Transplant: Twelve Years Out

I remember Halloween twelve years ago. It was three days post-transplant. I was lying in my bed at All Saints Hospital in Fort Worth and my transplant surgeon with his attendant nurses came traipsing through my room dressed as 101 Dalmatians. Yes. In full spotted dog costumes with tails wagging, ears flopping and stethoscopes flying.

Now it seems so long ago. Transplant followed two years of dialysis which followed twelve years of declining health as Polycystic Kidney Disease slowly ravaged my kidneys.

Through those twelve years of kidney failure I was not truly aware of how sick I was. I knew I felt bad but my condition was masked by denial and the grind of everyday life. It was indeed the proverbial 'slippery slope.'

Not until I was cleansed of toxins and excess fluids by dialysis did I begin to have some glimmer of how sick I had been. And then transplant released me from the purgatory of dialysis.

Now, twelve years later, as we head into an uncertain future, I have so much for which to be thankful.

My left arm carries the scarred reminder of my dialysis lifeline. It never lets me forget.

Transplant Convergence Continues

The January 2010 transplant continues as three people I have 'met' since beginning to blog on PKD are receiving living donor transplants this month. 

Sean Hoefling (Living with PKD) had his transplant early in January and is doing great and already going back to work. He's had some issues with Potassium levels but that seems to be working out. Diet is way less restrictive than with dialysis, but it is still very important. The thinking is, if it is difficult for the kidney to process or maintain proper levels, then help the kidney out by watching what you eat.

His brother Bruce (pkd sucks) is not having such an easy go. There were unusual complications with blood flow to the kidney which required a second surgery, a longer stay in ICU and now 'sleepy kidney syndrome'. He is producing urine, but they are waiting for the creatinine to start going down. Bruce just doesn't seem to go down the easiest path! Everything, from PKD to dialysis and now to transplant has been extremely difficult. As difficult as my path seemed, I almost feel guilty about how easy it was compared to what Bruce, Amy and their family has been through.

Neal Branson ("...in sickness and in health...") and Candy (his donor and co-worker) are in surgery this morning. A local news outlet did a great story which you can see here (Deputy's Kidney Fight). The surguries should be starting soon. 

These are all miracles of people donating living parts of their flesh, blood and bodies to give another the gift of life. Please keep them all in your prayers. 

Receiving the Call

So, there I stood, October 27, 2008. At 3 am. In the middle of the bedroom with a telephone to my ear, shaking Susan violently to wake her up, trying to hear and understand what Bettina was saying, and now trying to tell Susan what was going on and talk to Bettina. All at the same time. It was quite confusing. And exciting.

So the gist was this. She was making the offer of a kidney, BUT it was considered a high-risk kidney. She would give us a few minutes to make a decision.

WHAT??? Is this a reality show???

The risk involved the life history of the donor. He had gone through a period of IV drug use, but the family said he had been sober for the last four years. During that time he had married and had a young son. The blood was clean and there was no evidence of HIV, hepatitis or any other blood born pathogens. We were not the first to be offered the kidney. Bettina did tell me that I was an excellent match and that she would call back in a few minutes.

Now, Susan and I had a quick, life-or-death conversation, putting quite a strain on our not-yet-awake brains. Our initial instinct was to take the kidney. We were not biased by the history of drug use, but my concern was the reliability of testing for blood born pathogens. So, off to the internet!

Initial Google searches produced a lot of generalized numbers and professional sites where you  pay for access to hard data, but real numbers meaningful to real folk like us were hard to find. So we turned to the ultimate source of reliable data for the masses, Wikipedia. Here were numbers, lots of numbers, all footnoted to various medical journals, and easy to read. Best of all, the numbers showed that medical science seems to have blood testing down, well, to a science. At least as far as HIV, hepatitis and worrisome pathogens were concerned. Performance enhancing cocktails for athletes is another story.

We looked at one another and hugged. Our decision was made. But I cautioned Susan that the deal was not closed. There would be many more blood checks and matching tests before transplantation could occur. Several possible matches are brought in for every organ and the kidney goes to the best match. During the course of dialysis I had seen a number of patients be called in for a transplant only to come back to dialysis after the kidney went to a someone else.

It seemed like hours before Bettina called back. It was difficult to keep emotions in check as I told her we would accept. She seemed to be as excited as we were.

