Guest guest Posted August 22, 2010 Report Share Posted August 22, 2010 Hi Barby: My heart breaks for you as I read your post. Please don't feel guilty about being angry. I know exactly how you feel. It's only been a few short months since my husband had his transplant, and believe me. He was really sick before it. Even tho we are on the other side of this I can remember those bad days, and I cringe whenever I think of those memories. The only thing that got me thru it was knowing that things would one day get better and that the bad times were temporary. You have done a fine job of weathering the storm so far. Your sweet disposition and good sense of humor are an inspiration to us all. Hang in there, and know that others are praying for you. We are here for you whenever you need to vent. Keep us all posted on how things are going and what Bobby Glen's drs say. Hope to hear from you again soon. Love ya, Jackie Subject: need to vent To: livercirrhosissupport Date: Sunday, August 22, 2010, 5:09 PM  this will sound crazy so if you want to skip reading i wont mind. i am pissed, bobby glenns not been feeling well calling dr. tommorrow want scan and labs done NOW not wait till nov. hes losing days by 2. he forgets i fed him and skyler the grandson living with us, i found his empty glass of in the frige instesd of the sink today. he thought it was friday our grandaughters birthday but its sunday, we went to her party he doesnt remeber it. like i said i am pissed or call it scared what ever it is i am it. my newest grandbaby conts. to do good then bad....to be expected for a 25 week old baby i guess. i am tired a 4 year olsd is wearing me out ...hes a boy and for some reason its different than the girls...hes in time out right now....am i to hard on him...or is he to stubborn i dont know. the tears rolling down my face says it all. i am tired but i have to cont. on i have no choice in any of this. if i had my choice i would be at the ocean watching the waves lap the shore...eating at cock of the walk with elsie and roger...but i have no choice. i am here i am mad i am confused i am ....??????? really makes me want a glass of wine, but i live to far from town and its sunday and i cant get any lol. whys life so messed up...what did i do to deserve all this crap???? should i walk away and tell them all do it yourself??? should i just suck it up ,drink water and drive on soldier ???? i know this is my life, for whatever reason these are the cards dealt to me, and i will find away to stand. but right now i am pissy i am sad i miss my life the way it was. i am sorry but if i told anyone in my family the way i feel they would blame me for enabling everyone. you all and elsie...aka mae mae are they only ones i have to vent to that dont sugarcoat the facts or blow smoke up my butt. i love you all and just needed to get this off my chest cause i have been one angry chick all week cause i dont know where these feelings are supposed to go. i am angry with the sick ones the stupid ones and the ones who just dont give a crap. i wanna lay in the sun with a glass of something...even water lol. in my hand soaking up the rays, without a care in the world....but life wont let me. who wouldnt be pissed. sorry if i have offended anyone...welcome to barbys world its me against all of them.... when will it be my turn? i know that sounds selfish but i feel selfish right now. whats god...the universe trying to tell me? well just spit it out already i will do what i need to but i am tired for crying out loud!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2010 Report Share Posted August 23, 2010 Barbi, you are just being human. Diane our rock decided she needed a break. The only reason I haven't been bawling for the last couple of weeks/months to the point of having red eyesis that I don't have any tears. You know what it is like, you have one, two, three things to handle, and if they come on spread apart, you can handle them. You might have to change your life a little bit. In the last couple of months, I have discovered that the doctor I hd been trusting to do something about my anemia whasn't getting the job done, and I was getting weaker and weaker.. When I gave the responsibility to my neph, it took him about 2 weeks to get the treatment going. They had never really given me a cause for the aanemia, just that it wasn't for lack of iron. for some reason my body wasn;t making enough red blood cells. Well, I got this great idea,, I have had blood showing on my feet since last summer because my feet got to large from extra fluid and squeezed the blood out of my veins. I also bruise a lot. I started thinking that maybe I could be bleeding inside in a place where the blood wasn't getting into my digestive track ( like all liver patients, have to check thecolor of bowl movements and they were fine) So I made an appt with my gastro for an endo and colonoscopy. Colon was fine, but an inflamation/infection of the stomach was causing me to bleed between the lining and outer part of my stomach. That made me feel very smart because I had been right. Before I got the results though, I took a little flight withoout the benefit of a plane and made a bad landing, first on my wrist, breaking it, then on my knees, severely bruising one knee cap, and now that the cast is off and the knee swelling as gone down, it is obvious that I also badly sprained ankle. They told me not to start treatment for my stomach as it is really nasty until my arm is taken care of, and the dr. told me I needed at least 4 weekss twice weekly 35 miles away from home. So the treatment will have to wait until the end of Sept. The fall also seems to have set off my fibro myalgia especiilly on the left side where the other injuriees are. So, a few times I have sat here with my chest heaving and no tears because I don't have any. I think I would feel a lot better if I could just open the faucet in my eyes for a while. Look terrible,, but usually is relaxing. And then, when I think that way I feel very guilty for not trusting God to take care of it all in his way. He obviously isn't going to do it my way. By the middle of Oct I should be feeling better, but that seems a long way away right now. So go ahead and vent here, nobody else seems to want to listen, those who should like family and friends. I would include all the other things going on, but I had to do this in two sessions the way it is. BTW I got my cute little cordless mouse working on my netbook, Those of you who don't have a netbook should get one. Mine is a Dell Inspiron mini with Windows 7 Jan H com > wrote: > this will sound crazy so if you want to skip reading i wont mind. i am > pissed, bobby glenns not been feeling well calling dr. tommorrow want scan > and labs done NOW not wait till nov. hes losing days by 2. he forgets i fed > him and skyler the grandson living with us, i found his empty glass of in > the frige instesd of the sink today. he thought it was friday our > grandaughters birthday but its sunday, we went to her party he doesnt > remeber it. like i said i am pissed or call it scared what ever it is i am > it. my newest grandbaby conts. to do good then bad....to be expected for a > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out ...hes > a boy and for some reason its different than the girls...hes in time out > right now....am i to hard on him...or is he to stubborn i dont know. the > tears rolling down my face says it all. i am tired but i have to cont. on i > have no choice in any of this. if i had my choice i would be at the ocean > watching the waves lap the shore...eating at cock of the walk with elsie and > roger...but i have no choice. i am here i am mad i am confused i am > ....??????? really makes me want a glass of wine, but i live to far from > town and its sunday and i cant get any lol. whys life so messed up...what > did i do to deserve all this crap???? should i walk away and tell them all > do it yourself??? should i just suck it up ,drink water and drive on soldier > ???? i know this is my life, for whatever reason these are the cards dealt > to me, and i will find away to stand. but right now i am pissy i am sad i > miss my life the way it was. i am sorry but if i told anyone in my family > the way i feel they would blame me for enabling everyone. you all and > elsie...aka mae mae are they only ones i have to vent to that