Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 , First I want to welcome you to the gang! It would seem that you would have a lawsuit to me, if nothing else make them pay for the TR, what an awful thing for them to do . Seek legal council right away! Blessings, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2002 Report Share Posted May 13, 2002 , Welcome aboard! I would tell you to seek legal advice if someone has given you a TL without your signed consent. They may or may not be made to pay for the wrong they committed against you. It may be a malpractice. It's worth a try anyways. I am not an attorney, but a paralegal. So, I can't be for certain how it will work for you. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Welcome to you Wanda, this is a terrific group of ladies, they help me so much if I do not even post I read every single one and learn so much from them. Huggs, Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 THANK YOU SO MUCH FOR THE KIND WELCOME. I AM REALLY LOOKING FORWARD TO THIS!!! ) > Welcome to you Wanda, this is a terrific group of ladies, they help me so > much if I do not even post I read every single one and learn so much from > them. > > Huggs, Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Welcome to the list, Wanda! in MI new member hi everyone!! i am new to this group and i have to say that i am very excited about all of this. i am just getting started, so any help or info would be a much needed relief. can anyone explain the buddy list to me? i have sent Dr. Levin all of my dr. reports and scheduled a telephone consultation, so i am waiting. i hope that all of you are doing fine and i hope to get to know everyone. i am also part of another group called justaneverydaymom. everyone over there is wonderful. thank you for letting me join and i will be on later. ) wanda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Hi Rachal, I am out of hopital after my biopsy and everthing went fine, thanks for your message, it was great tohear from so many peolpe who share the same experiences and can give helpful needed advise thanks Heidi -- Re: new member Hi Heidi, I just had a biopsy June 7th, and I just wanted to let you know it was very easy. They gave me an IV to relax me a little, and I was fine. I stayed in the hospital 6 hours after the procedure, and then was supposed to rest for a few days. I didn't have any trouble afterwards w/ pain, so I'll be praying that you won't either! Good Luck! Rachal new member > hi my name is Heidi, > tomorrow I am going in for my biopsy. To say I am a bit nervous is > an understatement. > I have apparently been surrering from iga-nephropathy for at least 12 > years, but the doctors thought I had a recuring kidney infection. My > doctor referred me to the renal unit only 2 weeks ago! They said I > could have this biopsy whenever it suited me, so the sooner the > better I thought. > So I will let you know how it goes > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 Hi Preet. Welcome to the group. I have a niece who weighed about that when she was born. Now, she is a healthy 20-something. Let's hope you won't have to wait the whole 5 years. I guess one way to look at it is that, given the right circumstances, a kidney could become available tomorrow that matches you better than anyone else. It does happen. Most of the members here have mild to moderate renal failure, and a few of us are getting close to needing dialysis. Others have been on dialysis and have since been transplanted. As for me, I have the fistula ready and I'm just waiting. I've had pain like you describe, except sort of going to opposite way. Starting in the front and going into the back. In my case, it seems to be a mild chronic pancreatitis. Maybe it's a medication you're taking. Are you on any blood pressure meds at present? Pierre NEW MEMBER > > Hello, my name is Preet and I have IGAN with blood type O negative. I am 26 > yr old female. I have been on dialysis for a year and half. I started > hemodialysis when I was 4 months pregnant. I delivered at 26 weeks by > emergency c-section, my baby boy was actually at 24 weeks because his eyes > were closed still. He weighed at 490g -- 1 lb. and 1 oz. and after being in > the special care nursery for six and a half months, my baby came home. A > year later he now weighs close to 12 lbs.. I started with hemodialysis and > now am on the cycler at night for 9 hours. I just recently did bloodwork > for the waiting list here in Vancouver, BC. The sad news is there is a long > waiting list for those people with blood type O. I believe around 5 years. > But my time will come and thanks to God I do have better days than most. I > started with very high blood pressure problems with onset of pregnancy and > now finally a year and half later i'm back to normal. I occasionally do > fell light headed and nauseated. However, recently, I have been getting > this horrible swelling like, burning pain which starts in lower back and > comes forward. The burning pain usually lasts like a half hour or so and I > get hot flashes with it. I have discussed this with my doctor but he just > says he's never heard of this before. So it is frustrating sometimes but I > just manage day by day. How are you all coping? And have you heard > anything of this sort of pain? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 Welcome to the group Preet. Glad to hear that you have finally got your son home, what a testing time that must have been for you. I weighed 2lb 2oz when I was born, and I am now 41 and holding my own despite having IGAN, hope this gives you some encouragement for your son. I do get pain, but not in the way you describe, mine is what we call 'flank pain' in the group. It is a stabbing aching type of feeling. Constant pain without an explanation is a real bore, it could as Pierre suggests be something to do with the medication you might be taking, could be worth checking out the side effects on any of them, failing that, I would persist with your GP, these days there really is no reason for anyone to be left in pain this long. I do hope you manage to get some relief and of course answers soon Preet, good luck with everything ok, and I send huge wishes for a healthy progression for your son and yourself. Do keep us posted on your progress if you wish. Best wishes NEW MEMBER Hello, my