my liver. The local Gastro even told me that he doesn't believe in doing any more Ultra Sounds etc, in a case like mine. However, with everything you've been saying about your husband, I feel extremely blessed. So far, I only have my liver to think about. What I do know, is that the sicker the liver gets, the more that one has to sleep. It's not a choice, it just is. So, going in for all these tests will definitely make him much more tired. Then kidney and gall stones just can't be very nice. My husband actually became a very nasty person in Jan 2010. I was just completing Hep C treatment; but, I'd already been told that it was highly likely that I had liver cancer. That was confirmed on the 2nd of Feb. He just continued to be more like his evil twin than himself. I went in for a liver resection in Apr and by the end of May, I brought our travel trailer out to the RV park, for a little peace. Turns out that I never did go back home and his nasty moods never seemed to change much. Sometimes it was very confusing because I would see hints of the man that I married. Then I learned some time after his death, about the lung cancer. That's how I finally could feel a lot of compassion for him. Lung cancer is likely the fastest cancer to go to the brain and I fully believe that is what was happening. I'm trying to find a way that my son and the great-niece that is living with me, know about the encephalopathy that I'm bound to have. People still don't understand my short term memory loss. Sometimes if I hear " Don't you remember, just the other day? " one more time!!! No I don't remember and it's more likely that if it happened years ago, I'll remember it like it was yesterday. The neat thing about it though, is that I have a whole lot of memories of the past, that I'd long forgotten. I swear that my 86 yr old father and I are in a race to see who remembers the least recent stuff. So far, my dad is winning; but, I'm not far behind. Know that my heart is sad for what you are facing! I truly believe that all of this is harder on the caretakers than the patient. We can just forget yesterday; but, you can't. Gloria ________________________________  I think you are right . They run all the tests and come up with all these things wrong but the more tests the weaker it makes him. I wonder too if he wouldn't go through all of them he would be in better shape. Each one wears him out and he's in bed for acouple days after them. Alot he could live with like the small kidney stones and gall stones they won't do anything with anyway. And now want to start on the biopsy of the bladder. He's not strong enough to go through any chemo or radiation anyway if it does come back positive. He's been really strong from deaths door to now as the drs told me he wouldn't get out of the hospital but he made it and actually was alot better for quite a period time but now it's -all going downhill again. I know he's sure not happy this way as he can't go into town to -eat a meal or shop-which he used to like to do-garden -even go to visit anyplace as he needs to be in bed sleeping. And the Dr was talking about all the yearly tests to start doing all those again. All the ultrasounds, mris, etc. He just moaned! I know he was thinking all we do is tests!! I'm just so tired!!! But he doesn't complain. Sometimes I feel like it's an experiment. If these pills don't work lets try these or if this test didnt' show anything lets try some other ones. The Drs don't know what each persons body will do or respond to or how long you will live. Only God knows when our time is up.  I'm sure your husband did know he had the lung problem which turned out to be cancer long before he told you but wanted to carry that burden himself and not worry you. So sorry to hear he passed. .  Subject: Re: Bad News To: " livercirrhosissupport " <livercirrhosissupport > Date: Monday, January 23, 2012, 2:12 PM  Bob In my books, you are allowed to come in and vent your feelings!!! Can't hold them in so that they become a pressure cooker. One day, I want to put a short version of my walk with all these health and family issues, so that I can just refer folks to it. Anyway, I learned in 2002 that I had this Hep C. In 2004, I began the 1st tx. However, in 2005, at the end of that tx - I was a NR. For the following 3-1/2 yrssometimes I worried a bit; but, mostly I watched the new drugs coming up the ladder. That were going to allow me to try and kick the dragon. I figured they would hit the market until 2011. Well, they are the new drug out there now, since last spring; but, I'm Canadian and as far as I know they have not been accepted by every echelon of the red tape here. However, I was asked to participate in a trial for just these these very drugs in 2009. Finally, the dragon got caught and mortally wounded. However, it left me a parting gift. Liver cancer!! I had a liver resection in Apr 2010; but, the cancer returned in only 15 months. I have looked around for some miracle to totally stop the cancer; but, the only thing offered was a procedure which takes several times to perfect and in the meantime, spills chemo into my system. No thanks!!!  I've had enough of feeling like somebody has dragged me through a keyhole several times. Truly, I do not have a desire to get quantity of life anymore, I want quality for whatever I have left. I don't have to guess, I know how I'm going to die (barring an accident). I just don't know the end date. However, I try to have a good and grateful day, every time I wake up. Like today. I'm on the very west coast of Canada and we had some pretty nasty, back to back storms hit us. Yet, this morning is an absolutely beautiful day so far. By the way - I was experiencing a lot of falls as well. This time the Dr sent me to an Ophthalmologist who has told me that my distance sight is so bad that I literally can not see my feet in the dusk. I have to go back for 2 more visits and buy some glasses now. In fact, he told me that if I continued the way I was, he was obliged to notify Motor Vehicles and they would pull my license. Also, I have slight tremors that I notice especially if I hold my arms out and have even had a little difficulty with a cup of whatever. Nope - I'm not a drunk. Sobered up a long time ago. But, between the shakes and how unsteady I am on my feet when I'm walking some days, you sure would think that I just had my last drink a few hours ago. Hope this helps Bob!!! I only wanted to tell you this, because I do know how it feels to literally be given the death sentence. For me, I have a strong spiritual faith to lean on and that is why I am not afraid. No, I'm not religious, although I have absolutely nothing to say on how people find a Higher Power. Gloria ________________________________  Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because of a 18000+ white count and severe rebound tenderness to my gallbladder. Several gall stones were discovered last week in my semiannual sonogram. My hepatologist admitted me to the hospital that day and started me on a course of iv antibiotic that lasted 3 days before the white