dont sugarcoat > the facts or blow smoke up my butt. i love you all and just needed to get > this off my chest cause i have been one angry chick all week cause i dont > know where these feelings are supposed to go. i am angry with the sick ones > the stupid ones and the ones who just dont give a crap. i wanna lay in the > sun with a glass of something...even water lol. in my hand soaking up the > rays, without a care in the world....but life wont let me. who wouldnt be > pissed. sorry if i have offended anyone...welcome to barbys world its me > against all of them.... when will it be my turn? i know that sounds selfish > but i feel selfish right now. whats god...the universe trying to tell me? > well just spit it out already i will do what i need to but i am tired for > crying out loud!! > > > > ------------------------------------ > > Group Email: livercirrhosissupport > web address: > http://groups.yahoo.com/group/livercirrhosissupport/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2010 Report Share Posted August 23, 2010 I tried to chat with you yesterday, but it dint work. I was going to say something about how to pull up your big girl boots, and that crap, because just like a lot of folks here, and a lot of peeps there, people LOVE you. People look for your strength. I know its a big rock to carry, but you are strong and you are a good person, and decent lady. Bobby wouldnt fair well at all without you. You family wouldnt fair at all, cause you are the glue! I hope you dont get mad at me for saying all this. I am only verbalizing everything you already know. WE know you are just venting. If you go waaaaayy back on this forum you can find my potty chair rant. I kind of lost it after Ardis died, and the subjsct of substandard nursing care came up. But I was mortified anyway, cause I did post a big ol rant.. Barby, I sure do appreciate your friend ship, and someday Sharon and I are gonna show up down there in KAIN tuck. You jes wait an see. Love, brother bob Democracy is two wolves and a lamb voting on what to have for lunch. Liberty is a well armed lamb contesting the vote. - lin ________________________________ To: livercirrhosissupport Sent: Sun, August 22, 2010 3:09:00 PM Subject: need to vent this will sound crazy so if you want to skip reading i wont mind. i am pissed, bobby glenns not been feeling well calling dr. tommorrow want scan and labs done NOW not wait till nov. hes losing days by 2. he forgets i fed him and skyler the grandson living with us, i found his empty glass of in the frige instesd of the sink today. he thought it was friday our grandaughters birthday but its sunday, we went to her party he doesnt remeber it. like i said i am pissed or call it scared what ever it is i am it. my newest grandbaby conts. to do good then bad....to be expected for a 25 week old baby i guess. i am tired a 4 year olsd is wearing me out ...hes a boy and for some reason its different than the girls...hes in time out right now....am i to hard on him...or is he to stubborn i dont know. the tears rolling down my face says it all. i am tired but i have to cont. on i have no choice in any of this. if i had my choice i would be at the ocean watching the waves lap the shore...eating at cock of the walk with elsie and roger...but i have no choice. i am here i am mad i am confused i am .....??????? really makes me want a glass of wine, but i live to far from town and its sunday and i cant get any lol. whys life so messed up...what did i do to deserve all this crap???? should i walk away and tell them all do it yourself??? should i just suck it up ,drink water and drive on soldier ???? i know this is my life, for whatever reason these are the cards dealt to me, and i will find away to stand. but right now i am pissy i am sad i miss my life the way it was. i am sorry but if i told anyone in my family the way i feel they would blame me for enabling everyone. you all and elsie...aka mae mae are they only ones i have to vent to that dont sugarcoat the facts or blow smoke up my butt. i love you all and just needed to get this off my chest cause i have been one angry chick all week cause i dont know where these feelings are supposed to go. i am angry with the sick ones the stupid ones and the ones who just dont give a crap. i wanna lay in the sun with a glass of something...even water lol. in my hand soaking up the rays, without a care in the world....but life wont let me. who wouldnt be pissed. sorry if i have offended anyone...welcome to barbys world its me against all of them.... when will it be my turn? i know that sounds selfish but i feel selfish right now. whats god...the universe trying to tell me? well just spit it out already i will do what i need to but i am tired for crying out loud!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 thank you jackie feeling much more in conntrol today, called dr. yesterday am, thru a hissy and then took bobby glenn to medicial center and got an ultra sound and labs done...will have results by friday they said. i want a cat scan thats what vandy ordered yearly, riccio seems to think ultrasound is ok...but i am going over his head this morning calling family dr. and having cat scan ordered. hes my husband,not riccios project. hes acting alittle more sound minded today and lastnite,even though he was up telling skyler it was bedtime at 3am, but the poor kid was asleep in his room, i think he was dreaming i dont know. thanks for the pep talk much love barby > > > > Subject: need to vent > To: livercirrhosissupport > Date: Sunday, August 22, 2010, 5:09 PM > > > Â > > > > this will sound crazy so if you want to skip reading i wont mind. i am pissed, bobby glenns not been feeling well calling dr. tommorrow want scan and labs done NOW not wait till nov. hes losing days by 2. he forgets i fed him and skyler the grandson living with us, i found his empty glass of in the frige instesd of the sink today. he thought it was friday our grandaughters birthday but its sunday, we went to her party he doesnt remeber it. like i said i am pissed or call it scared what ever it is i am it. my newest grandbaby conts. to do good then bad....to be expected for a 25 week old baby i guess. i am tired a 4 year olsd is wearing me out ...hes a boy and for some reason its different than the girls...hes in time out right now....am i to hard on him...or is he to stubborn i dont know. the tears rolling down my face says it all. i am tired but i have to cont. on i have no choice in any of this. if i had my choice i would be at the ocean watching the > waves lap the shore...eating at cock of the walk with elsie and roger...but i have no choice. i am here i am mad i am confused i am ....??????? really makes me want a glass of wine, but i live to far from town and its sunday and i cant get any lol. whys life so messed up...what did i do to deserve all this crap???? should i walk away and tell them all do it yourself??? should i just suck it up ,drink water and drive on soldier ???? i know this is my life, for whatever reason these are the cards dealt to me, and i will find away to stand. but right now i am pissy i am sad i miss my life the way it was. i am sorry but if i told anyone in my family the way i feel they would blame me for enabling everyone. you all and elsie...aka mae mae are they only ones i have to vent to that dont sugarcoat the facts or blow smoke up my butt. i love you all and just needed to get this off my chest cause i have been one angry chick all week cause i dont know where these > feelings are supposed to go. i am angry with the sick ones the stupid ones and the ones who just dont give a crap. i wanna lay in the sun with a glass of something...even water lol. in my hand soaking up the rays, without a care in the world....but life wont let me. who wouldnt be pissed. sorry if i have offended anyone...welcome to barbys world its me against all of them.... when will it be my turn? i know that sounds selfish but i feel selfish right now. whats god...the universe trying to tell me? well just spit it out already i will do what i need to but i am tired for crying out loud!