name is Preet and I have IGAN with blood type O negative. I am 26 yr old female. I have been on dialysis for a year and half. I started hemodialysis when I was 4 months pregnant. I delivered at 26 weeks by emergency c-section, my baby boy was actually at 24 weeks because his eyes were closed still. He weighed at 490g -- 1 lb. and 1 oz. and after being in the special care nursery for six and a half months, my baby came home. A year later he now weighs close to 12 lbs.. I started with hemodialysis and now am on the cycler at night for 9 hours. I just recently did bloodwork for the waiting list here in Vancouver, BC. The sad news is there is a long waiting list for those people with blood type O. I believe around 5 years. But my time will come and thanks to God I do have better days than most. I started with very high blood pressure problems with onset of pregnancy and now finally a year and half later i'm back to normal. I occasionally do fell light headed and nauseated. However, recently, I have been getting this horrible swelling like, burning pain which starts in lower back and comes forward. The burning pain usually lasts like a half hour or so and I get hot flashes with it. I have discussed this with my doctor but he just says he's never heard of this before. So it is frustrating sometimes but I just manage day by day. How are you all coping? And have you heard anything of this sort of pain? _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hi Preet, Congradulations on your baby boy. He is a miracle and gift to you! Have you asked you OB/GYN about the pain? Sometimes female parts are literally a pain! Best Wishes, K. NEW MEMBER > > > Hello, my name is Preet and I have IGAN with blood type O negative. I > am 26 > yr old female. I have been on dialysis for a year and half. I started > hemodialysis when I was 4 months pregnant. I delivered at 26 weeks by > emergency c-section, my baby boy was actually at 24 weeks because his > eyes > were closed still. He weighed at 490g -- 1 lb. and 1 oz. and after > being in > the special care nursery for six and a half months, my baby came home. > A > year later he now weighs close to 12 lbs.. I started with hemodialysis > and > now am on the cycler at night for 9 hours. I just recently did > bloodwork > for the waiting list here in Vancouver, BC. The sad news is there is a > long > waiting list for those people with blood type O. I believe around 5 > years. > But my time will come and thanks to God I do have better days than most. > I > started with very high blood pressure problems with onset of pregnancy > and > now finally a year and half later i'm back to normal. I occasionally do > fell light headed and nauseated. However, recently, I have been getting > this horrible swelling like, burning pain which starts in lower back and > comes forward. The burning pain usually lasts like a half hour or so > and I > get hot flashes with it. I have discussed this with my doctor but he > just > says he's never heard of this before. So it is frustrating sometimes > but I > just manage day by day. How are you all coping? And have you heard > anything of this sort of pain? > > > > _________________________________________________________________ > MSN Photos is the easiest way to share and print your photos: > http://photos.msn.com/support/worldwide.aspx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2002 Report Share Posted July 29, 2002 Welcome to the group. I'm sure many people are taking ramipril. It's a very popular ACE inhibitor, and one that is often used in clinical trials involving nephropathy. We have information on fish oil on www.igan.ca, specifically http://www.igan.ca/id39.htm . I think you will find that among our members, prescribed dosage is all over the place when it comes to fish oil. Pierre new member > Hello, I am a new member. I was diagnosed with igan when i was > pregnant with my first child 10 years ago. My kidney function is > still fine, but a few years ago i started to take tritace 1.25 > (active ingredient, ramipril). Is anyone else taking this > medication? I also would like to know how many fish oil pills are > recommended to take each day and what brand is recommended. > > It is also a relief to finally find other people who suffer from > igan, as up until now i have never met a soul who was diagnosed with > it or anyone i could truly talk to about igan. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2002 Report Share Posted July 30, 2002 Welcome, is it Miriam? I have a friend who's daughter's name is m. A beautiful name and one that I don't hear very often. I take 6 (1000mg) of fish oil per day. I'm not sure if this is the recommended dose but with all of the other medications that I take, 6 is about all I can muster per day and I'm not sure of the brand. You will find this group very helpful, supportive and informed. Welcome... Connie, USA new member Hello, I am a new member. I was diagnosed with igan when i was pregnant with my first child 10 years ago. My kidney function is still fine, but a few years ago i started to take tritace 1.25 (active ingredient, ramipril). Is anyone else taking this medication? I also would like to know how many fish oil pills are recommended to take each day and what brand is recommended. It is also a relief to finally find other people who suffer from igan, as up until now i have never met a soul who was diagnosed with it or anyone i could truly talk to about igan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Welcome to the group . Interesting story, and it sounds like you have a doc with a real personality! I like a doctor with a sense of humour. I had a prostate infection just a couple of months ago. So, I guess you can get those whether you have IgAN or not. Used to play the trumpet too, but that was years ago. If I recall, some people have reported some residual pain in the area of the biopsy. Mine was so long ago now that I really don't recall. I think you can be pretty confident that it isn't the kidney itself hurting, but the muscle tissue (and maybe some nerves) where the needle tube went through. My renal team said vitamin E up to 400 IU, but I guess medical opinions can vary about that. Is the multivitamin a regular one or a special one for kidney patients? The reason I ask is because they tell pre-end stage patients up here not to take over the counter