count dropped to normal. I had also developed shaking in my hands to the point I could no longer write and have had a heck of a time typing on this keyboard. A cbc was done and my hemaglobin was 8.5. I have chronic anemia and have had 16 iron infusions. I've had several falls recently. I got a cane to help with my unsteadyness. My wife spoke to my hematologist and asked her what my prognosis is. The doc said that due to my heart problems (double bypass) and the ongoing anemia plus my age (63), I was not a good candidate for a transplant. I've been seeing the transplant group since early 2006. I was told because the damage to my liver, that if I required anesthesia, that I would not wake up. Therefore, They would not allow any surgery. Sounds like a death sentence to me. Apparently, I have been diagnosed with Parkinson's and got a Rx upon discharge Sunday that will treat the Parkinson's. I apologize for venting. I had to tell someone who knows what I'm going through. I don't drink or do drugs and I don't have any tattoos. My dx is cryptogenic cirrhosis which of course means they have no idea what caused the cirrhosis. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2012 Report Share Posted January 25, 2012 Dear Bonnie and Roni, both Sharon and I have jerks like you describe. The doctor calls them " clonic jerks " . Here is a section I copied from the wikipedia page in case you don't want to read the whole page. " Jerks of muscle groups, much of the body, or a series in rapid succession which results in the person jerking bolt upright from a more relaxed sitting position is sometimes seen in ambulatory patients being treated with high doses of morphine, hydromorphone and similar drugs " . Here is the link to the page where I got this. http://en.wikipedia.org/wiki/Myoclonus A friend of ours who has Chiari malformation like Sharon has them, and actually endded up with all day long seisures. Hers are from brain stem injury like Sharon's. Love, Bobby ________________________________ To: livercirrhosissupport Sent: Tuesday, January 24, 2012 12:43 PM Subject: Re: Bad News I'm on 30 mg twice a day. When I ran out, I was only on 15 mg 3x a day. The jerking was so strange to me and didn't know what it was until I looked up morphine detox on internet. Other pain meds never did that to me. Mine was accompanied by horrible diarrhea and I felt worse than I had ever felt in my life. It was total hell. Jerking is definitely a symptom of morphine detox but other things could cause it I guess. Roni > > > How strong of morphine are you on if I can ask? He was on 30mg 2 > times a day plus the 15 mg when needed for pain. He said the pain in > his back is so bad that's the only thing that will help. Then she > changed that to the 60mg 2 times a day and the 15 mg extra when > needed. He really watches those bottles like they are gold and calls > to order them so he doesn't run out. He never has run out but I > wonder if he's getting too much of a dose. We were just in for his > regular apt. and the Dr went over his meds but didn't change it even > after she learned of the symptom's. He has been on the 60mg for 6 > months but lately is when he started to have falling down and > jerking motions with his arms. Thanks for the suggestion. > > > > > > > > Subject: Re: Bad News > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > Date: Monday, January 23, 2012, 2:12 PM > > > > > > > > Bob > > > > In my books, you are allowed to come in and vent your feelings!!! > > Can't hold them in so that they become a pressure cooker. One day, > > I want to put a short version of my walk with all these health and > > family issues, so that I can just refer folks to it. > > > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > > the 1st tx. However, in 2005, at the end of that tx - I was a NR. > > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > > watched the new drugs coming up the ladder. That were going to > > allow me to try and kick the dragon. I figured they would hit the > > market until 2011. Well, they are the new drug out there now, since > > last spring; but, I'm Canadian and as far as I know they have not > > been accepted by every echelon of the red tape here. However, I was > > asked to participate in a trial for just these these very drugs in > > 2009. Finally, the dragon got caught and mortally wounded. > > > > However, it left me a parting gift. Liver cancer!! I had a liver > > resection in Apr 2010; but, the cancer returned in only 15 months. > > I have looked around for some miracle to totally stop the cancer; > > but, the only thing offered was a procedure which takes several > > times to perfect and in the meantime, spills chemo into my system. > > No thanks!!! I've had enough of feeling like somebody has dragged > > me through a keyhole several times. Truly, I do not have a desire > > to get quantity of life anymore, I want quality for whatever I have > > left. > > > > I don't have to guess, I know how I'm going to die (barring an > > accident). I just don't know the end date. However, I try to have > > a good and grateful day, every time I wake up. Like today. I'm on > > the very west coast of Canada and we had some pretty nasty, back to > > back storms hit us. Yet, this morning is an absolutely beautiful > > day so far. > > > > By the way - I was experiencing a lot of falls as well. This time > > the Dr sent me to an Ophthalmologist who has told me that my > > distance sight is so bad that I literally can not see my feet in the > > dusk. I have to go back for 2 more visits and buy some glasses > > now. In fact, he told me that if I continued the way I was, he was > > obliged to notify Motor Vehicles and they would pull my license. > > Also, I have slight tremors that I notice especially if I hold my > > arms out and have even had a little difficulty with a cup of > whatever. > > > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > > the shakes and how unsteady I am on my feet when I'm walking some > > days, you sure would think that I just had my last drink a few hours > > ago. > > > > Hope this helps Bob!!! I only wanted to tell you this, because I do > > know how it feels to literally be given the death sentence. For me, > > I have a strong spiritual faith to lean on and that is why I am not > > afraid. No, I'm not religious, although I have absolutely nothing > > to say on how people find a Higher Power. > > > > Gloria > > > > ________________________________ > > > > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > > of a 18000+ white count and severe rebound tenderness to my > > gallbladder. Several gall stones were discovered last week in my > > semiannual sonogram. My hepatologist admitted me to the hospital > > that day and started me on a course of iv antibiotic that lasted 3 > > days before the white count dropped to normal. I had also developed > > shaking in my hands to the point I could no longer write and have > > had a heck of a time typing on this keyboard. A cbc was done and my > > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > > infusions. I've had several falls