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 thanks jan, and girl you sound like me with the wrist, i took a fall awhile back...yup me feel right on the bathroom floor and hadnt even had anywine lol. tripped over my own pajama leg. hairline fractured my wrist 2 places. well that thing they had me in had to go sooner than it should have it was hampering my abilities...esp. wiping my butt hahahaha, now i see how hard it was for bobby glenn with 2 surgeries on his right hand, anyways it still hurts alittle depending how i move it or what i do with it. but it seems to have mended fine. sorry youve had such a rough go of it yourself lately, hers a tip they told me when i was anemic cook in a cast iron frying pan. seems to help with iron levels. hope you get up and feeling better soon, we all fall but what goes down must come up.....kinda like our panties hahahahahaha much love barby > > > this will sound crazy so if you want to skip reading i wont mind. i am > > pissed, bobby glenns not been feeling well calling dr. tommorrow want scan > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i fed > > him and skyler the grandson living with us, i found his empty glass of in > > the frige instesd of the sink today. he thought it was friday our > > grandaughters birthday but its sunday, we went to her party he doesnt > > remeber it. like i said i am pissed or call it scared what ever it is i am > > it. my newest grandbaby conts. to do good then bad....to be expected for a > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out ...hes > > a boy and for some reason its different than the girls...hes in time out > > right now....am i to hard on him...or is he to stubborn i dont know. the > > tears rolling down my face says it all. i am tired but i have to cont. on i > > have no choice in any of this. if i had my choice i would be at the ocean > > watching the waves lap the shore...eating at cock of the walk with elsie and > > roger...but i have no choice. i am here i am mad i am confused i am > > ....??????? really makes me want a glass of wine, but i live to far from > > town and its sunday and i cant get any lol. whys life so messed up...what > > did i do to deserve all this crap???? should i walk away and tell them all > > do it yourself??? should i just suck it up ,drink water and drive on soldier > > ???? i know this is my life, for whatever reason these are the cards dealt > > to me, and i will find away to stand. but right now i am pissy i am sad i > > miss my life the way it was. i am sorry but if i told anyone in my family > > the way i feel they would blame me for enabling everyone. you all and > > elsie...aka mae mae are they only ones i have to vent to that dont sugarcoat > > the facts or blow smoke up my butt. i love you all and just needed to get > > this off my chest cause i have been one angry chick all week cause i dont > > know where these feelings are supposed to go. i am angry with the sick ones > > the stupid ones and the ones who just dont give a crap. i wanna lay in the > > sun with a glass of something...even water lol. in my hand soaking up the > > rays, without a care in the world....but life wont let me. who wouldnt be > > pissed. sorry if i have offended anyone...welcome to barbys world its me > > against all of them.... when will it be my turn? i know that sounds selfish > > but i feel selfish right now. whats god...the universe trying to tell me? > > well just spit it out already i will do what i need to but i am tired for > > crying out loud!! > > > > > > > > ------------------------------------ > > > > Group Email: livercirrhosissupport > > web address: > > http://groups.yahoo.com/group/livercirrhosissupport/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 Hi Barby: Glad to see you're doing better. You know, sometimes you can find humor in the worst situations, and I know you have a sense of humor, so here's a little story I'll share with you. During one of my husband's hospital stays for elevated ammonia levels one of his friends came and visited. This is a friend of his thru the masonic lodge. While they visited, two other friends took me out to dinner, and I found out later that my husband and his friend were talking about an article the friend read in a masonic magazine about former astronaut Buzz Aldrin. (he's a mason, you know) That night I went home to sleep and my husband called me in the middle of the night. It sounded like he was having a panic attack so I called the nurses desk and asked if they would check on him. They said he was ok but if I wanted to I could come and stay with him. I threw on some clothes and drove down to the hospital at 3am and curled up in the recliner beside his bed. It took me 2 hours to get back to sleep. I was asleep for about an hour when I heard him calling me and telling me to wake up! " You're gonna miss it! "  He said, so I said " What? "  He answered, " The moon launch " and I said " What moon launch? Is there a moon launch on TV? " (the tv was off) and he said " No, me! I'm Buzz Aldrin! I'm goin to the moon! "  I was so mad cause he woke me up & I told him to buzz off & go back to sleep! We still laugh about it to this day. We had a chair lift installed in the house so he doesn't have to use the steps when he's too tired. Whenever he gets in his chair lift I go " Houston. We have lift off! "  LOL. Hope you got a kick out of that story. Jackie Subject: Re: need to vent To: livercirrhosissupport Date: Tuesday, August 24, 2010, 9:54 AM  thank you jackie feeling much more in conntrol today, called dr. yesterday am, thru a hissy and then took bobby glenn to medicial center and got an ultra sound and labs done...will have results by friday they said. i want a cat scan thats what vandy ordered yearly, riccio seems to think ultrasound is ok...but i am going over his head this morning calling family dr. and having cat scan ordered. hes my husband,not riccios project. hes acting alittle more sound minded today and lastnite,even though he was up telling skyler it was bedtime at 3am, but the poor kid was asleep in his room, i think he was dreaming i dont know. thanks for the pep talk much love barby > > > > Subject: need to vent > To: livercirrhosissupport > Date: Sunday, August 22, 2010, 5:09 PM > > >  > > > > this will sound crazy so if you want to skip reading i wont mind. i am pissed, bobby glenns not been feeling well calling dr. tommorrow want scan and labs done NOW not wait till nov. hes losing days by 2. he forgets i fed him and skyler the grandson living with us, i found his empty glass of in the frige instesd of the sink today. he thought it was friday our grandaughters birthday but its sunday, we went to her party he doesnt remeber it. like i said i am pissed or call it scared what ever it is i am it. my newest grandbaby conts. to do good then bad....to be expected for a 25 week old baby i guess. i am tired a 4 year olsd is wearing me out ...hes a boy and for some reason its different than the girls...hes in time out right now....am i to hard on him...or is he to stubborn i dont know. the tears rolling down my face says it all. i am tired but i have to cont. on i have no choice in any of this. if i had my choice i would be at the ocean watching the > waves lap the shore...eating at cock of the walk with elsie and roger...but i have no choice. i am here i am mad i am confused i am ....??????? really makes me want a glass of wine, but i live to far from town and its sunday and i cant get any lol. whys life so messed up...what did i do to deserve all this crap???? should i walk away and tell them all do it yourself??? should i just suck it up ,drink water and drive on soldier ???? i know this is my life, for whatever reason these are the cards dealt to me, and i will find away to stand. but right now i am pissy i am sad i miss my life the way it was. i am sorry but if i told anyone in my family the way i feel they would blame me for enabling everyone. you all and elsie...aka mae mae are they only ones i have to vent to that dont sugarcoat the facts or blow smoke up my butt. i love you all and just needed to get this off my chest cause i have been one angry chick all week cause i dont know where these > feelings are supposed to go. i am angry with the sick ones the stupid ones and the ones who just dont give a crap. i wanna lay in the sun with a glass of something...even water lol. in my hand soaking up the rays, without a care in the world....but life wont let me. who wouldnt be pissed. sorry if i have offended anyone...welcome to barbys world its me against all of them.... when will it be my turn? i know that sounds selfish but i feel selfish right now. whats god...the universe trying to tell me? well just spit it out already i will do what i need to but i am tired for crying out loud!