Stayin’ alive

A kidney dialysis/transplant diary

A little background

A commenter yesterday said she’d like more information on what led up to my kidney failure.

It was Type II Diabetes, not unlike most kidney failure patients. The research I’ve done says nationwide 45% of kidney failure is directly attributable to Type II Diabetes and here in Iowa, according to Cedar Rapids nephrologist Fadi Yacoub, that’s more like 50-60%. Because Iowa has such a large aging population the incidence of Type II is higher and therefore the incidence of chronic kidney disease and kidney failure are higher, too.

I was diagnosed with Type II diabetes midyear in 1998. It was no surprise to me because I had been telling doctors that I thought I had diabetes for several years. Why it took so long for one of the them to test for diabetes, I have no idea other than they were not my primary physician and the attitude must have been, “it ain’t my job.”

I had been having problems with recurring yeast infections — ding — and my gynecologist called for a blood sugar test then told me the result was so high no further testing was necessary. I had diabetes.

At the time, I had no health insurance and, of course, no primary physician. Not a good thing, but it happens to too many these days. I had just started working at the newspaper and lucky for me there was no “pre-existing condition” in the insurance coverage to contend with since I’d never been diagnosed with diabetes before.

When I think back, I think my first symptoms of diabetes had occurred in 1990. I had been stripping wallpaper — standing on a ladder — and the spots on my shin where they rubbed against the ladder took forever to heal. I also was having problems with recurring yeast infections then, too.

That story was not atypical then nor is it today. Estimates indicate there are 54 million people in the US who are pre-diabetic and of the 20.8 million with diabetes, 6.2 million don’t know they have it.

So, by the time I had an official diagnosis, diabetes had already begun its corrosive work on my system. Proof of that? Within three months of the diagnosis, I had a mild heart attack and 2 stents — I call them my internal reinforcing rods — were placed in my heart.

I dropped weight mainly because of the fear factor a heart attack causes, but it crept back and more with it, my typical pattern with weight loss.  I consider myself an expert at dieting because I’ve done it most of my life.  I think in total I’ve probably lost the equivalent of at least 11/2 normal-sized adults over my lifetime of dieting. What I can’t seem to accomplish is keeping the weight off.

And even though I was overweight, I had taught myself new eating patterns.  Things that are good for you: whole grain foods and breads; drinking lots of water; cutting sugar out of food; lots of salads and vegetables.

I’ve also had a problem with fluid retention for most of my adult life, heightened by a career that often meant working many hours past 8 and most of those hours parked squarely in front of a typewriter or computer screen.  Not the best thing to lessen leg and ankle swelling.

Oh, yeah, and the stress level in a newsroom is always nearly palpable, also not good for your health.

By the time 2006 rolled around, I had a number of complications directly attributable to Type II Diabetes: heart problems and congestive heart failure (astounding water retention there, too, which causes stress on the heart); hypertension; dental problems; Lichen Planus and Lichen Planus oral; vision problems including macular edema; brawny edema; slowness to heal.

My “primary care physician” and his office became one of my regular visits. I have great respect for Dr. J as both a knowledgeable physician and one of the most caring doctors and people I’ve ever met.  He had — always — my best interests at heart and is so sincere that at first I wondered, “is he for real?”  But he is.

I also have some medical problems I don’t think are connected to diabetes though who knows for certain.  I have arthritis, sinus problems, sleep apnea, restless leg syndrome, a history of migrane headaches and some thyroid issues.

Lord, maybe I should go lie down …

I felt lousy. I felt worse than lousy. I was so concerned that I started – gently – to “prepare” my son with the idea that Mom wasn’t going to be around forever and forever might come sooner than he believed.

I was drowning in my own fluids. My weight gains were incredible and I remember telling my GP, “if I were sitting where you are listening to me, I wouldn’t believe it when I said, ‘Dr. J, I’m simply not eating enough to be gaining weight this way.'”

I thought it was congestive heart failure again.  I’d had a bout a couple of years earlier that sent me to the hospital where they drained over 50 pounds of fluid off my body in about 10 days time.  Sounds incredible, I know, but true.

Dr. J prescribed higher doses of lasix and added a “turbo charger” of metolazone (Zaroxolyn). It helped, some.  Over the next few months we monitored my weight and my creatinine. He sent me to my cardiologist for more testing and a new nuclear stress test. I hate those, but I knew it was necessary.

I still felt lousier than lousy. My creatinine levels were leaping, not creeping. In six months, they’d gone from a high normal of 1+ to at the edge of 6.

Finally, in January, he admitted me to the hospital for extensive testing. He called in a nephrologist who said my kidneys were functioning at less than 15% of normal.  I was knocking on the door of End Stage Renal Disease.

In about three weeks, the door opened wide to ESRD and closed firmly on anything near “normal” life.

What were the symptoms leading up to it? Really, other than the water retention, there seemed to be little or none other than a general fatigue and feeling lousy,  sort of close to collapse all the time.

Of course, between diabetes and all the complications I already suffered, it was nearly impossible for me to compare how I felt to “normal.” It had been so long since I felt normal I could no longer relate to what that was.

I still can’t. I feel 75% better — at least — than I did last year at this time. But I know I don’t feel normal.


October 30, 2007 - Posted by | dialysis, health, kidney, transplant

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