I was hoping to avoid this entirely. I figured that if I didn’t say anything, people wouldn’t start worrying about something they didn’t need to worry about. But as word has leaked, the accuracy of the reports on the state of my health has degraded to the point that yesterday I received an email message from someone who asked, “So, how long do you have?”
Well, since I’m 42 years old now, I would guess I’ve got at least another 58 years, thank you very much. But there is a small chance that my kidneys might be on a slightly more abbreviated schedule.
To make a short story shorter, I had a routine physical on my 42nd birthday and the blood tests showed some unusually high serum creatinine levels, so that led to a visit to the nephrologist, which led to me driving around town for two days with a half gallon of urine riding shotgun in a picnic cooler, which led to a tentative diagnosis, which led to a biopsy to confirm said tentative diagnosis.
When they checked me into the hospital for the biopsy, the “reason” they put on my chart was “chronic renal insufficiency,” which sounds more like a personality flaw than a medical condition to me, but I guess that’s the general term they use when your kidney function falls below the 50% mark, no matter what the root cause.
Well, I got the biopsy results on Monday and they confirmed my nephrologist’s suspicions: IgA Nephropathy. It’s a condition where Immunoglobulin A (IgA) gets deposited in the microscopic filters (glomeruli) in the kidneys and slowly shuts them down.
Right now I’ve got a GFR (Glomerular Filtration Rate) of around 45, which means I’m down to about 45% kidney function. You don’t get into serious trouble until you get down to about 30%, so if that ever happens I’ll have to attend some “Renal Replacement Therapy” classes and have a fistula or shunt installed in my arm. Then, if I get down to 10-15%, I’ll have to start dialysis or have a kidney transplant.
So, how long before I get to that point? There’s absolutely no way of knowing. It could be next year, it could be 10 years from now, it could be never. It’s essentially a race to see who dies first, me or my kidneys. But there’s a good chance I’ll die of old age long before my kidneys give out.
Even though there’s no way of predicting exactly how (or if) things will progress, there are some prognostic indicators that might provide some clue. Here’s how they line up for me:
- Male. (Curse that blasted Y chromosome!)
- Late-age onset. (Although I object to the term “late-age.”)
- Decreased GFR at diagnosis.
- Moderate glomerulosclerosis.
- Elevated serum creatinine levels.
- No hypertension.
- Cholesterol within the normal range.
- Only moderate proteinuria.
- No glomerular crescents. (Or, as I like to call them, “glomerular croissants.”)
So, it’s kind of an even split. But there are a few other factors that need to be taken into consideration:
- Other than my “chronic renal insufficiency,” I’m in excellent health.
- I come from hardy Wyoming stock, so I’m genetically predisposed to living well into my 90s.
- Diseases with cool, mixed-case acronyms (IgAN) have been clinically proven to be less serious than those with regular acronyms (MI, DVT, TB, PMS, etc).
- If he comes before I reach the age of 100, I will require the Grim Reaper to say “Immunoglobulin A Nephropathy” ten times fast before I will consent to go with him. (I have yet to find someone outside the medical community who can say it properly even once.)
So, what now? Well, they’ve put me on an ACE inhibitor, but that’s about all that is required at this point. And now that they’ve established a baseline I’ll be getting blood tests every few months to monitor my kidney function.
But, as I said, as word has spread, some folks have presumed that things are much worse than they really are. I’ve already had about 20 kind souls offer me a pound of their flesh (or 5 oz., in this particular case), but everyone can keep their kidneys for the foreseeable future.
As Karen Bartholomew said when she heard about my “condition,” “I guess you just have to pee every day and hope for the best.” Which is exactly what I plan to do.