recently. I got a cane to help > > with my unsteadyness. > > My wife spoke to my hematologist and asked her what my prognosis is. > > The doc said that due to my heart problems (double bypass) and the > > ongoing anemia plus my age (63), I was not a good candidate for a > > transplant. I've been seeing the transplant group since early 2006. > > I was told because the damage to my liver, that if I required > > anesthesia, that I would not wake up. Therefore, They would not > > allow any surgery. Sounds like a death sentence to me. Apparently, I > > have been diagnosed with Parkinson's and got a Rx upon discharge > > Sunday that will treat the Parkinson's. > > I apologize for venting. I had to tell someone who knows what I'm > > going through. I don't drink or do drugs and I don't have any > > tattoos. My dx is cryptogenic cirrhosis which of course means they > > have no idea what caused the cirrhosis. I'll shut up now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2012 Report Share Posted January 26, 2012 Dear Gloria, I have heard you say this same thing several times now, and want to get this off my chest. (don't you DARE take this personally and get mad at me :-} ) This is from wikipedia, but verified through the pain department at Colorado University hospital. I am cutting and pasting now- Morphine is a potentially highly addictive substance. It can cause psychological dependence and physical dependence as well as tolerance, with an addiction potential identical to that of heroin. When used illicitly, a very serious narcotic habit can develop in a matter of weeks, whereas iatrogenic morphine addiction rates have, according to a number of studies, remained nearly constant at one case in 150 to 200 for at least two centuries. Merriam-Webster's Dictionary " Iatrogenic " =induced inadvertently by a physician or surgeon or by medical treatment or diagnostic procedures. Iatrogenic means " the patient accidentally became addicted while being treated by as doctor " . When taken as directed, morphine is fairly safe. The addiction rates from legitimate use have stayed constant for 200 YEARS!!!! Between one half and one percent is sure a hell of a lot lower than CNN wants you to believe. The big drug companies shudder at drugs made from poppies (flowers) which work so well and do all they can to keep us ignorant and fearful. Remember, the key word here is " as directed " . When a patient follows the doctors directions, and has actual pain, the accidental addiction rate is one case in one hundred fifty to two hundred. CU puts it at one in one thousand. Morphine and oxycontin are very addictive if not taken according to a physicians instructions. The reason for this is very simple. Many people experience a feeling of euphoria when given a dose of opioid medication. But , that feeling soon dissappears. This is a known fact. In the world of illicit drugs, this is known as " tolorance " . But tolorance only really happens if you are taking the drug for recreational purposes. Then the person take more drug in order to achieve the euphoria (high)again. Then the feeling dissappears again. and again and again. Then the person is addicted. Anyone who takes pain medication as directed will tell you, the euphoria goes away, and never comes back. Certainly, even if if it does come back in certain people, it is those who go in search of it will find themselves with a 200 dollar a day heroin habit in no time at all. Alcohol is much the same. Except that there is no real medicinal use for it, and it is toxic as hell. Morphine is non toxic, technically, and has a very important use, but people abusing it always manage to make it look so so much more evil than alcohol, which is actually so so much more evil than morphine. Of course no one will agree with that statement unless they have had thier best friend in the world beg and cry out for more pain medicine because their organs were shutting down, and she was dying. remember, you will be sober as long as you are always true to yourself. Liver cancer is no picnic. No suffering,Gloria. Love,your friend Bobby ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, January 24, 2012 9:15 PM Subject: Re: Bad News  I don't know why; but, somehow I knew when I was warned about the possibility of liver cancer back in 2009, that it was a signal. So, no matter the reason and most of the time it would be for the Fibro, I would not take any pain meds. I wanted my system to be absolutely squeaky clean for them, when the time came. At that point, I will sure not be worrying about an addiction. Anything like morphine or oxycotin is very addicting. A person would have to detox onlywith the help of their Dr. ________________________________  How strong of morphine are you on if I can ask? He was on 30mg 2 times a day plus the 15 mg when needed for pain. He said the pain in his back is so bad that's the only thing that will help. Then she changed that to the 60mg 2 times a day and the 15 mg extra when needed. He really watches those bottles like they are gold and calls to order them so he doesn't run out. He never has run out but I wonder if he's getting too much of a dose. We were just in for his regular apt. and the Dr went over his meds but didn't change it even after she learned of the symptom's. He has been on the 60mg for 6 months but lately is when he started to have falling down and jerking motions with his arms. Thanks for the suggestion. > > > Subject: Re: Bad News > To: " livercirrhosissupport " <livercirrhosissupport > > > Date: Monday, January 23, 2012, 2:12 PM > > > > Bob > > In my books, you are allowed to come in and vent your feelings!!!   > Can't hold them in so that they become a pressure cooker. One day, > I want to put a short version of my walk with all these health and > family issues, so that I can just refer folks to it. > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > the 1st tx. However, in 2005, at the end of that tx - I was a NR.   > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > watched the new drugs coming up the ladder. That were going to > allow me to try and kick the dragon. I figured they would hit the > market until 2011. Well, they are the new drug out there now, since > last spring; but, I'm Canadian and as far as I know they have not > been accepted by every echelon of the red tape here. However, I was > asked to participate in a trial for just these these very drugs in > 2009. Finally, the dragon got caught and mortally wounded. > > However, it left me a parting gift. Liver cancer!! I had a liver > resection in Apr 2010; but, the cancer returned in only 15 months.   > I have looked around for some miracle to totally stop the cancer; > but, the only thing offered was a procedure which takes several > times to perfect and in the meantime, spills chemo into my system.   > No thanks!!!   