multivitamins. You need special multivitamins that have the right amounts of various things for people with kidney failure, and that don't have any vitamin A in them. Pierre Moderator New member > Hi all, > > Just joined a few days ago, and have been fascinated with all of the > messages and stories. Here's mine if you care to read it: > > I was sent to a nephrologist after finding high blood pressure (224/143) and > blood in the urine during a routine doctor visit for a sinus infection. As > soon as I described my symptoms, my Doc knew that I had IGAN. This was > confirmed with biopsy a couple of months later. My Doc is a real joker, so > when my wife and I went in for the formal diagnosis, he told us with no > qualms that he could ensure without a doubt that my kidneys would last me > the rest of my life. He said he had a surgeon on standby that was ready to > operate. All I had to do was agree to let him amputate both legs at the > knees and one arm at the shoulder. > > As it turns out, I have had this disease since probably sometime in 1995, > but has gone undiagnosed. Even saw a kidney specialist back in '96, who > obviously didn't know that IGAN existed, and thought my prostate was > bleeding. Every time I get a bad cold or flu, I get blood in the urine, > which varies from a light tea color all the way to black as ink on one > occasion. Amazingly, even when my urine was that bad, a doctor I saw said I > probably just had a bladder infection, and prescribed antibotics. The nurse > who took my urine sample nearly had a cow when she saw the color. > > I am a white male, 37 yrs. old and live in n, AR (just across the > bridge from Memphis, TN). There is no history of nephropathy in my family. > I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg > Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have > been advised to stop taking it if it makes me too sleepy to work, which it > does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin > daily. > > My creatinine level has been averaging 3.1 since the first blood test back > in Feb. I'm not sure about the rest of the numbers, since my Doc looks at > the creatinine level moreso than anything else. > > I've been reading with much empathy and sympathy all of the stories of > fatigue, swelling, etc. as I am dealing with these things as well. The main > problem is the fatigue, which makes it difficult even doing the simple > things, such as playing with my 11-month old daughter, playing the trumpet, > cutting the grass.... > > One question: Does anyone out there have ongoing pain in the kidney that > received the biopsy? Ever since the biopsy, my kidney hurts, especially > when I sleep on that side. > > Thanks. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Hi, me and you seem to have the same problems. I was diagnosed with IGA a couple of years ago after a biopsy. I know the pain u feel. I still feel this pain 2 years later. My even hurts if i get to tired or stressed also. Sometimes, it just hurts. I have been to many physicians about this. Because i constantly have UTI infections they usually lay it to that. But believe me this pain is much stronger than a UTI. One pain management physician suggested to me that it would be where the biopsy site grows up around the nerves and this traps the nerves and this causes the pain. He said this is why it hurts when you do a lot of walking because it is like sandpaper rubbing. Another physician said the pain is a result of Nephritis--inflammation of the kidney. Im not sure what to believe. All i know is the pain is there. But a word of warning i have just found out recently that pain medicines can further damage kidneys and cause end stage renal failure sooner. So be careful. I was told NEVER to take arthitis medicine, pain meds, muscle relaxers or any of these meds. If you have an suggestions or ideas what this pain is a result of pls let me know. I thought i was the only one with this problem. Thanks New member Hi all, Just joined a few days ago, and have been fascinated with all of the messages and stories. Here's mine if you care to read it: I was sent to a nephrologist after finding high blood pressure (224/143) and blood in the urine during a routine doctor visit for a sinus infection. As soon as I described my symptoms, my Doc knew that I had IGAN. This was confirmed with biopsy a couple of months later. My Doc is a real joker, so when my wife and I went in for the formal diagnosis, he told us with no qualms that he could ensure without a doubt that my kidneys would last me the rest of my life. He said he had a surgeon on standby that was ready to operate. All I had to do was agree to let him amputate both legs at the knees and one arm at the shoulder. As it turns out, I have had this disease since probably sometime in 1995, but has gone undiagnosed. Even saw a kidney specialist back in '96, who obviously didn't know that IGAN existed, and thought my prostate was bleeding. Every time I get a bad cold or flu, I get blood in the urine, which varies from a light tea color all the way to black as ink on one occasion. Amazingly, even when my urine was that bad, a doctor I saw said I probably just had a bladder infection, and prescribed antibotics. The nurse who took my urine sample nearly had a cow when she saw the color. I am a white male, 37 yrs. old and live in n, AR (just across the bridge from Memphis, TN). There is no history of nephropathy in my family. I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have been advised to stop taking it if it makes me too sleepy to work, which it does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin daily. My creatinine level has been averaging 3.1 since the first blood test back in Feb. I'm not sure about the rest of the numbers, since my Doc looks at the creatinine level moreso than anything else. I've been reading with much empathy and sympathy all of the stories of fatigue, swelling, etc. as I am dealing with these things as well. The main problem is the fatigue, which makes it difficult even doing the simple things, such as playing with my 11-month old daughter, playing the trumpet, cutting the grass.... One question: Does anyone out there have ongoing pain in the kidney that received the biopsy? Ever since the biopsy, my kidney hurts, especially when I sleep on that side. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Dear Welcome to the group. You story is very familiar to many of us here, I particularly relate to the flu and cold scenario. Do you find that it seems to take longer to get rid of colds or flu? I don't get the flu now as I have the flu jab, as advised by my Nephrologist, who by the way, also has a sense of humour, trouble is I don't think he is funny tee hee, as he usually is poking fun at me tee hee, well I guess the guy has to get his own back some way, for all the hassle I give him !!!! Pain at the the site of the biopsy, not for me, but I have had two cysts appear on the area biopsied, but that seems to have abated now. I do have flank pain, as is referred to here in the group by many, but I have had this prior to diagnosis anyway. The fatigue, again a huge problem for many of us, and one which personally frustrates me the most. Anyway good to hear from you. New member Hi all, Just joined a few days ago, and have been fascinated with all of the messages and stories. Here's mine if you care to read it: I was sent to a nephrologist after finding high blood pressure (224/143) and blood in the urine during a routine doctor visit for a sinus infection. As soon as I described my symptoms, my Doc knew that I had IGAN. This was confirmed with biopsy a couple of months later. My Doc is a real joker, so when my wife and I went in for the formal diagnosis, he told us with no qualms that he could ensure without a doubt that my kidneys would last me the rest of my life. He said he had a surgeon on standby that was ready to operate. All I had to do was agree to let him amputate both legs at the knees and one arm at the shoulder. As it turns out, I have had this disease since probably sometime in 1995, but has gone undiagnosed. Even saw a kidney specialist back in '96, who obviously didn't know that IGAN existed, and thought my prostate was bleeding. Every time I get a bad cold or flu, I get blood in the urine, which varies from a light tea color all the way to black as ink on one occasion. Amazingly, even when my urine was that bad, a doctor I saw said I probably just had a bladder infection, and prescribed antibotics. The nurse who took my urine sample nearly had a cow when she saw the color. I am a white male, 37 yrs. old and live in n, AR (just across the bridge from Memphis, TN). There is no history of nephropathy in my family. I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have been advised to stop taking it if it makes me too sleepy to work, which it does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin daily. My creatinine level has been averaging 3.1 since the first blood test back in Feb. I'm not sure about the rest of the numbers, since my Doc looks at the creatinine level moreso than anything else. I've been reading with much empathy and sympathy all of the stories of fatigue, swelling, etc. as I am dealing with these things as well. The main problem is the fatigue, which makes it difficult even doing the simple things, such as playing with my 11-month old daughter, playing the trumpet, cutting the grass.... One question: Does anyone out there have ongoing pain in the kidney that received the biopsy? Ever since the biopsy, my kidney hurts, especially when I sleep on that side. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 Hi , How long is it since the biopsy? I think I would mention it to your Doctor, I seem to remember I was told that it is possible that a biopsy can leave a scar, which could be an irritant. Re the pain I had it immediately they did it and I was told by the surrounding Doctors it wasn't possible but when it was obvious that I wasn't 'making it up' they gave me pain killers. I had very strong pain for a couple of weeks after and had to take strong pain killers to calm it down. I have flank pain or needle like jabs now and again but no pain because of the biopsy though. I do feel the kidney is very sensitive and possibly more so than the Docs thought in my case. Sally. PS Don't forget to vote in the two polls going on at the moment. New member Hi all, Just joined a few days ago, and have been fascinated with all of the messages and stories. Here's mine if you care to read it: I was sent to a nephrologist after finding high blood pressure (224/143) and blood in the urine during a routine doctor visit for a sinus infection. As soon as I described my symptoms, my Doc knew that I had IGAN. This was confirmed with biopsy a couple of months later. My Doc is a real joker, so when my wife and I went in for the formal diagnosis, he told us with no qualms that he could ensure without a doubt that my kidneys would last me the rest of my life. He said he had a surgeon on standby that was ready to operate. All I had to do was agree to let him amputate both legs at the knees and one arm at the shoulder. As it turns out, I have had this disease since probably sometime in 1995, but has gone undiagnosed. Even saw a kidney specialist back in '96, who obviously didn't know that IGAN existed, and thought my prostate was bleeding. Every time I get a bad cold or flu, I get blood in the urine, which varies from a light tea color all the way to black as ink on one occasion. Amazingly, even when my urine was that bad, a doctor I saw said I probably just had a bladder infection, and prescribed antibotics. The nurse who took my urine sample nearly had a cow when she saw the color. I am a white male, 37 yrs. old and live in n, AR (just across the bridge from Memphis, TN). There is no history of nephropathy in my family. I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have been advised to stop taking it if it makes me too sleepy to work, which it does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin daily. My creatinine level has been averaging 3.1 since the first blood test back in Feb. I'm not sure about the rest of the numbers, since my Doc looks at the creatinine level moreso than anything else. I've been reading with much empathy and sympathy all of the stories of fatigue, swelling, etc. as I am dealing with these things as well. The main problem is the fatigue, which makes it difficult even doing the simple things, such as playing with my 11-month old daughter, playing the trumpet, cutting the grass.... One question: Does anyone out there have ongoing pain in the kidney that received the biopsy? Ever since the biopsy, my kidney hurts, especially when I sleep on that side. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 Pierre, Thanks for the response. My doctor is from Spain, and his broken English makes him even funnier. The pain I get is not severe but merely troubling, since I never had pain there until the biopsy. My doctor hasn't really given me any guidelines for vitamin use; I told him about the fatigue, and he said that was mainly caused by all of the meds he put me on. He sent me to the lab for a CBC, but I was not shown to be anemic. He told me to get an over-the-counter multivitamin to help increase energy. The only reason I'm taking the fish oil and vitamin E is based on articles I've seen that say they can be helpful in slowing down the progression of the disease. I'll talk to my doctor about this next time I see him. Re: New member Welcome to the group . Interesting story, and it sounds like you have a doc with a real personality! I like a doctor with a sense of humour. I had a prostate infection just a couple of months ago. So, I guess you can get those whether you have IgAN or not. Used to play the trumpet too, but that was years ago. If I recall, some people have reported some residual pain in the area of the biopsy. Mine was so long ago now that I really don't recall. I think you can be pretty confident that it isn't the kidney itself hurting, but the muscle tissue (and maybe some nerves) where the needle tube went through. My renal team said vitamin E up to 400 IU, but I guess medical opinions can vary about that. Is the multivitamin a regular one or a special one for kidney patients? The reason I ask is because they tell pre-end stage patients up here not to take over the counter multivitamins. You need special multivitamins that have the right amounts of various things for people with kidney failure, and that don't have any vitamin A in them. Pierre Moderator New member > Hi all, > > Just joined a few days ago, and have been fascinated with all of the > messages and stories. Here's mine if you care to read it: > > I was sent to a nephrologist after finding high blood pressure (224/143) and > blood in the urine during a routine doctor visit for a sinus infection. As > soon as I described my symptoms, my Doc knew that I had IGAN. This was > confirmed with biopsy a couple of months later. My Doc is a real joker, so > when my wife and I went in for the formal diagnosis, he told us with no > qualms that he could ensure without a doubt that my kidneys would last me > the rest of my life. He said he had a surgeon on standby that was ready to > operate. All I had to do was agree to let him amputate both legs at the > knees and one arm at the shoulder. > > As it turns out, I have had this disease since probably sometime in 1995, > but has gone undiagnosed. Even saw a kidney specialist back in '96, who > obviously didn't know that IGAN existed, and thought my prostate was > bleeding. Every time I get a bad cold or flu, I get blood in the urine, > which varies from a light tea color all the way to black as ink on one > occasion. Amazingly, even when my urine was that bad, a doctor I saw said I > probably just had a bladder infection, and prescribed antibotics. The nurse > who took my urine sample nearly had a cow when she saw the color. > > I am a white male, 37 yrs. old and live in n, AR (just across the > bridge from Memphis, TN). There is no history of nephropathy in my family. > I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg > Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have > been advised to stop taking it if it makes me too sleepy to work, which it > does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin > daily. > > My creatinine level has been averaging 3.1 since the first blood test back > in Feb. I'm not sure about the rest of the numbers, since my Doc looks at > the creatinine level moreso than anything else. > > I've been reading with much empathy and sympathy all of the stories of > fatigue, swelling, etc. as I am dealing with these things as well. The main > problem is the fatigue, which makes it difficult even doing the simple > things, such as playing with my 11-month old daughter, playing the trumpet, > cutting the grass.... > > One question: Does anyone out there have ongoing pain in the kidney that > received the biopsy? Ever since the biopsy, my kidney hurts, especially > when I sleep on that side. > > Thanks. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 Hi Sally, The biopsy was Feb of this year. The doctor who performed mine told me that he had done over 200 of them without any complications. As luck would have it, I had internal bleeding afterwards, and as a result had severe pain to the point of screaming and blacking out. They did a CAT scan to confirm the bleeding, and finally were persuaded to give me a low dose of morphine, which took the edge off while the bleeding subsided and absorbed into the surrounding tissue. This was just after one of the nurses told me to stop screaming, that I was scaring other patients!!!! I was in the hospital for 3 days instead of the promised 8 hours. New member Hi all, Just joined a few days ago, and have been fascinated with all of the messages and stories. Here's mine if you care to read it: I was sent to a nephrologist after finding high blood pressure (224/143) and blood in the urine during a routine doctor visit for a sinus infection. As soon as I described my symptoms, my Doc knew that I had IGAN. This was confirmed with biopsy a couple of months later. My Doc is a real joker, so when my wife and I went in for the formal diagnosis, he told us with no qualms that he could ensure without a doubt that my kidneys would last me the rest of my life. He said he had a surgeon on standby that was ready to operate. All I had to do was agree to let him amputate both legs at the knees and one arm at the shoulder. As it turns out, I have had this disease since probably sometime in 1995, but has gone undiagnosed. Even saw a kidney specialist back in '96, who obviously didn't know that IGAN existed, and thought my prostate was bleeding. Every time I get a bad cold or flu, I get blood in the urine, which varies from a light tea color all the way to black as ink on one occasion. Amazingly, even when my urine was that bad, a doctor I saw said I probably just had a bladder infection, and prescribed antibotics. The