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.