Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 HI , I would say an eight year run is not too bad. I always tease my Neph and tell him I am on the 10 year plan, but the 10 year clock never starts ticking so it is always 10 more years from wherever I am ;-) It is hard to believe your first Neph was not concerned about triglycerides that high! Did you get your triglycerides down with a statin drug? How long did it take you from 3 to 6? I did take math up to calculus in college, and I realize that it took you 8 years to get from 1.7 to transplant, but I believe in the " new math " and so the correct answer for how long it took your creatinine to get from 3 to 6 is still 10 years :-) Then I can use you as my example of how it is possible to drag this out another 10 years! Can you tell I have a stubborn streak in me????? Thanks for giving us a glimpse of timeline for you . In a message dated 7/29/2004 5:32:12 PM Pacific Daylight Time, garymattcohen@... writes: > Going through some old records today, and I found lab results from 1996. > Here are the results, and a view even further back: > > Creatinine: 1.7 > Cholesterol: 227 > HDL: 36 > LDL: 136 (Ok, so that reading alone was higher than my last total reading!) > Tryglycerides: 276 (more on that in a second) > BUN: 28 > > That's January 1996, and I had been seeing my current neph for about 15 > months at this point. Here's why I say a good neph is very important - when I > started to see her (September 1994) my tryglycerides were 756. WOW! I should get > an award for that number. I guess my previous neph was not too worked than > my number was at least 5 times what a good reading should be (hence the > " previous " part of that). > > It took 8 years for my creatinine to crash the 6's from that point to my tx > in December 2003. I think that's not too bad. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hi , That's very interesting. For me, it took exactly nine years for my kidneys to go from 50% to dialysis. It seems like a timeframe that is very common, even if it's not written in stone. Some of us may get diagnosed much earlier just because we happen to have a little blood in the urine, and someone happens to find it. But from that 50% kidney function point, a decade or less seems to be the timeframe most people are looking at. For me that was 1993, when I had my biopsy, until 2002. Unfortunately, I don't have any lab records from 1993 to refer to, only my memory, but I clearly recall my nephrologist giving me the news six weeks after the biopsy, and saying I had lost half of my kidney function but that my BUN was near normal. In terms of prognosis, he wasn't very specific, saying it could be anywhere from 5 to 25 years, or never, or that it could theoretically go even sooner. However, he did seem to hang his hat on the 10 year number, and that turned out to be almost exactly right. My main risk factor for progression at that point, ie. the biopsy, in retrospect, seems to have been the extensive glomerulosclerosis I had, and the hypertension, which was just coming on at about that time. Later on, my last pre-dialysis neph predicted 18 months before dialysis, and she also turned out to be almost exactly right to the day. I certainly agree that a good neph is important, but I'm not sure how I would define " good " . One limitation on that for many people is that, there may only be a single nephrologist available where they live. That was the case in the small city I lived in at the time of my biopsy. My main beef with nephrologists (I've had 4 pre-dialysis, not counting one who was an internist but not an actual nephrologist) - but not because I switched on purpose), is that, like many specialists who are in high demand, they tend to prescribe easily enough, but then they don't really want to deal with side effects and that sort of thing. I have no complaints about the 4 or 5 nephs that rotate on a regular basis in my dialysis centre. They are outstanding in their management of us dialysis patients. I still have the sneaking suspicion that it's not so much the inflammation activity of the IgAN that does our kidneys in down from the 50% point, but rather the hypertension and the hyperfiltration in the kidneys themselves. For those who aren't familiar with the word hyperfiltration, it just means that our kidneys try to maintain 100% kidney function by having each nephron work harder to compensate for the lost kidney function due to scarring. It's a strategy that works in the short to medium term, but in the long term, it's bound to wear those nephrons out faster. Pierre Old Lab Results > Going through some old records today, and I found lab results from 1996. Here are the results, and a view even further back: > > Creatinine: 1.7 > Cholesterol: 227 > HDL: 36 > LDL: 136 (Ok, so that reading alone was higher than my last total reading!) > Tryglycerides: 276 (more on that in a second) > BUN: 28 > > That's January 1996, and I had been seeing my current neph for about 15 months at this point. Here's why I say a good neph is very important - when I started to see her (September 1994) my tryglycerides were 756. WOW! I should get an award for that number. I guess my previous neph was not too worked than my number was at least 5 times what a good reading should be (hence the " previous " part of that). > > It took 8 years for my creatinine to crash the 6's from that point to my tx in December 2003. I think that's not too bad. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Thanks . If I can hold out that long, I can at least get my daughter through her undergraduate work, but I am still shooting for my 10 more years :-) In a message dated 7/30/2004 10:54:10 AM Pacific Daylight Time, garymattcohen@... writes: > So my best guess for going from 3 to 6 is about 2 to 2 1/2 years. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 : I also cannot believe that about my first neph. The sad part was that I only found out because my current neph had asked for my file, and there were the lab results! All he had me on was lisinopril and fish oil. The big decrease in tryglycerides was not from a statin, but from actually following a rmodified renal diet. I went on statins about 2 years later (1998 or so) and am still on them now. I'm going to see if I can find some more old bloodwork to see how long the " creatinine curve " took. Going from memory, which I have to say is not always the best for me), I can remember a creatinine of 2.x in 2001, and of course the Cellcept actually improved my creatinine for a while in 2002. I think that I crossed the 3.x number in 2001 for the first time. That was when we started to discuss the tx (2001). So my best guess for going from 3 to 6 is about 2 to 2 1/2 years. W4JC@... wrote: HI , I would say an eight year run is not too bad. I always tease my Neph and tell him I am on the 10 year plan, but the 10 year clock never starts ticking so it is always 10 more years from wherever I am ;-) It is hard to believe your first Neph was not concerned about triglycerides that high! Did you get your triglycerides down with a statin drug? How long did it take you from 3 to 6? I did take math up to calculus in college, and I realize that it took you 8 years to get from 1.7 to transplant, but I believe in the " new math " and so the correct answer for how long it took your creatinine to get from 3 to 6 is still 10 years :-) Then I can use you as my example of how it is possible to drag this out another 10 years! Can you tell I have a stubborn streak in me????? Thanks for giving us a glimpse of timeline for you . In a message dated 7/29/2004 5:32:12 PM Pacific Daylight Time, garymattcohen@... writes: > Going through some old records today, and I found lab results from 1996. > Here are the results, and a view even further back: > > Creatinine: 1.7 > Cholesterol: 227 > HDL: 36 > LDL: 136 (Ok, so that reading alone was higher than my last total reading!) > Tryglycerides: 276 (more on that in a second) > BUN: 28 > > That's January 1996, and I had been seeing my current neph for about 15 > months at this point. Here's why I say a good neph is very important - when I > started to see her (September 1994) my tryglycerides were 756. WOW! I should get > an award for that number. I guess my previous neph was not too worked than > my number was at least 5 times what a good reading should be (hence the > " previous " part of that). > > It took 8 years for my creatinine to crash the 6's from that point to my tx > in December 2003. I think that's not too bad. > > Quote Link to comment Share on other sites More sharing options...
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