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 thanks bobby you didnt offend me ,i know what you say is the truth!! and its not big girl BOOTS its big girl PANTIES lol and trust me i have them pulled up so high today i look like i could rob a bank in my thongs hahahahahaha. remember that song " the b**** is back ? " well she is teehee. i have great friends who love me a wonderful family even when they expect to much from me. i know they love me and a husband who i couldnt imagine my life without. so yes i am good again ,till the next time i thank god for all of you ...you to mae-mae ,live would be so much harder without knowing i have ya all to lean on. you and sharon come right on ,oh what grand fun that would be love you my brother from a different mother !!!!!! > > I tried to chat with you yesterday, but it dint work. I was going to say > something about how to pull up your big girl boots, and that crap, because just > like a lot of folks here, and a lot of peeps there, people LOVE you. People look > for your strength. I know its a big rock to carry, but you are strong and you > are a good person, and decent lady. Bobby wouldnt fair well at all without you. > You family wouldnt fair at all, cause you are the glue! I hope you dont get mad > at me for saying all this. I am only verbalizing everything you already know. > WE know you are just venting. If you go waaaaayy back on this forum you can find > my potty chair rant. I kind of lost it after Ardis died, and the subjsct of > substandard nursing care came up. But I was mortified anyway, cause I did post a > big ol rant.. Barby, I sure do appreciate your friend ship, and someday Sharon > and I are gonna show up down there in KAIN tuck. You jes wait an see. Love, > brother bob > > Democracy is two wolves and a lamb voting on what to have for lunch. Liberty is > a well armed lamb contesting the vote. - lin > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Sun, August 22, 2010 3:09:00 PM > Subject: need to vent > > > this will sound crazy so if you want to skip reading i wont mind. i am pissed, > bobby glenns not been feeling well calling dr. tommorrow want scan and labs done > NOW not wait till nov. hes losing days by 2. he forgets i fed him and skyler the > grandson living with us, i found his empty glass of in the frige instesd of the > sink today. he thought it was friday our grandaughters birthday but its sunday, > we went to her party he doesnt remeber it. like i said i am pissed or call it > scared what ever it is i am it. my newest grandbaby conts. to do good then > bad....to be expected for a 25 week old baby i guess. i am tired a 4 year olsd > is wearing me out ...hes a boy and for some reason its different than the > girls...hes in time out right now....am i to hard on him...or is he to stubborn > i dont know. the tears rolling down my face says it all. i am tired but i have > to cont. on i have no choice in any of this. if i had my choice i would be at > the ocean watching the waves lap the shore...eating at cock of the walk with > elsie and roger...but i have no choice. i am here i am mad i am confused i am > ....??????? really makes me want a glass of wine, but i live to far from town > and its sunday and i cant get any lol. whys life so messed up...what did i do to > deserve all this crap???? should i walk away and tell them all do it > yourself??? should i just suck it up ,drink water and drive on soldier ???? i > know this is my life, for whatever reason these are the cards dealt to me, and i > will find away to stand. but right now i am pissy i am sad i miss my life the > way it was. i am sorry but if i told anyone in my family the way i feel they > would blame me for enabling everyone. you all and elsie...aka mae mae are they > only ones i have to vent to that dont sugarcoat the facts or blow smoke up my > butt. i love you all and just needed to get this off my chest cause i have been > one angry chick all week cause i dont know where these feelings are supposed to > go. i am angry with the sick ones the stupid ones and the ones who just dont > give a crap. i wanna lay in the sun with a glass of something...even water lol. > in my hand soaking up the rays, without a care in the world....but life wont let > me. who wouldnt be pissed. sorry if i have offended anyone...welcome to barbys > world its me against all of them.... when will it be my turn? i know that sounds > selfish but i feel selfish right now. whats god...the universe trying to tell > me? well just spit it out already i will do what i need to but i am tired for > crying out loud!! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 hahahahaha to cute girl, i love the chair and lift off. oh speaking of moons, friday nite well at midnight,for those of us who cant sleep there will be 2 moons visaible in the sky, one its actually gonna be mars i think i read, they say anyone alive today should watch for it cause we will never see it again if we are here now. thought i would throw that out there for any of you sky watchers. i am hoping to get some good pictures of it for my grandkids when they are older. i wonder if vidio taping will pick it up . ok toots thanks for the laugh love you barby > > > > > > From: barby <pinkmeetsblue@> > > Subject: need to vent > > To: livercirrhosissupport > > Date: Sunday, August 22, 2010, 5:09 PM > > > > > >  > > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am pissed, bobby glenns not been feeling well calling dr. tommorrow want scan and labs done NOW not wait till nov. hes losing days by 2. he forgets i fed him and skyler the grandson living with us, i found his empty glass of in the frige instesd of the sink today. he thought it was friday our grandaughters birthday but its sunday, we went to her party he doesnt remeber it. like i said i am pissed or call it scared what ever it is i am it. my newest grandbaby conts. to do good then bad....to be expected for a 25 week old baby i guess. i am tired a 4 year olsd is wearing me out ...hes a boy and for some reason its different than the girls...hes in time out right now....am i to hard on him...or is he to stubborn i dont know. the tears rolling down my face says it all. i am tired but i have to cont. on i have no choice in any of this. if i had my choice i would be at the ocean watching the > > waves lap the shore...eating at cock of the walk with elsie and roger...but i have no choice. i am here i am mad i am confused i am ....??????? really makes me want a glass of wine, but i live to far from town and its sunday and i cant get any lol. whys life so messed up...what did i do to deserve all this crap???? should i walk away and tell them all do it yourself??? should i just suck it up ,drink water and drive on soldier ???? i know this is my life, for whatever reason these are the cards dealt to me, and i will find away to stand. but right now i am pissy i am sad i miss my life the way it was. i am sorry but if i told anyone in my family the way i feel they would blame me for enabling everyone. you all and elsie...aka mae mae are they only ones i have to vent to that dont sugarcoat the facts or blow smoke up my butt. i love you all and just needed to get this off my chest cause i have been one angry chick all week cause i dont know where these > > feelings are supposed to go. i am angry with the sick ones the stupid ones and the ones who just dont give a crap. i wanna lay in the sun with a glass of something...even water lol. in my hand soaking up the rays, without a care in the world....but life wont let me. who wouldnt be pissed. sorry if i have offended anyone...welcome to barbys world its me against all of them.... when will it be my turn? i know that sounds selfish but i feel selfish right now. whats god...the universe trying to tell me? well just spit it out already i will do what i need to but i am tired for crying out loud!! > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 Barby, the funny thing about the fall is that I was wearing flats when I took off on my little flight. People have been telling me for years to quit wearing my spikes or I WOULD fall snd break something. As too the cast iron pans, my iron level is fine, not causing the anemia.Trying to hook my bras is still hard