I've had enough of feeling like somebody has dragged > me through a keyhole several times. Truly, I do not have a desire > to get quantity of life anymore, I want quality for whatever I have > left. > > I don't have to guess, I know how I'm going to die (barring an > accident). I just don't know the end date. However, I try to have > a good and grateful day, every time I wake up. Like today. I'm on > the very west coast of Canada and we had some pretty nasty, back to > back storms hit us. Yet, this morning is an absolutely beautiful > day so far. > > By the way - I was experiencing a lot of falls as well. This time > the Dr sent me to an Ophthalmologist who has told me that my > distance sight is so bad that I literally can not see my feet in the > dusk. I have to go back for 2 more visits and buy some glasses > now. In fact, he told me that if I continued the way I was, he was > obliged to notify Motor Vehicles and they would pull my license.   > Also, I have slight tremors that I notice especially if I hold my > arms out and have even had a little difficulty with a cup of whatever. > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > the shakes and how unsteady I am on my feet when I'm walking some > days, you sure would think that I just had my last drink a few hours > ago. > > Hope this helps Bob!!! I only wanted to tell you this, because I do > know how it feels to literally be given the death sentence. For me, > I have a strong spiritual faith to lean on and that is why I am not > afraid. No, I'm not religious, although I have absolutely nothing > to say on how people find a Higher Power. > > Gloria > > ________________________________ > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > of a 18000+ white count and severe rebound tenderness to my > gallbladder. Several gall stones were discovered last week in my > semiannual sonogram. My hepatologist admitted me to the hospital > that day and started me on a course of iv antibiotic that lasted 3 > days before the white count dropped to normal. I had also developed > shaking in my hands to the point I could no longer write and have > had a heck of a time typing on this keyboard. A cbc was done and my > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > infusions. I've had several falls recently. I got a cane to help > with my unsteadyness. > My wife spoke to my hematologist and asked her what my prognosis is. > The doc said that due to my heart problems (double bypass) and the > ongoing anemia plus my age (63), I was not a good candidate for a > transplant. I've been seeing the transplant group since early 2006. > I was told because the damage to my liver, that if I required > anesthesia, that I would not wake up. Therefore, They would not > allow any surgery. Sounds like a death sentence to me. Apparently, I > have been diagnosed with Parkinson's and got a Rx upon discharge > Sunday that will treat the Parkinson's. > I apologize for venting. I had to tell someone who knows what I'm > going through. I don't drink or do drugs and I don't have any > tattoos. My dx is cryptogenic cirrhosis which of course means they > have no idea what caused the cirrhosis. I'll shut up now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2012 Report Share Posted January 26, 2012 Bonnie, Does he take Lactulose for the cirrhosis? It's the medication that keeps ammonia down by making you go to bathroom alot. This keeps me from getting constipated from the morphine. Detoxing from morphine is basically detoxing from heroine. It's a horrible thing to go through. It's also dangerous and should be done under a doctor. Sadly, my ex-pharmacist has sent me into detox once and my doctor. I learned I had to find something in case this happens again. Once my pharmacist refused to give me medication even after doctor called it in and another time my pain doctor denied my refill because I had gotten my days mixed up and was a day late for an appointment when the doctor wasn't there. They didn't bother to inform me of this until I called for refill. All of you that have great doctors, you are very lucky. Maybe when he is jerking......he is due for another dose? I'm not a doctor but it wouldn't surprise me if the morphine is causing that particular symptom. Wish you both the best. Roni > I think maybe the jerking is from the morphine but instead of > running out like you did he may be getting too much. I mentioned > that to the dr but she didn' t seem to say much and never changed > the amount. And of course he wants it!! And doesn't want to cut it > down. > With the 60 mg 2 times a day of the slow acting and then popping the > fast acting 15mg when needed he's getting alot in his body. He will > be sitting and all of a sudden his arms fly out with no control. one > day I was driving him back from the Dr and he had been sitting > sleeping and all of a sudden his arms started to fly and his legs > were kicking and i was afraid i was in arms length to get hit as > wild as he was . i hollered at him to wake him up and said whats > wrong and then he kind of woke up and said--what was that? did you > see that?==so i think he was trying to hit and kick at something he > saw in his mind. It was pretty wild for alittle bit. Thought I was > going to have to stop until he settled down. He gets so constipated > from the morphine so takes alot of milk of magnesia. Maybe then > when you got off of it for a time like that it reversed and gave you > the diarrhea so bad instead. Dr told him he would be on the morphine > for the rest of his > life. That has got to be really hard on a persons body too to take > it every day. He tried alot of other pain pills and seems like none > worked until the morphine and then he had to have that doubled from > what he was on too originally. It makes him sleep so much too. . > > > > > > > > > > > Subject: Re: Bad News > > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > > > Date: Monday, January 23, 2012, 2:12 PM > > > > > > > > > > > > Bob > > > > > > In my books, you are allowed to come in and vent your feelings!!! > > > Can't hold them in so that they become a pressure cooker. One > day, > > > I want to put a short version of my walk with all these health and > > > family issues, so that I can just refer folks to it. > > > > > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > > > the 1st tx. However, in 2005, at the end of that tx - I was a NR. > > > For the following 3-1/2 yrssometimes I worried a bit; but, > mostly I > > > watched the new drugs coming up the ladder. That were going to > > > allow me to try and kick the dragon. I figured they would hit the > > > market until 2011. Well, they are the new drug out there now, > since > > > last spring; but, I'm Canadian and as far as I know they have not > > > been accepted by every echelon of the red tape here. However, I > was > > > asked to participate in a trial for just these these very drugs in > > > 2009. Finally, the dragon got caught and mortally wounded. > > > > > > However, it left me a parting gift. Liver cancer!! I had a liver > > > resection in Apr 2010; but, the cancer returned in only 15 months. > > > I have looked around for some miracle to totally stop the cancer; > > > but, the only thing offered was a procedure which takes several > > > times to perfect and in the meantime, spills chemo into my system. > > > No