nurse who took my urine sample nearly had a cow when she saw the color. I am a white male, 37 yrs. old and live in n, AR (just across the bridge from Memphis, TN). There is no history of nephropathy in my family. I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have been advised to stop taking it if it makes me too sleepy to work, which it does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin daily. My creatinine level has been averaging 3.1 since the first blood test back in Feb. I'm not sure about the rest of the numbers, since my Doc looks at the creatinine level moreso than anything else. I've been reading with much empathy and sympathy all of the stories of fatigue, swelling, etc. as I am dealing with these things as well. The main problem is the fatigue, which makes it difficult even doing the simple things, such as playing with my 11-month old daughter, playing the trumpet, cutting the grass.... One question: Does anyone out there have ongoing pain in the kidney that received the biopsy? Ever since the biopsy, my kidney hurts, especially when I sleep on that side. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 Hi , I usually get colds and flu seasonally, and for the past 6 years running, have had a bad cold/flu in late Jan/early Feb. The black urine occurrence was in Feb '96. I don't have any trouble getting over them, however. For the most part, I don't see any symptoms other than the fatigue. My urine usually looks OK except when I'm otherwise sick. All, I've read some messages where people are talking about their " last " biopsy, so obviously they've had more than one. I, for one, don't plan to ever have another. Am I fooling myself that I won't need any more? I'm a wimp; I don't want to end up in the hospital again or with the excrutiating pain. New member Hi all, Just joined a few days ago, and have been fascinated with all of the messages and stories. Here's mine if you care to read it: I was sent to a nephrologist after finding high blood pressure (224/143) and blood in the urine during a routine doctor visit for a sinus infection. As soon as I described my symptoms, my Doc knew that I had IGAN. This was confirmed with biopsy a couple of months later. My Doc is a real joker, so when my wife and I went in for the formal diagnosis, he told us with no qualms that he could ensure without a doubt that my kidneys would last me the rest of my life. He said he had a surgeon on standby that was ready to operate. All I had to do was agree to let him amputate both legs at the knees and one arm at the shoulder. As it turns out, I have had this disease since probably sometime in 1995, but has gone undiagnosed. Even saw a kidney specialist back in '96, who obviously didn't know that IGAN existed, and thought my prostate was bleeding. Every time I get a bad cold or flu, I get blood in the urine, which varies from a light tea color all the way to black as ink on one occasion. Amazingly, even when my urine was that bad, a doctor I saw said I probably just had a bladder infection, and prescribed antibotics. The nurse who took my urine sample nearly had a cow when she saw the color. I am a white male, 37 yrs. old and live in n, AR (just across the bridge from Memphis, TN). There is no history of nephropathy in my family. I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have been advised to stop taking it if it makes me too sleepy to work, which it does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin daily. My creatinine level has been averaging 3.1 since the first blood test back in Feb. I'm not sure about the rest of the numbers, since my Doc looks at the creatinine level moreso than anything else. I've been reading with much empathy and sympathy all of the stories of fatigue, swelling, etc. as I am dealing with these things as well. The main problem is the fatigue, which makes it difficult even doing the simple things, such as playing with my 11-month old daughter, playing the trumpet, cutting the grass.... One question: Does anyone out there have ongoing pain in the kidney that received the biopsy? Ever since the biopsy, my kidney hurts, especially when I sleep on that side. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 It's pretty rare to have a second biopsy during the cours of IgAN, . The vast majority of people have just had one. There's usually little to be gained by going in again, except more risk to the kidney. Pierre RE: New member > Hi , > > I usually get colds and flu seasonally, and for the past 6 years running, > have had a bad cold/flu in late Jan/early Feb. The black urine occurrence > was in Feb '96. I don't have any trouble getting over them, however. For the > most part, I don't see any symptoms other than the fatigue. My urine usually > looks OK except when I'm otherwise sick. > > All, > > I've read some messages where people are talking about their " last " biopsy, > so obviously they've had more than one. I, for one, don't plan to ever have > another. Am I fooling myself that I won't need any more? I'm a wimp; I don't > want to end up in the hospital again or with the excrutiating pain. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 poor you..........its hardly likely that you'd be screaming if you weren't in agony and there's nothing like really bad kidney pain to make you scream! Unfortunately these kinds of situations are not uncommon to some of us. From what you've said though, I think you've got your answers i.e. it sounds very probable that it has caused your subsequent pain and Feb isn't that long ago. I would definitely mention it to your Neph if I was you.......particularly as you didn't have pain before. I was kept in for 24 hours flat on my back for 12 and mine was done by a 'Virgin Registrar' I was told I was her first after I was lying in position ready and waiting.........I have to say though she did it well and no complaints as to her bit and someone's got to be the first.......it always seems to be me though, funny that! All the best Sally. New member Hi all, Just joined a few days ago, and have been fascinated with all of the messages and stories. Here's mine if you care to read it: I was sent to a nephrologist after finding high blood pressure (224/143) and blood in the urine during a routine doctor visit for a sinus infection. As soon as I described my symptoms, my Doc knew that I had IGAN. This