since I have to watch the stress on my wrist Yup, hard to wipe the butt with splint or cast, and not easy to wash one hand either. That i probably why 2 doctors told me to wait until I AM DONE with my arm before starting the trewtmnt for my stomach. i have bought medicine for diarrhea and also a bunch of package of large wipes. Glad you are feeling better today, it sure is a roller coaster ride isn't it. jAN h > thanks jan, and girl you sound like me with the wrist, i took a fall awhile > back...yup me feel right on the bathroom floor and hadnt even had anywine > lol. tripped over my own pajama leg. hairline fractured my wrist 2 places. > well that thing they had me in had to go sooner than it should have it was > hampering my abilities...esp. wiping my butt hahahaha, now i see how hard it > was for bobby glenn with 2 surgeries on his right hand, anyways it still > alittle depending how i move it or what i do with it. but it seems to have > mended fine. sorry youve had such a rough go of it yourself lately, hers a > tip they told me when i was anemic cook in a cast iron frying pan. seems to > help with iron levels. hope you get up and feeling better soon, we all fall > but what goes down must come up.....kinda like our panties hahahahahaha much > love barby > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > scan > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > fed > > > him and skyler the grandson living with us, i found his empty glass of > in > > > the frige instesd of the sink today. he thought it was friday our > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > remeber it. like i said i am pissed or call it scared what ever it is i > am > > > it. my newest grandbaby conts. to do good then bad....to be expected > for a > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > ...hes > > > a boy and for some reason its different than the girls...hes in time > out > > > right now....am i to hard on him...or is he to stubborn i dont know. > the > > > tears rolling down my face says it all. i am tired but i have to cont. > on i > > > have no choice in any of this. if i had my choice i would be at the > ocean > > > watching the waves lap the shore...eating at cock of the walk with > elsie and > > > roger...but i have no choice. i am here i am mad i am confused i am > > > ....??????? really makes me want a glass of wine, but i live to far > from > > > town and its sunday and i cant get any lol. whys life so messed > up...what > > > did i do to deserve all this crap???? should i walk away and tell them > all > > > do it yourself??? should i just suck it up ,drink water and drive on > soldier > > > ???? i know this is my life, for whatever reason these are the cards > dealt > > > to me, and i will find away to stand. but right now i am pissy i am sad > i > > > miss my life the way it was. i am sorry but if i told anyone in my > family > > > the way i feel they would blame me for enabling everyone. you all and > > > elsie...aka mae mae are they only ones i have to vent to that dont > sugarcoat > > > the facts or blow smoke up my butt. i love you all and just needed to > get > > > this off my chest cause i have been one angry chick all week cause i > dont > > > know where these feelings are supposed to go. i am angry with the sick > ones > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > the > > > sun with a glass of something...even water lol. in my hand soaking up > the > > > rays, without a care in the world....but life wont let me. who wouldnt > be > > > pissed. sorry if i have offended anyone...welcome to barbys world its > me > > > against all of them.... when will it be my turn? i know that sounds > selfish > > > but i feel selfish right now. whats god...the universe trying to tell > me? > > > well just spit it out already i will do what i need to but i am tired > for > > > crying out loud!! > > > > > > > > > > > > ------------------------------------ > > > > > > Group Email: livercirrhosissupport > > > web address: > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 Hi Bonnie: I'm Jackie. My husband had a liver transplant on May 26th and he was quite sick before he was transplanted. His cirrhosis came from non-alcoholic fatty liver disease, which progressed to 3 cancerous tumors in the right lobe of his liver. His meld score was in the 30's when he was transplanted. We went thru a handful of months of decompensated liver disease after he was injected with chemo to kill off the liver tumors. He had many of the symptoms you talk about, like elevated ammonia. We were able to control the ammonia levels with lactulose and xifaxin. He also had fluid building up in his abdomen (ascites) which we also managed by having the fluid drained off once every 2 weeks. It's a proceedure called paracentesis. He was tired all the time and lost over 60 lbs due to the diaharria from lactulose and loss of appetite. He lost muscle mass and became very weak. There is hope, as he has had his transplant and is doing much better now, gaining weight and muscle mass. He's eating like a teenager! (LOL) You need to know the side effects of this disease and how to manage them. You will learn much on this forum, as I did. It sounds like you are doing a good job being an advocate for your husband and learning all you can. One thing I would suggest is that as soon as possible you get a legal and medical power of attorney for your husband. That way you will be able to make decisions in his best interest when he is unable to speak for himself, for instance, when his ammonia levels are up. I'll tell you a quick story of what happened to me. The first time my husband had a problem with his ammonia level I called for an ambulance. They came and took him to the hospital where he was admitted for 3 days. Once I got him home, a week later his ammonia was up again and I called the ambulance. They came in to take him and remembered being here last week. They asked him if he wanted to go to the hospital and he told them he was all right. All he wanted to do was sleep and not take his lactulose or pills. To my horror, the paramedic said they couldn't take him to the hospital unless he was willing to go. I explained to them that he was not capable of making that decision because of his ammonia level, and if he continued to lay there and sleep and not get his medicine or treatment to lower the ammonia that he would go into a coma and die. The paramedic said to me " maybe he wants to let nature take it's course. "  I was horrified! And I finally convinced this policeman who was with them that he needed to go to the hospital. After that episode I had a lawyer come to the house so that we could sign papers to be each other's power of attorney. Enough said on the importance of that. Please keep us posted on your progress. Hoping your husband gets his new liver real soon. Jackie Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 9:00 PM  Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 Bonnie, He will remain tired and sleep most the time. He will if not already have major mood swings, he might jerk and twitch when sleeping. He will be confused alot, make sure he keeps up the lactuloce, this will keep him focused. He will be taking a crud load of meds., Is he already on the transplant list? You need to stay strong stay in there with him. After he recieves his transplant everything will return to normal or you will see a new man. I had the transplant 4 years ago and I am doing very well. If you have any questions what so ever please ask. Thats what we are here for. Best of luck Mike Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 8:00 PM Â Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 hi bonnie, my name is barby, my husband also has hep c and esld. we are also awaiting his new labs. yes he stays tired and swollen to, applying for disability isnt fun but i hope the speed his up as well as all of us who are still waiting for it. my husband couldnt take the hep c shots,put now we have people here who got their new livers took the shots and have great lives so i will let them tell you their stories...as for ours we are still waiting also. best of luck and you both will be in my prayers. much love barby > > > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > > scan > > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > > fed > > > > > him and skyler the grandson