thanks!!! I've had enough of feeling like somebody has > dragged > > > me through a keyhole several times. Truly, I do not have a desire > > > to get quantity of life anymore, I want quality for whatever I > have > > > left. > > > > > > I don't have to guess, I know how I'm going to die (barring an > > > accident). I just don't know the end date. However, I try to > have > > > a good and grateful day, every time I wake up. Like today. I'm > on > > > the very west coast of Canada and we had some pretty nasty, back > to > > > back storms hit us. Yet, this morning is an absolutely beautiful > > > day so far. > > > > > > By the way - I was experiencing a lot of falls as well. This time > > > the Dr sent me to an Ophthalmologist who has told me that my > > > distance sight is so bad that I literally can not see my feet in > the > > > dusk. I have to go back for 2 more visits and buy some glasses > > > now. In fact, he told me that if I continued the way I was, he > was > > > obliged to notify Motor Vehicles and they would pull my license. > > > Also, I have slight tremors that I notice especially if I hold my > > > arms out and have even had a little difficulty with a cup of > > whatever. > > > > > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > > > the shakes and how unsteady I am on my feet when I'm walking some > > > days, you sure would think that I just had my last drink a few > hours > > > ago. > > > > > > Hope this helps Bob!!! I only wanted to tell you this, because > I do > > > know how it feels to literally be given the death sentence. For > me, > > > I have a strong spiritual faith to lean on and that is why I am > not > > > afraid. No, I'm not religious, although I have absolutely nothing > > > to say on how people find a Higher Power. > > > > > > Gloria > > > > > > ________________________________ > > > > > > > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 > because > > > of a 18000+ white count and severe rebound tenderness to my > > > gallbladder. Several gall stones were discovered last week in my > > > semiannual sonogram. My hepatologist admitted me to the hospital > > > that day and started me on a course of iv antibiotic that lasted 3 > > > days before the white count dropped to normal. I had also > developed > > > shaking in my hands to the point I could no longer write and have > > > had a heck of a time typing on this keyboard. A cbc was done and > my > > > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > > > infusions. I've had several falls recently. I got a cane to help > > > with my unsteadyness. > > > My wife spoke to my hematologist and asked her what my prognosis > is. > > > The doc said that due to my heart problems (double bypass) and the > > > ongoing anemia plus my age (63), I was not a good candidate for a > > > transplant. I've been seeing the transplant group since early > 2006. > > > I was told because the damage to my liver, that if I required > > > anesthesia, that I would not wake up. Therefore, They would not > > > allow any surgery. Sounds like a death sentence to me. > Apparently, I > > > have been diagnosed with Parkinson's and got a Rx upon discharge > > > Sunday that will treat the Parkinson's. > > > I apologize for venting. I had to tell someone who knows what I'm > > > going through. I don't drink or do drugs and I don't have any > > > tattoos. My dx is cryptogenic cirrhosis which of course means they > > > have no idea what caused the cirrhosis. I'll shut up now. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2012 Report Share Posted January 26, 2012 Bobby I have no idea why you would have thought that, what you have said would ever upset me. You just opened my eyes to a whole lot of stuff that I did not know. WOW My nature, learned in AA, is that I have an opinion and will share it. In other words, I choose to risk being wrong, rather than be silent. The most wonderful conversations that I have, are when the other person actually shares their own opinion. I've never learned anything from folks that just nod and remain quiet. However, I've even changed my opinion, because someone else was able to make me see the other side. In this case, you are definitely a whole lot more educated about this than I am. I don't know why; but, I've always believed that morphine and then oxy, were addictive. It's great knowing that it is not true. Right now, happily I have no use for either yet; but, will not be turning it down if the time comes. Finally, I agree with you so much about the toxic effects of alcohol. For some time now, I have been watching around me and realize that, so many times, it's actually alcoholics that have chronic of Hep C and great liver damage. They were doing a study over in Vancouver, by giving the Hep C treatment to addicts that have no desire to quit the drugs. They clear with the same percentage as other sufferers. However, can't come close to saying that about alcoholics or even alcoholic/drug addicts. Of course, there aren't many drug addicts that are not alcoholic either. Thanks Bobby - see, I didn't even have to leave my place today, to find out something new. Love Gloria ________________________________  Dear Gloria, I have heard you say this same thing several times now, and want to get this off my chest. (don't you DARE take this personally and get mad at me :-} ) This is from wikipedia, but verified through the pain department at Colorado University hospital. I am cutting and pasting now- Morphine is a potentially highly addictive substance. It can cause psychological dependence and physical dependence as well as tolerance, with an addiction potential identical to that of heroin. When used illicitly, a very serious narcotic habit can develop in a matter of weeks, whereas iatrogenic morphine addiction rates have, according to a number of studies, remained nearly constant at one case in 150 to 200 for at least two centuries. Merriam-Webster's Dictionary " Iatrogenic " =induced inadvertently by a physician or surgeon or by medical treatment or diagnostic procedures. Iatrogenic means " the patient accidentally became addicted while being treated by as doctor " . When taken as directed, morphine is fairly safe. The addiction rates from legitimate use have stayed constant for 200 YEARS!!!! Between one half and one percent is sure a hell of a lot lower than CNN wants you to believe. The big drug companies shudder at drugs made from poppies (flowers) which work so well and do all they can to keep us ignorant and fearful. Remember, the key word here is " as directed " . When a patient follows the doctors directions, and has actual pain, the accidental addiction rate is one case in one hundred fifty to two hundred. CU puts it at one in one thousand. Morphine and oxycontin are very addictive if not taken according to a physicians instructions. The reason for this is very simple. Many people experience a feeling of euphoria when given a dose of opioid medication. But , that feeling soon dissappears. This is a known fact. In the world of illicit drugs, this is known as " tolorance " . But tolorance only really happens if