Time for logistics. I was scheduled to be at dialysis at 5 am, which was great timing as my blood would be cleaned prior to surgery which they hoped would happen late that afternoon. But first I had to go to Baylor Dallas for blood draws. Then I would go to dialysis and then we would drive straight to Baylor All Saints in Fort Worth late in the morning.

Time for a little technical transplant talk. UNOS (the national organ-sharing bank, check them out) divides the nation into regions around transplant centers. When organs become available they look first at that region. If a suitable match is not found, the search area expands. Each center and region has a list and patients can be listed on more than one list. The catch is that you have to be able to get to the transplant center quickly and remain in that area for 6-8 weeks after transplant for monitoring. Dallas and Fort Worth are centers of two different regions and Baylor Transplant Services administers programs in both cities. It was easy for me to be on both lists.

Now it was a mad dash to throw on some clothes and head to the hospital, which is about 10 minutes from the house. Once there it took 20 minutes to find the right lab. We finally found life in maternity where a kind nurse took us right down the hall to the lab. They quickly drew many vials of blood and we headed to dialysis. I had called and told them why I was going to be late. After many hugs I was rushed into the center and hooked onto my machine for the last time.

Back to the Story

When we last saw the patient, he had been discharged from the hospital. Cauterization had stabilized bleeding from a duodenal ulcer. Transfusion of 8 pints of blood had restored hemoglobin to a stable and survivable level. The ureter stent had been replaced to allow urine to flow from the remaining kidney to the bladder without impedence from the grotesquely enlarged and deformed polycystic kidney. Feet and ankles were swollen and painful to the point where a walker was required for standing and walking. The kidney was functioning, but barely. The diagnosis had progressed from chronic kidney failure to End Stage Renal Disease. Stage 5 out of 5.

The leg and ankle swelling which was so painful on release from the hospital improved to a livable level. I could walk without pain, but ankle swelling and leg cramps persisted. Fatigue was constant. Every day was a struggle. The next 8 months would see the gradual deterioration of remaining kidney function. While there was no treatment for the PKD which was crushing the kidney, pursuit of several therapeutic avenues could help prolong kidney function.

High blood pressure was most critical as high blood pressure destroys the tiny capillaries where the kidney performs filtration of blood. Capillary damage is the direct cause of kidney failure. The damage is similar to capillary damage done in the brain when high blood pressure causes hemorrhagic strokes. I was taking 4 different drugs plus diuretics to control the blood pressure. Both the drug cocktail and dosages continued to change and increase as the kidney continued to fail.

Fatigue and cramps were symptoms of anemia. I was taking iron supplements, but was not producing red blood cells. The first step of the therapy was to convince my insurance to cover a series of injections of Epoetin (Procrit and Epogen are the brand names) which simulates the protein produced by kidneys that tells bone marrow to produce red blood cells. The drug is expensive, but the injections were eventually approved. However, the anemia continued to persist. Normally the production of blood cells is a gradual process, but now it was occurring in massive spurts. The periodic injections were depleting iron reserves faster than iron supplements could be absorbed. Eventually (again!) my insurance approved IV iron infusion which improved the anemia.

In addition, my regimen of drugs included Calcium, Potassium, and Vitamin D, as well as medication for ulcers and high chlorestorol. There may have been more, I really can't remember. The kidney performs many complex functions other than removing toxins and excess fluid from the blood. It monitors and regulates numerous minerals and vitamins and levels of several different hormones and proteins.


I did feel better after several weeks of Procrit and Iron therapy and proclaimed myself 'Ironman' when I walked into the store after an iron infusion. But maintaining a courageous front through sheer bluster could not mask the medical reality. Even at this point I was determined to avoid dialysis through sheer will and stubbornness.

On advice of my nephrologist we began the application for transplant, although it was too late to realistically hope that I could have a transplant before I would need dialysis. There was hope as allocation of kidneys is a little different than other organs. The difference is the existence of dialysis, which allows someone to live with total kidney failure. This option does not exist with hearts, lungs, or livers. Those organs go to the most critical. Kidneys go to the best matches. Usually kidney failure is a secondary effect of another disease such as diabetes which has other dibilitating effects on the body. Since PKD affects only the kidney, PKD patients have a better longevity with a successful graft.


However I was initially turned down as a candidate for transplant. I was too heavy and needed to loose weight to be considered. It was September, 2006 and the future was dark.