was confirmed with biopsy a couple of months later. My Doc is a real joker, so when my wife and I went in for the formal diagnosis, he told us with no qualms that he could ensure without a doubt that my kidneys would last me the rest of my life. He said he had a surgeon on standby that was ready to operate. All I had to do was agree to let him amputate both legs at the knees and one arm at the shoulder. As it turns out, I have had this disease since probably sometime in 1995, but has gone undiagnosed. Even saw a kidney specialist back in '96, who obviously didn't know that IGAN existed, and thought my prostate was bleeding. Every time I get a bad cold or flu, I get blood in the urine, which varies from a light tea color all the way to black as ink on one occasion. Amazingly, even when my urine was that bad, a doctor I saw said I probably just had a bladder infection, and prescribed antibotics. The nurse who took my urine sample nearly had a cow when she saw the color. I am a white male, 37 yrs. old and live in n, AR (just across the bridge from Memphis, TN). There is no history of nephropathy in my family. I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have been advised to stop taking it if it makes me too sleepy to work, which it does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin daily. My creatinine level has been averaging 3.1 since the first blood test back in Feb. I'm not sure about the rest of the numbers, since my Doc looks at the creatinine level moreso than anything else. I've been reading with much empathy and sympathy all of the stories of fatigue, swelling, etc. as I am dealing with these things as well. The main problem is the fatigue, which makes it difficult even doing the simple things, such as playing with my 11-month old daughter, playing the trumpet, cutting the grass.... One question: Does anyone out there have ongoing pain in the kidney that received the biopsy? Ever since the biopsy, my kidney hurts, especially when I sleep on that side. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Pierre, Good question , and I'm glad you confirmed my thoughts Pierre, because I have always believed that since there is some risk to the patient of losing the biopsied kidney (through bleeding). I questioned what additional information could be gained from a second one. Thanks for the info. Connie, USA Re: New member It's pretty rare to have a second biopsy during the cours of IgAN, . The vast majority of people have just had one. There's usually little to be gained by going in again, except more risk to the kidney. Pierre RE: New member > Hi , > > I usually get colds and flu seasonally, and for the past 6 years running, > have had a bad cold/flu in late Jan/early Feb. The black urine occurrence > was in Feb '96. I don't have any trouble getting over them, however. For the > most part, I don't see any symptoms other than the fatigue. My urine usually > looks OK except when I'm otherwise sick. > > All, > > I've read some messages where people are talking about their " last " biopsy, > so obviously they've had more than one. I, for one, don't plan to ever have > another. Am I fooling myself that I won't need any more? I'm a wimp; I don't > want to end up in the hospital again or with the excrutiating pain. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Reading about biopsy's made me think about when I was in the hospital with mine. Due to a mix up, the hospital had me on a renal, diabetic, heart diet...if you can imagine eating the back of a tissue box for dinner. Well when my daughter came in to see me I convinced her to go down to the cafeteria and " steal " me some salt packets. Well she went to the cafeteria and they did not have any salt packets so she decided to take a HUGH salt shaker from one of the tables. Well it was so large that it did not fit into the drawer of the rolling table that slides across your bed. So I decided to put it under my covers beside my left leg. Well I was trying to be really sly because I knew that they would be periodically checking the biopsy site on the left side, so I moved it beside the right leg. As most of you know that have had a biopsy, I had to lay flat for 12 hours straight. Hours later, I called the nurse to use the bedpan to pee and the nurse whipped those covers off of me and there to her surprise (and mine) was the HUGH salt shaker from the cafeteria!!! She screamed, " how did this get here? " I was just as surprised as her that I had forgotten about it under the covers that I said with an air of indignity, " IS THAT SALT?, I DON " T KNOW HOW IT GOT THERE! " She gave me a dirty look and put it on the sliding table. Yea, I thought, she didn't confiscate my salt, I'm as happy as a lark. (Now I can't wait for the next meal!) I was about ready to call the nurse to take away the bedpan, to my surprise, my brother, his wife and my male cousin walk in the door to visit me. Well I thought, I can pull this off, I'm all covered up, they know that I have to lay flat, they'll never know that I'm laying here on a bedpan while they're talking to me. I'll just lay her until they leave. After all, I am sick right, they surely won't stay long. Well lets just say that I can't believe that they didn't get a poker game going!! After it seemed like hours, my sister in law finally leaned close to me and said you look like you're in pain, does your back hurt? I whispered back, " yeah, I'm in pain alright, " you're going to have to leave for a moment, because I've been on a bedpan since before you got here, and I now have a permanant ring, so you might say I have a pain in the a--. As they walked out to the hall while the nurse was helping me, I could hear the roar of laughter, as my sister-in-law filled the guys in on my situation and I'm sure she didn't leave anything out!! I thought, it figures... this was my punishment for asking my daughter to " steal " me salt in the first place!!! Connie, USA New member Hi all, Just joined a few days ago, and have been fascinated with all of the messages and stories. Here's mine if you care to read it: I was sent to a nephrologist after finding high blood pressure (224/143) and blood in the urine during a routine doctor visit for a sinus infection. As soon as I described my symptoms, my Doc knew that I had IGAN. This was confirmed with biopsy a couple of months later. My Doc is