you are taking the drug for recreational purposes. Then the person take more drug in order to achieve the euphoria (high)again. Then the feeling dissappears again. and again and again. Then the person is addicted. Anyone who takes pain medication as directed will tell you, the euphoria goes away, and never comes back. Certainly, even if if it does come back in certain people, it is those who go in search of it will find themselves with a 200 dollar a day heroin habit in no time at all. Alcohol is much the same. Except that there is no real medicinal use for it, and it is toxic as hell. Morphine is non toxic, technically, and has a very important use, but people abusing it always manage to make it look so so much more evil than alcohol, which is actually so so much more evil than morphine. Of course no one will agree with that statement unless they have had thier best friend in the world beg and cry out for more pain medicine because their organs were shutting down, and she was dying. remember, you will be sober as long as you are always true to yourself. Liver cancer is no picnic. No suffering,Gloria. Love,your friend Bobby ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, January 24, 2012 9:15 PM Subject: Re: Bad News  I don't know why; but, somehow I knew when I was warned about the possibility of liver cancer back in 2009, that it was a signal. So, no matter the reason and most of the time it would be for the Fibro, I would not take any pain meds. I wanted my system to be absolutely squeaky clean for them, when the time came. At that point, I will sure not be worrying about an addiction. Anything like morphine or oxycotin is very addicting. A person would have to detox onlywith the help of their Dr. ________________________________  How strong of morphine are you on if I can ask? He was on 30mg 2 times a day plus the 15 mg when needed for pain. He said the pain in his back is so bad that's the only thing that will help. Then she changed that to the 60mg 2 times a day and the 15 mg extra when needed. He really watches those bottles like they are gold and calls to order them so he doesn't run out. He never has run out but I wonder if he's getting too much of a dose. We were just in for his regular apt. and the Dr went over his meds but didn't change it even after she learned of the symptom's. He has been on the 60mg for 6 months but lately is when he started to have falling down and jerking motions with his arms. Thanks for the suggestion. > > > Subject: Re: Bad News > To: " livercirrhosissupport " <livercirrhosissupport > > > Date: Monday, January 23, 2012, 2:12 PM > > > > Bob > > In my books, you are allowed to come in and vent your feelings!!!   > Can't hold them in so that they become a pressure cooker. One day, > I want to put a short version of my walk with all these health and > family issues, so that I can just refer folks to it. > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > the 1st tx. However, in 2005, at the end of that tx - I was a NR.   > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > watched the new drugs coming up the ladder. That were going to > allow me to try and kick the dragon. I figured they would hit the > market until 2011. Well, they are the new drug out there now, since > last spring; but, I'm Canadian and as far as I know they have not > been accepted by every echelon of the red tape here. However, I was > asked to participate in a trial for just these these very drugs in > 2009. Finally, the dragon got caught and mortally wounded. > > However, it left me a parting gift. Liver cancer!! I had a liver > resection in Apr 2010; but, the cancer returned in only 15 months.   > I have looked around for some miracle to totally stop the cancer; > but, the only thing offered was a procedure which takes several > times to perfect and in the meantime, spills chemo into my system.   > No thanks!!!   I've had enough of feeling like somebody has dragged > me through a keyhole several times. Truly, I do not have a desire > to get quantity of life anymore, I want quality for whatever I have > left. > > I don't have to guess, I know how I'm going to die (barring an > accident). I just don't know the end date. However, I try to have > a good and grateful day, every time I wake up. Like today. I'm on > the very west coast of Canada and we had some pretty nasty, back to > back storms hit us. Yet, this morning is an absolutely beautiful > day so far. > > By the way - I was experiencing a lot of falls as well. This time > the Dr sent me to an Ophthalmologist who has told me that my > distance sight is so bad that I literally can not see my feet in the > dusk. I have to go back for 2 more visits and buy some glasses > now. In fact, he told me that if I continued the way I was, he was > obliged to notify Motor Vehicles and they would pull my license.   > Also, I have slight tremors that I notice especially if I hold my > arms out and have even had a little difficulty with a cup of whatever. > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > the shakes and how unsteady I am on my feet when I'm walking some > days, you sure would think that I just had my last drink a few hours > ago. > > Hope this helps Bob!!! I only wanted to tell you this, because I do > know how it feels to literally be given the death sentence. For me, > I have a strong spiritual faith to lean on and that is why I am not > afraid. No, I'm not religious, although I have absolutely nothing > to say on how people find a Higher Power. > > Gloria > > ________________________________ > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > of a 18000+ white count and severe rebound tenderness to my > gallbladder. Several gall stones were discovered last week in my > semiannual sonogram. My hepatologist admitted me to the hospital > that day and started me on a course of iv antibiotic that lasted 3 > days before the white count dropped to normal. I had also developed > shaking in my hands to the point I could no longer write and have > had a heck of a time typing on this keyboard. A cbc was done and my > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > infusions. I've had several falls recently. I got a cane to help > with my unsteadyness. > My wife spoke to my hematologist and asked her what my prognosis is. > The doc said that due to my heart problems (double bypass) and the > ongoing anemia plus my age (63), I was not a good candidate for a > transplant. I've been seeing the transplant group since early 2006. > I was told because the damage to my liver, that if I required > anesthesia, that I would not wake up. Therefore, They would not > allow any surgery. Sounds like a death sentence to me. Apparently, I > have been diagnosed with Parkinson's and got a Rx upon discharge > Sunday that will treat the Parkinson's. > I apologize for venting. I had to tell someone who knows what I'm > going through. I don't drink or do drugs and I don't have any > tattoos. My dx is cryptogenic cirrhosis which of course means they > have no idea what caused the cirrhosis. I'll shut up now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2012 Report Share Posted January 27, 2012 I was worried that I might sound arrogant is all. I am glad you didn.t take offense. I am glad to hear that you sound much more open minded about it than I was when Ardis was in the hospice. I did not want her to be doped up, and unable to say good bye to me. I know it sound so selfish. Plus, I have always been against drugs in general. My whole life I have had this irrational bias. Now I rely on medication myself in order to have any kind of decent life, and my opinion is much changed. By the way, Ardis, despite being opiate naive, and having a 30 mg dose of roxynol, (liquid morphine), (5 mg is a lot for some one not used to it) she was still able to talk to me on her last day, and in her own way, she was able to say good bye. love, Bobby > > > > > > Subject: Re: Bad News > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > Date: Monday, January 23, 2012, 2:12 PM > > > > > > > > Bob > > > > In my books, you are allowed to come in and vent your feelings!!!   > > Can't hold them in so that they become a pressure cooker. One day, > > I want to put a short version of my walk with all these health and > > family issues, so that I can just refer folks to it. > > > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > > the 1st tx. However, in 2005, at the end of that tx - I was a NR.   > > For the following 3-1/2 yrssometimes I worried a bit; but, mostly I > > watched the new drugs coming up the ladder. That were going to > > allow me to try and kick the dragon. I figured they would hit the > > market until 2011. Well, they are the new drug out there now, since > > last spring; but, I'm Canadian and as far as I know they have not > > been accepted by every echelon of the red tape here. However, I was > > asked to participate in a trial for just these these very drugs in > > 2009. Finally, the dragon got caught and mortally wounded. > > > > However, it left me a parting gift. Liver cancer!! I had a liver > > resection in Apr 2010; but, the cancer returned in only 15 months.   > > I have looked around for some miracle to totally stop the cancer; > > but, the only thing offered was a procedure which takes several > > times to perfect and in the meantime, spills chemo into my system.   > > No thanks!!!   I've had enough of feeling like somebody has dragged > > me through a keyhole several times. Truly, I do not have a desire > > to get quantity of life anymore, I want quality for whatever I have > > left. > > > > I don't have to guess, I know how I'm going to die (barring an > > accident). I just don't know the end date. However, I try to have > > a good and grateful day, every time I wake up. Like today. I'm on > > the very west coast of Canada and we had some pretty nasty, back to > > back storms hit us. Yet, this morning is an absolutely beautiful > > day so far. > > > > By the way - I was experiencing a lot of falls as well. This time > > the Dr sent me to an Ophthalmologist who has told me that my > > distance sight is so bad that I literally can not see my feet in the > > dusk. I have to go back for 2 more visits and buy some glasses > > now. In fact, he told me that if I continued the way I was, he was > > obliged to notify Motor Vehicles and they would pull my license.   > > Also, I have slight tremors that I notice especially if I hold my > > arms out and have even had a little difficulty with a cup of whatever. > > > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > > the shakes and how unsteady I am on my feet when I'm walking some > > days, you sure would think that I just had my last drink a few hours > > ago. > > > > Hope this helps Bob!!! I only wanted to tell you this, because I do > > know how it feels to literally be given the death sentence. For me, > > I have a strong spiritual faith to lean on and that is why I am not > > afraid. No, I'm not religious, although I have absolutely nothing > > to say on how people find a Higher Power. > > > > Gloria > > > > ________________________________ > > > > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 because > > of a 18000+ white count and severe rebound tenderness to my > > gallbladder. Several gall stones were discovered last week in my > > semiannual sonogram. My hepatologist admitted me to the hospital > > that day and started me on a course of iv antibiotic that lasted 3 > > days before the white count dropped to normal. I had also developed > > shaking in my hands to the point I could no longer write and have > > had a heck of a time typing on this keyboard. A cbc was done and my > > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > > infusions. I've had several falls recently. I got a cane to help > > with my unsteadyness. > > My wife spoke to my hematologist and asked her what my prognosis is. > > The doc said that due to my heart problems (double bypass) and the > > ongoing anemia plus my age (63), I was not a good candidate for a > > transplant. I've been seeing the transplant group since early 2006. > > I was told because the damage to my liver, that if I required > > anesthesia, that I would not wake up. Therefore, They would not > > allow any surgery. Sounds like a death sentence to me. Apparently, I > > have been diagnosed with Parkinson's and got a Rx upon discharge > > Sunday that will treat the Parkinson's. > > I apologize for venting. I had to tell someone who knows what I'm > > going through. I don't drink or do drugs and I don't have any > > tattoos. My dx is cryptogenic cirrhosis which of course means they > > have no idea what caused the cirrhosis. I'll shut up now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2012 Report Share Posted January 27, 2012 Dear Roni, I am sorry about you going through all that. It is just insane the chaos which can come from ignorance. I expect things to get much worse before they get better, and then everything will suddenly change--when the singularity happens,-- we will be given nano robots through an IV and they will clean up liver fibrosis, restore normal portal pressure, correct genetic defects causing autoimmune hepatitis, and so on an so forth. If any one does not know what the singularity is here is a link. Do not go there is you frighten easily. The concept is not for the faint of heart Love, Bobby http://en.wikipedia.org/wiki/Technological_singularity ________________________________ To: livercirrhosissupport Sent: Thursday, January 26, 2012 10:09 AM Subject: Re: Bad News Bonnie, Does he take Lactulose for the cirrhosis? It's the medication that keeps ammonia down by making you go to bathroom alot. This keeps me from getting constipated from the morphine. Detoxing from morphine is basically detoxing from heroine. It's a horrible thing to go through. It's also dangerous and should be done under a doctor. Sadly, my ex-pharmacist has sent me into detox once and my doctor. I learned I had to find something in case this happens again. Once my pharmacist refused to give me medication even after doctor called it in and another time my pain doctor denied my refill because I had gotten my days mixed up