Guest guest Posted October 24, 2001 Report Share Posted October 24, 2001 Hi Pierre in one of your responses to one of my questions you said that you would most likely be on dialysis in 1 to 2 years. You also said that you are currently around 25% function. My nephrologist often tells me that many people can live a normal life with as little as 10% function. Are you expecting to lose 15% of your kidney function over the next year or two, or do you think people often have to start dialysis much sooner than 10%? My last test showed my creatine clearance to be 55 or 55% function I guess. My blood Creatine was 1.9. What is yours Pierre? Thanks for all of your shared knowledge Pierre and others. Sometimes it is hard to believe how hard dealing with this disease would be without all of your help. JOhn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 Hi Pierre, My question is related also... Do you mean by 25% function that 75% of your kidney has been scarred? If yes, I am in the same situation according to biopsy which was taken only from the other kidney. Otherwise my creatine clearance is 50 and creatine 1.8. What I am worried about now that I have noticed that my diastolic Bp is going up. It has swang between 85 and 95 more and more during the last two week. In the beginning I though that it might be due to the fact that I am having a little rough period in my life but I guess it may also be just other things related to the desease. At the moment I am on ACE 20g and Lasix 40g, and wonder how soon I should contact my doctor in order to ask some additional medication to get the Bp down? I would be grateful for any answers. regards, Paivi >From: johnrolesky@... >Reply-To: iga-nephropathy >To: iga-nephropathy >Subject: A question for Pierre >Date: Thu, 25 Oct 2001 02:18:13 -0000 > >Hi Pierre in one of your responses to one of my questions you said >that you would most likely be on dialysis in 1 to 2 years. You also >said that you are currently around 25% function. My nephrologist >often tells me that many people can live a normal life with as little >as 10% function. Are you expecting to lose 15% of your kidney >function over the next year or two, or do you think people often have >to start dialysis much sooner than 10%? My last test showed my >creatine clearance to be 55 or 55% function I guess. My blood >Creatine was 1.9. What is yours Pierre? > >Thanks for all of your shared knowledge Pierre and others. Sometimes >it is hard to believe how hard dealing with this disease would be >without all of your help. > >JOhn > Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 Hi . My serum creatinine is about 340 umol/L, which is roughly 3.8 mg/dl in U.S. measures. Last May, my nephrologist said that I would likely need dialysis within 18 months. By that time, at the current rate of decline, that would put my serum creatinine somewhere between 500 and 600 (5.5 to 6.8 in the U.S.). But I'm 5'3 " and weigh 120 lbs. So, 600 for me might be equivalent to 800 for a bigger guy. She said it would be a miracle if I went more than 2 years, but that miracles do happen. Decline tends to get faster the worse you get, so a timeline is a little hard to predict. I started showing the symptoms of more advanced renal failure about a year ago - things going out of whack like phosphorus, potassium, parathyroid hormone, etc. When that happens, you know end-stage is inevitable. When a person needs dialysis or transplant depends on the symptoms, but generally, it's needed when kidney function is about 10 to 15% - usually closer to 10%. I was 1.9 about 1996 - but you can't make predictions based on that. Pierre A question for Pierre > Hi Pierre in one of your responses to one of my questions you said > that you would most likely be on dialysis in 1 to 2 years. You also > said that you are currently around 25% function. My nephrologist > often tells me that many people can live a normal life with as little > as 10% function. Are you expecting to lose 15% of your kidney > function over the next year or two, or do you think people often have > to start dialysis much sooner than 10%? My last test showed my > creatine clearance to be 55 or 55% function I guess. My blood > Creatine was 1.9. What is yours Pierre? > > Thanks for all of your shared knowledge Pierre and others. Sometimes > it is hard to believe how hard dealing with this disease would be > without all of your help. > > JOhn > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 Hi Paivi. No, percentage of kidney function and percentage of scarring are not the same thing. If your biopsy found 75% scarring, that means that 75% of the glomeruli showed some scarring. Even when I had my biopsy back in 1993, I had scarring to over 2/3 of the glomeruli, but my kidney function was better than 50%. Based on your creatinine numbers, I would guess that you are somewhere near 50% kidney function, depending on how big you are. About your BP, I'm not a doctor, but it's hard to say. How long ago did you start those meds, and when did you last see your nephrologist? When is your next appointment? BP goes up and down all the time, and unless it's dramatically-high, it can usually wait in between follow-up visits. When a nephrologist prescribes a new BP med or changes anything in the dosage, they usually schedule you for a follow-up appointment at the appropriate interval, sooner than they would for just the normal follow-up. Depending on how high your BP is, that could be follow-up from 1 to 3 months. It takes a couple of weeks for BP meds to have their full, stable effect. For example, when I was seeing my neph every 6 months, if she happened to change anything in my BP meds, she would want to see me in 2 months instead, and she would tell me to see my family doctor to check the BP in a month. If it gets unusually high for you however, you should call your doctor just to be safe. Pierre Re: A question for Pierre Hi Pierre, My question is related also... Do you mean by 25% function that 75% of your kidney has been scarred? If yes, I am in the same situation according to biopsy which was taken only from the other kidney. Otherwise my creatine clearance is 50 and creatine 1.8. What I am worried about now that I have noticed that my diastolic Bp is going up. It has swang between 85 and 95 more and more during the last two week. In the beginning I though that it might be due to the fact that I am having a little rough period in my life but I guess it may also be just other things related to the desease. At the moment I am on ACE 20g and Lasix 40g, and wonder how soon I should contact my doctor in order to ask some additional medication to get the Bp down? I would be grateful for any answers. regards, Paivi Quote Link to comment Share on other sites More sharing options...
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