a real joker, so when my wife and I went in for the formal diagnosis, he told us with no qualms that he could ensure without a doubt that my kidneys would last me the rest of my life. He said he had a surgeon on standby that was ready to operate. All I had to do was agree to let him amputate both legs at the knees and one arm at the shoulder. As it turns out, I have had this disease since probably sometime in 1995, but has gone undiagnosed. Even saw a kidney specialist back in '96, who obviously didn't know that IGAN existed, and thought my prostate was bleeding. Every time I get a bad cold or flu, I get blood in the urine, which varies from a light tea color all the way to black as ink on one occasion. Amazingly, even when my urine was that bad, a doctor I saw said I probably just had a bladder infection, and prescribed antibotics. The nurse who took my urine sample nearly had a cow when she saw the color. I am a white male, 37 yrs. old and live in n, AR (just across the bridge from Memphis, TN). There is no history of nephropathy in my family. I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have been advised to stop taking it if it makes me too sleepy to work, which it does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin daily. My creatinine level has been averaging 3.1 since the first blood test back in Feb. I'm not sure about the rest of the numbers, since my Doc looks at the creatinine level moreso than anything else. I've been reading with much empathy and sympathy all of the stories of fatigue, swelling, etc. as I am dealing with these things as well. The main problem is the fatigue, which makes it difficult even doing the simple things, such as playing with my 11-month old daughter, playing the trumpet, cutting the grass.... One question: Does anyone out there have ongoing pain in the kidney that received the biopsy? Ever since the biopsy, my kidney hurts, especially when I sleep on that side. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Sally, To be the first with a Virgin Registrar would be my kind of luck...that normally happens to me at the Gyno's office...Makes my day as you can imagine!!! ( Connie, USA New member Hi all, Just joined a few days ago, and have been fascinated with all of the messages and stories. Here's mine if you care to read it: I was sent to a nephrologist after finding high blood pressure (224/143) and blood in the urine during a routine doctor visit for a sinus infection. As soon as I described my symptoms, my Doc knew that I had IGAN. This was confirmed with biopsy a couple of months later. My Doc is a real joker, so when my wife and I went in for the formal diagnosis, he told us with no qualms that he could ensure without a doubt that my kidneys would last me the rest of my life. He said he had a surgeon on standby that was ready to operate. All I had to do was agree to let him amputate both legs at the knees and one arm at the shoulder. As it turns out, I have had this disease since probably sometime in 1995, but has gone undiagnosed. Even saw a kidney specialist back in '96, who obviously didn't know that IGAN existed, and thought my prostate was bleeding. Every time I get a bad cold or flu, I get blood in the urine, which varies from a light tea color all the way to black as ink on one occasion. Amazingly, even when my urine was that bad, a doctor I saw said I probably just had a bladder infection, and prescribed antibotics. The nurse who took my urine sample nearly had a cow when she saw the color. I am a white male, 37 yrs. old and live in n, AR (just across the bridge from Memphis, TN). There is no history of nephropathy in my family. I am on 10mg Monopril twice daily, 40mg Furosemide twice daily and 5mg Norvasc once daily. I was also on .2mg Clonodine 3 times daily, but have been advised to stop taking it if it makes me too sleepy to work, which it does. I also take 2000mg fish oil, 1600 IU vitamin E, and a multi-vitamin daily. My creatinine level has been averaging 3.1 since the first blood test back in Feb. I'm not sure about the rest of the numbers, since my Doc looks at the creatinine level moreso than anything else. I've been reading with much empathy and sympathy all of the stories of fatigue, swelling, etc. as I am dealing with these things as well. The main problem is the fatigue, which makes it difficult even doing the simple things, such as playing with my 11-month old daughter, playing the trumpet, cutting the grass.... One question: Does anyone out there have ongoing pain in the kidney that received the biopsy? Ever since the biopsy, my kidney hurts, especially when I sleep on that side. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Welcome to the group jeffrey. We can probably help to some extent. What are your questions? Pierre new member > Hi my name is jeffrey and i have been diagnosed with iga from a > biopsy back in march 2000. Like every one I have alot of questions > concerning test results etc.CAN ANY ONE HELP? Thanks > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 welcome to the list. i am so very sorry to hear about the tragic loss of your son. my heart goes out to you. you've joined a list of very caring and loving gals and guys. i've only been here about a week, and already i'm blown away by their true concern for one another. you're in very good company. welcome!!! Luv & Hugz, Lindy Lou"You can never be too rich, too thin or have enough Barbies! My name is Carlotta. I live in Cincinnati, Ohio. I have been suffering for about 15 years with fibro. It has been out of control for about 5 years now. I was diagnosed by a rhumatologist (sp) and then she said she no longer treats fibro? Anyway it took over ten years of testing and different doctors before I was diagnosed. I lost my 18 year old son on 7/1/98. He was stabbed and killed in a fight. Since then my life has changed and my fibro got even worse. Some days I'm convinced I must have cancer due to the pain. I joined to try and get some coping tips or learn new things. I do take aquatic therapy occasionally and need to get back. It helped quite a bit. I also have to take pain medicine and muscle relaxers in addition to sleep meds. The cold weather is terrible for me! Carlotta - lcarlotta@... Cincinnati, Ohio Quote Link to comment Share on other sites More sharing options...
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