Former newspaper employee shares his story after kidney transplant

Former newspaper employee shares his story after kidney transplant

By Bob Russ

Posted Nov 19, 2011 @ 11:16 PM
Last update Nov 20, 2011 @ 11:07 AM

It was just about three years ago that I bid farewell to Repository readers. My final column for this paper detailed how medical problems had forced me to go on disability.

I was born with polycystic kidney disease (PKD), which causes cysts to grow and replace the tissue of the organ, eventually causing it to stop functioning altogether. My health declined gradually as I grew older, but it was in the last 15 years that the deterioration began to accelerate.

And then seven years ago, my disease finally caught up to me. My kidneys were close to complete failure. I was dragged, figuratively kicking and screaming, off to dialysis. The procedure was intense: Three times a week, two huge needles — each about the diameter of a ballpoint pen refill — were inserted into my vein, one to remove my blood and the other to return it after it had been treated. For three-plus hours I’d sit motionless in a chair as the dialysis units beeped and gurgled constantly; then I’d sit for another half-hour or so until the insertion sites stopped bleeding.

Yet I soon came to realize that dialysis wasn’t something to dread, it was something to appreciate. Without it, I would have been buried in the ground. No more visits with my daughter, Mary, no more phone calls from my sister or time to spend with friends. No more fishing trips or late night music-listening sessions, no more delicious foods or desserts, no sunrises or sunsets, never again to feel the wind on my face or the touch of another.

I realized that all these gifts (for that’s what they are, though we take them for granted) were mine in return for a mere 12 hours a week. I should have been dead, but I was still able to have a life — even if it was a struggle at times — and soon came to realize what truly is important, and what is not, in my life. My illness itself is a gift, because without it, I never would have really appreciated all the people who love me, and those who are precious to me. Without it, I would never really have appreciated my life.

But my life had changed drastically; I would head to work directly from dialysis, and each month I found myself growing more and more tired — a fatigue that wouldn’t go away.

Then came the day I had been dreading. My doctor told me that both of my kidneys had to come out. They had failed totally and were causing major problems as they had grown to gargantuan proportions: Two normal kidneys weigh about a pound and a half. My kidneys weighed an incredible 45 pounds at the time of their removal!

The surgery was brutal and painful, without a doubt the worst thing I’ve ever endured physically. But eventually I recovered and soon was back at work. Once again, my energy level began to dwindle gradually; soon it wasn’t so gradual. It took all I had just to get up the steps to the third floor where my desk was. Finally, in December 2008, I realized I no longer could muster the energy to work. My doctor had been urging me to go on disability for more than five years, but I didn’t want to hear it. Now it was shouting in my ears.

I adjusted to life at home after a while and tried to make the most of it. Occasionally, I would have the energy to do something, some writing, fish at a nearby pond or visit a friend, but ultimately those moments became quite rare. Several times I bought tickets to a baseball game or concert only to be too exhausted to go when the day arrived.

I’d hoped to get a transplant quickly, and several friends offered to donate a kidney, but none were a match or were unable to give for one reason or another. My only hope was a cadaver kidney, from someone who’d died but given up his or her organs so another could live.

One year stretched into another and I grew more and more ill. Then, in January, came the call I’d been waiting for: Come at once, we have a kidney for you.

I was actually on a gurney awaiting surgery, IV inserted, my anesthesiologist and surgeon only awaiting the arrival of the kidney from Indianapolis. But it was not to be. The surgeons in Indiana who’d removed the kidney cut the connecting vessels too short. Not only was the kidney of no use to me, it was no use to anyone and had to be discarded. What a waste.

But I chose to look at what happened not as a setback, but a step closer than I’d ever gotten, and believed I’d have a transplant soon.

I continued to speed downhill and come July I knew I was dying. If I didn’t get a transplant soon, I feared I would never see Christmas.

My skin was a grayish-green and I was down to a corpse-like 128 pounds on July 25 when the Cleveland Clinic called during a dialysis session. As soon as I finished with dialysis — the last time I would have the treatment — I gathered my things and headed to the clinic for a transplant.

I was hopeful, but given what had occurred previously, I was guarded in my optimism. But this time it happened! At 8 p.m. that Monday I underwent surgery. When I awoke the next morning, I was amazed at how well I felt. I had no pain whatsoever. By 11 a.m., I was off all pain medications and learned that my new kidney had started functioning almost immediately after the transplant — something that doesn’t happen that often.

To date, I have had absolutely no sign of rejection. The only problems I’ve had have been high potassium levels, fluid retention and major digestive woes — all of which seem to have worked themselves out. I’m regaining my strength and have put 30 pounds on my six-foot frame. The mental fog that accompanies dialysis has lifted.

In short, thanks to a 40-year-old woman whom I never met or knew, I have a new life.

My only problems today are financial. My medical costs are astronomical, especially the dozens of medications I must take. One of them alone — Valcyte, an anti-viral medication that I had to take for three months — cost a mind-boggling $1,365 for a two-week supply. And that was my 20 percent co-pay! I am not exaggerating a penny.

These days, I am writing freelance, doing some motivational speaking and looking for work. But I’m caught in a Catch 22: I can’t get off of disability until I make enough money to survive, and I can’t make more than $700 in a month without losing my disability. That’s the reality.

But I know that whatever the future holds, things will work themselves out. They always do, if you have hope and you have faith — and I have both.

And I know one more thing. Problems and all, life is good. And I thank God I have a life again.

You can reach Bob Russ at bobdotruss@yahoo.com

To learn more, visit: www.lifebanc.org or www.kidney.org
Also, TRIO (Transplant Recipients International Organization), a local support group for candidates and recipients of transplants, their family and friends) meets from 6:30 to 8:30 p.m. the third Tuesday of every month at the North Canton Medical Foundation’s education building, 6046 Whipple Ave. NW

http://www.cantonrep.com/newsnow/x505720387/Former-Repository-employee-shares-his-story