Transplant Athlete
Wednesday, October 03, 2007
  No More Transcons

The results of my recent biopsy are in and they're not good. My original disease is back. Membranoproliferative Glomerulonephritis, Type 1, With Mild to Moderate Global Glumerulosclerosis, and about 10% Cellular Crescents, blah, blah, blah...

I won't be changing the name of this blog to the "Dialysis Athlete" anytime soon. The prognosis is the same as it was in 1986 (It was Deja Vu all over again listening to the Doc): 50% to 60% chance of progression to ESRD (End Stage Renal Disease) within 10 to 15 years, the literature the doctor gave me also shows a 25 to 40% chance of stable renal function, and a 10% chance of "spontaneous improvement". I expect my disease will progress the same way it did the first time around, so I'm thinking a 10 to 15 year run on this kidney.

As it was in the beginning of my ordeal, there's still no treatment for MPGN. However, Aspirin (325 mg Tid) and Persantine (75 mg Tid) have been proven to stabilize renal function for a short period. So I will be trying that for awhile. There are a couple of other treatments that are more aggressive, but the side effects can be nasty and the benefits are questionable.

  1. Prednisone (a corticosteroid) in 120 mg doses every other day for a very long time. If they put me on Prednisone, ABL would divorce me (because of the mood swings), I'd gain 30 to 50 pounds of fat, and I'd be at risk for a whole host of other medical conditions including diabetes.
  2. Swithing from Cellcept to Cyclophosphamide for several years which the doctor says is really nasty and isn't recommended for more than 6 months.
  3. Plasmapheresis, which from what I gather, they take my blood out, wash the plasma, and then give it back to me. I'm guessing this needs to be done frequently, probably much like dialysis.

The good news is that there is no sign of rejection, so they can bring my Cellcept back down (they had raised it right before the biopsy just in case). The Cellcept was causing me all sorts of problems, and may have lowered my Hematocrit.

Speaking of Hematocrit, mine is 27.6, nearly half that of a professional cyclist. If my Anemia doesn't get better in the next month or so, the Doc will most likely put me on Procrit (Synthetic EPO). Good News: The Doc says I can dope. Bad News: The Doc says I can't race. I'm hoping he just means the really long distance events, apparently dehydration and hyponatremia are much more serious now. I'm guessing if I beg, he'll let me do a couple 24 hour races. He said I can still ride and train, wheww! Don't think that Procrit will give me an unfair advantage racing, the insurance companies, and by extension the doctor, will only let my hematocrit get up to 33 or 34% (I forget the actual cut-off value), that number is still well below anyone I'll be racing against, unless I'm at the Transplant Games.

If I had to guess my Hematocrit, I would have said 31 or 32, so that's good news. When I was at 29% back in 1999, I couldn't function, I couldn't work, I couldn't get off the couch. To be at 27.6% and still feel like I can function is a testament to my fitness level.

For those keeping score at home, my serum creatinine is 2.7 (normal is just over 1 and 10 is ESRD).


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I've gone through kidney failure twice. The first time in 2000, my mother donated a kidney; and again in 2008, I'm on dialysis waiting for a breakthrough in immuno-suppression medicines before seeking a new kidney.

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Warning Signs for Kidney Disease:

  • High Blood Pressure
  • Burning or Difficulty when Urinating
  • Frequent Urination at Night
  • Blood in your urine
  • Cola or tea colored urine
  • Swellig of the eyes, ankles, or feet
  • Lower back pain unrelated to physical activity

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