living with us, i found his empty glass of > > > in > > > > > the frige instesd of the sink today. he thought it was friday our > > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > > am > > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > > for a > > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > > ...hes > > > > > a boy and for some reason its different than the girls...hes in time > > > out > > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > > the > > > > > tears rolling down my face says it all. i am tired but i have to cont. > > > on i > > > > > have no choice in any of this. if i had my choice i would be at the > > > ocean > > > > > watching the waves lap the shore...eating at cock of the walk with > > > elsie and > > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > > ....??????? really makes me want a glass of wine, but i live to far > > > from > > > > > town and its sunday and i cant get any lol. whys life so messed > > > up...what > > > > > did i do to deserve all this crap???? should i walk away and tell them > > > all > > > > > do it yourself??? should i just suck it up ,drink water and drive on > > > soldier > > > > > ???? i know this is my life, for whatever reason these are the cards > > > dealt > > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > > i > > > > > miss my life the way it was. i am sorry but if i told anyone in my > > > family > > > > > the way i feel they would blame me for enabling everyone. you all and > > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > > sugarcoat > > > > > the facts or blow smoke up my butt. i love you all and just needed to > > > get > > > > > this off my chest cause i have been one angry chick all week cause i > > > dont > > > > > know where these feelings are supposed to go. i am angry with the sick > > > ones > > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > > the > > > > > sun with a glass of something...even water lol. in my hand soaking up > > > the > > > > > rays, without a care in the world....but life wont let me. who wouldnt > > > be > > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > > me > > > > > against all of them.... when will it be my turn? i know that sounds > > > selfish > > > > > but i feel selfish right now. whats god...the universe trying to tell > > > me? > > > > > well just spit it out already i will do what i need to but i am tired > > > for > > > > > crying out loud!! > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > Group Email: livercirrhosissupport > > > > > web address: > > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Jackie, You know I have POA for my mom, but I really never thought about it for my husband. You are right, because should his ammonia levels make him confused to the point you are talking about, I will need it. His liver specialist said if he is sleeping all the time and i cant wake him up, thats when I need to take him to the hospital. In anyone's experience with a MELD score? The doc said that 14 was very close to needing a transplant, but at 16 he will need to be on the list. So he cannot get on the list. Plus where he has Hep C. I dont think he's eligible. On top of that he applied for social security and right now only has limited medical coverage through the county. we got a phone call from his primary physician who made us go in first thing in the morning to discuss the low WBC and platelets and his high ammonia levels, so we were told to go to the ER for evaluation or to drain the acites. When i brought him to the hospital with lab results in hand, the doctor walked in, said, " numbers mean nothing " this man did not know my husbands baseline (he was falling asleep on the bed at the ER) then he sends in the receptionist and tells us we need to give 200 dollars to finish the visit. I asked for what, they said they it would cost a very high amount to treat him " i asked well are u going to admit him for 200 dollars? she said i dont know maam. i was very angry, she handed him lactulose Rx and we left. frustrating. that was a few weeks ago. He is sleeping, complains of having no energy. If he has a MELD score of 14, how bad is that? when he walks his right leg swells up so bad. If he doesnt get a transplant, what is the usual progression? will he live for another 5 years? Or is it all subjective? I feel so bad for him, oh, he hasnt lost any weight. He is 305 pounds and 6'1 " . thanks, Bonnie ________________________________ To: livercirrhosissupport Sent: Wed, August 25, 2010 9:24:13 PM Subject: Re: need to vent Hi Bonnie: I'm Jackie. My husband had a liver transplant on May 26th and he was quite sick before he was transplanted. His cirrhosis came from non-alcoholic fatty liver disease, which progressed to 3 cancerous tumors in the right lobe of his liver. His meld score was in the 30's when he was transplanted. We went thru a handful of months of decompensated liver disease after he was injected with chemo to kill off the liver tumors. He had many of the symptoms you talk about, like elevated ammonia. We were able to control the ammonia levels with lactulose and xifaxin. He also had fluid building up in his abdomen (ascites) which we also managed by having the fluid drained off once every 2 weeks. It's a proceedure called paracentesis. He was tired all the time and lost over 60 lbs due to the diaharria from lactulose and loss of appetite. He lost muscle mass and became very weak. There is hope, as he has had his transplant and is doing much better now, gaining weight and muscle mass. He's eating like a teenager! (LOL) You need to know the side effects of this disease and how to manage them. You will learn much on this forum, as I did. It sounds like you are doing a good job being an advocate for your husband and learning all you can. One thing I would suggest is that as soon as possible you get a legal and medical power of attorney for your husband. That way you will be able to make decisions in his best interest when he is unable to speak for himself, for instance, when his ammonia levels are up. I'll tell you a quick story of what happened to me. The first time my husband had a problem with his ammonia level I called for an ambulance. They came and took him to the hospital where he was admitted for 3 days. Once I got him home, a week later his ammonia was up again and I called the ambulance. They came in to take him and remembered being here last week. They asked him if he wanted to go to the hospital and he told them he was all right. All he wanted to do was sleep and not take his lactulose or pills. To my horror, the paramedic said they couldn't take him to the hospital unless he was willing to go. I explained to them that he was not capable of making that decision because of his ammonia level, and if he continued to lay there and sleep and not get his medicine or treatment to lower the ammonia that he would go into a coma and die. The paramedic said to me " maybe he wants to let nature take it's course. " I was horrified! And I finally convinced this policeman who was with them that he needed to go to the hospital. After that episode I had a lawyer come to the house so that we could sign papers to be each other's power of attorney. Enough said on the importance of that. Please keep us posted on your progress. Hoping your husband gets his new liver real soon. Jackie Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 9:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 feed the liver 5 small meals(snacks) verylittle  if any sodium,stay away from easy on the shelf meals,and soups,they are full of sodium.eat lots of fruit. green tea is a must,only let him consume a 2 liter of liquid aday,for swelling.  