I Can’t Complain

32 years ago, I was diagnosed with Chronic Kidney Disease, also called CKD (specifically, I had Membraneous Glomerulonephritis (chronic)). I was living near Allentown, PA, at the time, and my doctor, Dr. Paul Bosonac, was awesome. He spent a lot of time explaining what was wrong with me (basically, he explained it as “holey nephrons”), but he was a bit stumped because he wasn’t quite sure what to do with a 22-year-old who, as he said, “had 80-year-old kidneys”.

After doing a kidney biopsy, he decided that I should go on Prednisone. Massive doses. 120 mg every other day, for 6 months. But he admitted to me that he didn’t know what would happen…his best guesses were that in six months, I’d need a transplant, or I’d be on dialysis, or I’d be dead.

I (obviously) beat those odds! By Christmas, my kidneys had started to respond, and he weaned me off the drugs (this took another nine months). There were no guarantees as to what the future would hold. (Then again, no one gets any guarantees, so I wasn’t too fussed about it.)

It was 13 years (and several more nephrologists because I kept moving to different states) before my next incident. Thus started the many cycles of Prednisone over the next five years. Each time, my kidney function would increase, although my “high” value kept dropping overall. During one of the “good” times, I got pregnant (at 40!), and everyone was surprised when my kidneys handled it just fine. (My OB/GYN said that I had “the most boring pregnancy ever”, which no one expected. Dual high-risk moms-to-be don’t typically have boring pregnancies!)

Over the last 14 years, I’ve changed nephrologists twice and endured a variety of drugs. I’ve been on Prednisone, by itself and in combination with oral chemotherapy. (A side effect of chemotherapy is increased kidney function. This can be a problem for people with cancer, but it’s a bonus for people with CKD.) I had 2 Rituxan treatments, spending each day at Mass General Hospital (MGH) as poison dripped through the IV, while gloved, masked, and suited nurses upped the dosage on a regular basis. (That’s the standard protocol.)

For those who are curious, my eGFR (way to measure kidney function) is 19; my BUN is 35; my creatinine is 2.6. This puts me solidly toward the end of Stage 4. (Typically, people my age should have eGFR at 60-100, BUN at 5-21, and creatinine at .4-1.0.) At Stage 5, also known as End Stage Renal Disease (ESRD), eGFR is somewhere around 15, and when eGFR is at 10, they start talking transplant. Because I’ve been under my doctor’s care for so long, she’s able to determine when the best time is for me to proceed to the next step in the treatment plan. (In other words, it’s a little different if you just suddenly show up with an eGFR of 19.)

Two facts are in play here:

  • The type of dialysis determines how quickly your kidneys will completely fail. Hemodialysis, which is the one most people think of (where the blood is filtered outside the body, typically through a fistula in your forearm), is much harder on the kidneys. And it requires three treatments a week, lasting from four to five hours each (not including travel time). Peritoneal dialysis (PD), which uses a catheter in the belly (the dialysate flows in, and then it flows out), is much easier on the kidneys. However, it requires four treatments a day, although each treatment only takes about 40 minutes and can be done at home. It’s also easier to travel because PD can be done anywhere.
  • If you start peritoneal dialysis before Stage 5 starts (like with an eGFR of 19), it should be longer until a transplant is necessary. Because PD is easier on the kidneys, current function should be maintained longer.

After 32 years, my six months is up. Some time this year, I’ll be starting PD. I’ll be sharing the steps…from the surgery to insert the catheter to my travels to MGH for the training to setting up the home dialysis center (well, I suppose “room” is more appropriate). I don’t know yet when everything will happen because a lot of things have to be taken care of first (including preparing to go on Medicare, which…at this time…still covers all costs related to ESRD). I will, of course, continue to work and travel.

If you have any questions, let me know. If I don’t know the answer, I will find places that do. But my life is completely different from most people with CKD and ESRD. My quality of life hasn’t really been affected, other than my diet. Some people have it much, much worse, and I consider myself exceptionally lucky.

2 Comments

  1. This article was originally posted at my Posterous blog. My husband set up my own (name) site, so I’ll be using this site going forward.

  2. Char, my disease was PKD, but I had a living donor transplant about 6 months ago. We have a mutual friend (Dana W) who told me about you. She’ll send my email address to you so we can get into the details offline.

    In the meantime, see:
    https://spaces.usu.edu/display/~A00017343/I+Need+a+Kidney http://tinyurl.com/bicyclists-share-kidneys
    http://tinyurl.com/bicyclists-share-kidneys-v2-0

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