and was a day late for an appointment when the doctor wasn't there. They didn't bother to inform me of this until I called for refill. All of you that have great doctors, you are very lucky. Maybe when he is jerking......he is due for another dose? I'm not a doctor but it wouldn't surprise me if the morphine is causing that particular symptom. Wish you both the best. Roni > I think maybe the jerking is from the morphine but instead of > running out like you did he may be getting too much. I mentioned > that to the dr but she didn' t seem to say much and never changed > the amount. And of course he wants it!! And doesn't want to cut it > down. > With the 60 mg 2 times a day of the slow acting and then popping the > fast acting 15mg when needed he's getting alot in his body. He will > be sitting and all of a sudden his arms fly out with no control. one > day I was driving him back from the Dr and he had been sitting > sleeping and all of a sudden his arms started to fly and his legs > were kicking and i was afraid i was in arms length to get hit as > wild as he was . i hollered at him to wake him up and said whats > wrong and then he kind of woke up and said--what was that? did you > see that?==so i think he was trying to hit and kick at something he > saw in his mind. It was pretty wild for alittle bit. Thought I was > going to have to stop until he settled down. He gets so constipated > from the morphine so takes alot of milk of magnesia. Maybe then > when you got off of it for a time like that it reversed and gave you > the diarrhea so bad instead. Dr told him he would be on the morphine > for the rest of his > life. That has got to be really hard on a persons body too to take > it every day. He tried alot of other pain pills and seems like none > worked until the morphine and then he had to have that doubled from > what he was on too originally. It makes him sleep so much too. . > > > > > > > > > > > Subject: Re: Bad News > > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > > > Date: Monday, January 23, 2012, 2:12 PM > > > > > > > > > > > > Bob > > > > > > In my books, you are allowed to come in and vent your feelings!!! > > > Can't hold them in so that they become a pressure cooker. One > day, > > > I want to put a short version of my walk with all these health and > > > family issues, so that I can just refer folks to it. > > > > > > Anyway, I learned in 2002 that I had this Hep C. In 2004, I began > > > the 1st tx. However, in 2005, at the end of that tx - I was a NR. > > > For the following 3-1/2 yrssometimes I worried a bit; but, > mostly I > > > watched the new drugs coming up the ladder. That were going to > > > allow me to try and kick the dragon. I figured they would hit the > > > market until 2011. Well, they are the new drug out there now, > since > > > last spring; but, I'm Canadian and as far as I know they have not > > > been accepted by every echelon of the red tape here. However, I > was > > > asked to participate in a trial for just these these very drugs in > > > 2009. Finally, the dragon got caught and mortally wounded. > > > > > > However, it left me a parting gift. Liver cancer!! I had a liver > > > resection in Apr 2010; but, the cancer returned in only 15 months. > > > I have looked around for some miracle to totally stop the cancer; > > > but, the only thing offered was a procedure which takes several > > > times to perfect and in the meantime, spills chemo into my system. > > > No thanks!!! I've had enough of feeling like somebody has > dragged > > > me through a keyhole several times. Truly, I do not have a desire > > > to get quantity of life anymore, I want quality for whatever I > have > > > left. > > > > > > I don't have to guess, I know how I'm going to die (barring an > > > accident). I just don't know the end date. However, I try to > have > > > a good and grateful day, every time I wake up. Like today. I'm > on > > > the very west coast of Canada and we had some pretty nasty, back > to > > > back storms hit us. Yet, this morning is an absolutely beautiful > > > day so far. > > > > > > By the way - I was experiencing a lot of falls as well. This time > > > the Dr sent me to an Ophthalmologist who has told me that my > > > distance sight is so bad that I literally can not see my feet in > the > > > dusk. I have to go back for 2 more visits and buy some glasses > > > now. In fact, he told me that if I continued the way I was, he > was > > > obliged to notify Motor Vehicles and they would pull my license. > > > Also, I have slight tremors that I notice especially if I hold my > > > arms out and have even had a little difficulty with a cup of > > whatever. > > > > > > Nope - I'm not a drunk. Sobered up a long time ago. But, between > > > the shakes and how unsteady I am on my feet when I'm walking some > > > days, you sure would think that I just had my last drink a few > hours > > > ago. > > > > > > Hope this helps Bob!!! I only wanted to tell you this, because > I do > > > know how it feels to literally be given the death sentence. For > me, > > > I have a strong spiritual faith to lean on and that is why I am > not > > > afraid. No, I'm not religious, although I have absolutely nothing > > > to say on how people find a Higher Power. > > > > > > Gloria > > > > > > ________________________________ > > > > > > > > > Hi, my name is Bob . I was hospitalized Fri, 01/20/12 > because > > > of a 18000+ white count and severe rebound tenderness to my > > > gallbladder. Several gall stones were discovered last week in my > > > semiannual sonogram. My hepatologist admitted me to the hospital > > > that day and started me on a course of iv antibiotic that lasted 3 > > > days before the white count dropped to normal. I had also > developed > > > shaking in my hands to the point I could no longer write and have > > > had a heck of a time typing on this keyboard. A cbc was done and > my > > > hemaglobin was 8.5. I have chronic anemia and have had 16 iron > > > infusions. I've had several falls recently. I got a cane to help > > > with my unsteadyness. > > > My wife spoke to my hematologist and asked her what my prognosis > is. > > > The doc said that due to my heart problems (double bypass) and the > > > ongoing anemia plus my age (63), I was not a good candidate for a > > > transplant. I've been seeing the transplant group since early > 2006. > > > I was told because the damage to my liver, that if I required > > > anesthesia, that I would not wake up. Therefore, They would not > > > allow any surgery. Sounds like a death sentence to me. > Apparently, I > > > have been diagnosed with Parkinson's and got a Rx upon discharge > > > Sunday that will treat the Parkinson's. > > > I apologize for venting. I had to tell someone who knows what I'm > > > going through. I don't drink or do drugs and I don't have any > > > tattoos. My dx is cryptogenic cirrhosis which of course means they > > > have no idea what caused the cirrhosis. I'll shut up now. > > > > > > Quote Link to comment Share on other sites More sharing options...
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