Tonnia L. Whitney aka {Tommie Girl " ________________________________ To: livercirrhosissupport Sent: Wed, August 25, 2010 9:00:33 PM Subject: Re: need to vent  Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Mike, thanks for the info. He is not on transplant list yet. His MELD rate is 14, doc says 16 is when u get on the list. He is very tired, sleeping a lot. He also has Hep C. He applied for ss. But he seems like he is just kinda giving up. Laying around on the couch, then to the bed, I heard that if he has Hep C the cirrohsis will progress quicker. Is that true. Im trying to get as much info as possible, like what to expect and how long does this go on.? Thanks. Bonnie ________________________________ To: livercirrhosissupport Sent: Wed, August 25, 2010 10:41:46 PM Subject: Re: need to vent Bonnie, He will remain tired and sleep most the time. He will if not already have major mood swings, he might jerk and twitch when sleeping. He will be confused alot, make sure he keeps up the lactuloce, this will keep him focused. He will be taking a crud load of meds., Is he already on the transplant list? You need to stay strong stay in there with him. After he recieves his transplant everything will return to normal or you will see a new man. I had the transplant 4 years ago and I am doing very well. If you have any questions what so ever please ask. Thats what we are here for. Best of luck Mike Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 8:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Hi Bonnie: It's my understanding that a hospital cannot refuse you treatment, even if you have no insurance. I hope you have an opportunity to explain to your primary care physician about what happened when you went to the ER. Is there another hospital close by that you can go to? Where is your nearest transplant hospital? You might be able to find that out by looking it up on the internet by searching " liver transplant. "  Maybe even your primary care dr knows where the nearest transplant center is. He could probably give you a referral to get an evaluation for transplant. That's where you would start. I'm not sure what the criteria are for hep c, as my husband tested negative for all the hep c viruses. When my husband had open heart surgery in 2004 I remember asking the dr if his insurance would cover it and the dr told me that they don't worry about that. The physician's job is to treat the patient and not concern himself with the billing. The drs are in business to save lives. I would pursue this aggressively if I were you. Stand firm and don't take no for an answer. Please keep me posted. I am very concerned for you and your husband. Hope I have been of some help. Jackie Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 9:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Bonnie, I had Hep C and and my score was a 13 and i was put on the list. My score was a 19 when I got my transplat. It took 9 months before I got my transplant and believe me I know I would not have lasted another week. I know its gonna be hard and I had awesome support from my wife. She made my interact with the family and made me get out and do things regardless what I did or said. But I was lucky I didnt have the ammonia and any of the other sicknesses. I did what the doctors told me to do, but I also went by my on body instincts. I ate what i wanted but no salt. I drank nothing but water and cranberry juice. I guess what i am saying is that there is gonna me alot of changes through this but keep it as normal as possible. Have both of you gone to the pre and post transplant classes. It was required before you got on the list. It is very helpful and there are people like myself that goes to these meetings that are there to try to help peolpe cope and understand what to expect before and after the transplant. Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 8:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Mike, I didnt know that you could even get on the list with a MELD of 14, and did you have good insurance? were u tired a lot? thanks for the info. how did you feel when you were at a score of 13? was it like I described. He's so sleepy all day. Thanks for the encouragement. Bonnie ________________________________ To: livercirrhosissupport Sent: Thu, August 26, 2010 9:32:58 PM Subject: Re: need to vent Bonnie, I had Hep C and and my score was a 13 and i was put on the list. My score was a 19 when I got my transplat. It took 9 months before I got my transplant and believe me I know I would not have lasted another week. I know its gonna be hard and I had awesome support from my wife. She made my interact with the family and made me get out and do things regardless what I did or said. But I was lucky I didnt have the ammonia and any of the other sicknesses. I did what the doctors told me to do, but I also went by my on body instincts. I ate what i wanted but no salt. I drank nothing but water and cranberry juice. I guess what i am saying is that there is gonna me alot of changes through this but keep it as normal as possible. Have both of you gone to the pre and post transplant classes. It was required before you got on the list. It is very helpful and there are people like myself that goes to these meetings that are there to try to help peolpe cope and understand what to expect before and after the transplant. Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 8:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Jackie Hi, I brought my husband on August 4th, and I am still so hopping mad that I am just now calm enough to write a letter to the Director of our experience. Mike on this forum offered some pointers surrounding the Hep C. I didnt realize that you could get on a transplant list at a MELD of 14. However, with insurance from social security, if he is found eligible, will that pay? How many years does it take before he gets so sick that he will need to go to hospice, or does each person develop differently, and what will I notice. I dont dare ask the doctor in front of my husband, as I dont want him to feel bad. This would be the place to ask I guess, seeing as you all have been through it and can give me some good insight. Thanks again. Bonnie ________________________________ To: livercirrhosissupport Sent: Thu, August 26, 2010 8:25:28 PM Subject: Re: need to vent Hi Bonnie: It's my understanding that a hospital cannot refuse you treatment, even if you have no insurance. I hope you have an opportunity to explain to your primary care physician about what happened when you went to the ER. Is there another hospital close by that you can go to? Where is your nearest transplant hospital? You might be able to find that out by looking it up on the internet by searching " liver transplant. " Maybe even your primary care dr knows where the nearest transplant center is. He could probably give you a referral to get an evaluation for transplant. That's where you would start. I'm not sure what the criteria are for hep c, as my husband tested negative for all the hep c viruses. When my husband had open heart surgery in 2004 I remember asking the dr if his insurance would cover it and the dr told me that they don't worry about that. The physician's job is to treat the patient and not concern himself with the billing. The drs are in business to save lives. I would pursue this aggressively if I were you. Stand firm and don't take no for an answer. Please keep me posted. I am very concerned for you and your husband. Hope I have been of some help. Jackie Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 9:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Hi  I have ESLD and was diagnosed in 2008. I was in Florida and my children moved me back to Texas with a high meld score in the 18 to 20 range. It took me around 4 months to be listed on the transplant list for liver and kidney. I have since rested alot and have taken all the medication that the liver institute. (I don't care for the Kristolose but love to take it for it does help with my confusion. I have recently had a meld score of 10 and am doing okay. I stay tired all the time, but have learned to pace myself and tell others that I am tired.  I hope my story helps....please ask any questions that you want to ask. This is a fantastic group. Thank you God for this day and for my tomorrows .  Love, Lyncia   Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 8:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 hi bonnie, i know that in texas once you start getting ss disability you have to wait for two yrs to apply for medicare disability.but i agree with jackie the hosp should not refuse treatment with no insurance.i would call the hosp. directors here in tx they take you and get you stable and then transfer you to one of the county hosp. and you then apply for what they call gold card for medical treatment.thats what we had to do for my 23 yr old son when he gat a gunshot wound about a year ago.and they paid for everything. its a hassle but worth it. god bless and good luck. bev, tx ________________________________ To: livercirrhosissupport Sent: Thu, August 26, 2010 11:35:12 PM Subject: Re: need to vent Jackie Hi, I brought my husband on August 4th, and I am still so hopping mad that I am just now calm enough to write a letter to the Director of our experience. Mike on this forum offered some pointers surrounding the Hep C. I didnt realize that you could get on a transplant list at a MELD of 14. However, with insurance from social security, if he is found eligible, will that pay? How many years does it take before he gets so sick that he will need to go to hospice, or does each person develop differently, and what will I notice. I dont dare ask the doctor in front of my husband, as I dont want him to feel bad. This would be the place to ask I guess, seeing as you all have been through it and can give me some good insight. Thanks again. Bonnie ________________________________ To: livercirrhosissupport Sent: Thu, August 26, 2010 8:25:28 PM Subject: Re: need to vent Hi Bonnie: It's my understanding that a hospital cannot refuse you treatment, even if you have no insurance. I hope you have an opportunity to explain to your primary care physician about what happened when you went to the ER. Is there another hospital close by that you can go to? Where is your nearest transplant hospital? You might be able to find that out by looking it up on the internet by searching " liver transplant. " Maybe even your primary care dr knows where the nearest transplant center is. He could probably give you a referral to get an evaluation for transplant. That's where you would start. I'm not sure what the criteria are for hep c, as my husband tested negative for all the hep c viruses. When my husband had open heart surgery in 2004 I remember asking the dr if his insurance would cover it and the dr told me that they don't worry about that. The physician's job is to treat the patient and not concern himself with the billing. The drs are in business to save lives. I would pursue this aggressively if I were you. Stand firm and don't take no for an answer. Please keep me posted. I am very concerned for you and your husband. Hope I have been of some help. Jackie Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 9:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 lyncia have you received your transplant yet i have been on the list since dec 2009 with a meld ranging from 19 to 21 i had one has high as 23 then it went down some.where in tx are your drs. bev,tx ________________________________ To: livercirrhosissupport Sent: Thu, August 26, 2010 11:44:37 PM Subject: Re: need to vent Hi I have ESLD and was diagnosed in 2008. I was in Florida and my children moved me back to Texas with a high meld score in the 18 to 20 range. It took me around 4 months to be listed on the transplant list for liver and kidney. I have since rested alot and have taken all the medication that the liver institute. (I don't care for the Kristolose but love to take it for it does help with my confusion. I have recently had a meld score of 10 and am doing okay. I stay tired all the time, but have learned to pace myself and tell others that I am tired. I hope my story helps....please ask any questions that you want to ask. This is a fantastic group. Thank you God for this day and for my tomorrows . Love, Lyncia Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 8:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 No transplant yet. I have been on the transplant list since 7/2008. My meld score has been very stable this past year. Thank you God for this day and for my tomorrows .  Love, Lyncia   Subject: Re: need to vent To: livercirrhosissupport Date: Wednesday, August 25, 2010, 8:00 PM Hi everyone, I am glad to find this group and unsure how to navigate it. Hopefully u all can give me some insight. My husband was admitted to the hospital for 4 days in July. He was told prior to this that he has cirhossis and Hepatitis C. His enzymes are up and down. His liver specialist said that even though he isnt drinking, they will fluctuate. His white cells and platelets are very low. Too low for the interferon and ribo shots. He is using lactulose for the ammonia levels. they were at 77 while in the hospital and 3 weeks ago his ammonia was 156. Last week they were at 66. He is so tired all the time, he sleeps so much. His liver specialist said that a med rate of 16 he would need a liver transplant. His med rate is 14. He has applied for disability. What should I expect.? Hes had an ultrasound, all of the labs, and x rays. we are waiting on the results. In any case we were very stunned by the news that he is almost at the point of a liver transplant. Can someone tell me some of the symptoms, outcomes, prognosis (which i realize is different in each case) will he be tired like this all the time. He is 54 years old. It doesnt seem like anything can be done, except control the side effects, like leg swelling and infection. any input would be appreciate. Thanks Bonnie ________________________________ To: livercirrhosissupport Sent: Tue, August 24, 2010 9:53:54 PM Subject: Re: need to vent yes roller coater ride puts it mildly girl!!!!! > > > > > > > this will sound crazy so if you want to skip reading i wont mind. i am > > > > pissed, bobby glenns not been feeling well calling dr. tommorrow want > > scan > > > > and labs done NOW not wait till nov. hes losing days by 2. he forgets i > > fed > > > > him and skyler the grandson living with us, i found his empty glass of > > in > > > > the frige instesd of the sink today. he thought it was friday our > > > > grandaughters birthday but its sunday, we went to her party he doesnt > > > > remeber it. like i said i am pissed or call it scared what ever it is i > > am > > > > it. my newest grandbaby conts. to do good then bad....to be expected > > for a > > > > 25 week old baby i guess. i am tired a 4 year olsd is wearing me out > > ...hes > > > > a boy and for some reason its different than the girls...hes in time > > out > > > > right now....am i to hard on him...or is he to stubborn i dont know. > > the > > > > tears rolling down my face says it all. i am tired but i have to cont. > > on i > > > > have no choice in any of this. if i had my choice i would be at the > > ocean > > > > watching the waves lap the shore...eating at cock of the walk with > > elsie and > > > > roger...but i have no choice. i am here i am mad i am confused i am > > > > ....??????? really makes me want a glass of wine, but i live to far > > from > > > > town and its sunday and i cant get any lol. whys life so messed > > up...what > > > > did i do to deserve all this crap???? should i walk away and tell them > > all > > > > do it yourself??? should i just suck it up ,drink water and drive on > > soldier > > > > ???? i know this is my life, for whatever reason these are the cards > > dealt > > > > to me, and i will find away to stand. but right now i am pissy i am sad > > i > > > > miss my life the way it was. i am sorry but if i told anyone in my > > family > > > > the way i feel they would blame me for enabling everyone. you all and > > > > elsie...aka mae mae are they only ones i have to vent to that dont > > sugarcoat > > > > the facts or blow smoke up my butt. i love you all and just needed to > > get > > > > this off my chest cause i have been one angry chick all week cause i > > dont > > > > know where these feelings are supposed to go. i am angry with the sick > > ones > > > > the stupid ones and the ones who just dont give a crap. i wanna lay in > > the > > > > sun with a glass of something...even water lol. in my hand soaking up > > the > > > > rays, without a care in the world....but life wont let me. who wouldnt > > be > > > > pissed. sorry if i have offended anyone...welcome to barbys world its > > me > > > > against all of them.... when will it be my turn? i know that sounds > > selfish > > > > but i feel selfish right now. whats god...the universe trying to tell > > me? > > > > well just spit it out already i will do what i need to but i am tired > > for > > > > crying out loud!! > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Group Email: livercirrhosissupport > > > > web address: > > > > http://groups.yahoo.com/group/livercirrhosissupport/ > > > > Quote Link to comment Share on other sites More sharing options...
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