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.
Showing posts with label Anemia. Show all posts
Showing posts with label Anemia. Show all posts
Tuesday, October 13, 2009
Thursday, October 1, 2009
ICU and Beyond
And so, early the next morning, we called the doctor. Surprise, surprise! Off to the ER.
Predictably, I wasn't in favor. I felt weak, but not dizzy. I don't remember, but I would be surprised if I didn't dress for work! But on we went. At the initial triage, my blood pressure was 84 over 64! Wa-a-ayyy low. I was checked into a room in the ER, dressed for hospital success, hooked up to IV's and the tests began. My nephrologist came in and I had to address the fact that I hadn't seen him in sixteen months. For some reason he treated me like a misbehavin' teenager and didn't show much sympathy. Evidently the reason I was dizzy and passing out was that I was very low on blood and especially red blood cells. I was about to receive a complicated lesson on the redness of blood.
The diagnosis was complicated, but let's back up a bit to lay some groundwork. Despite my resolve not to wear the walking boot, the year had not been without chronic pain in my left ankle and foot. Continuous swelling had kept the tendinitis from fully healing and pain had been more or less constant. I knew that some painkillers were deterimental to kidney function and that aspirin thinned blood, so I consumed aspirin. A lot of aspirin.
What I didn't know was that aspirin was acid and the acid can cause bleeding ulcers. Bleeding was confirmed by the black sticky stools I had been having for several days. The blood loss was aggravated by severe anemia caused by kidney failure. Kidneys have many functions. Everyone knows about the filtering of toxins, but few are aware that the kidney monitors hemoglobin levels in the blood. When more red blood cells are needed, the kidneys produce a protein called erythropoietin which causes bone marrow to produce more red blood cells. Biotech companies now produce these proteins for use in treating anemia. Athletes requiring extreme stamina (cyclists, long distance runners) like to use 'EPO' to produce abnormally high numbers of red blood cells to supply extra oxygen to their muscles, aka 'blood doping.'
So, kidney failure means no 'epo' which means no red blood cells which means anemia! Internal bleeding plus severe anemia means no red blood. I was bleeding to death. I had passed out in our living room from lack of red blood cells.
And so the transfusions began. In the afternoon I was taken to the endoscopy lab for more fun and games. Here they ran a tube down the esophagus, took pictures of the ulcer and cauterized it. Hopefully that would stop the bleeding. Eventually that night I was moved into the ICU where they could closely monitor my condition during the transfusions. Initially I received 6 units of blood. The good news was that it stabilized. The bleeding had stopped and I was moved to a regular room. By now I had IV's for ulcer medication, pain medication, blood thinner, blood transfusions and who knows what else. I had three or four IV's in my right arm and one or two in my left. It's not good when a nurse is surprised by the number of IV's.
The next couple of days were just observation and I began to make plans for going home. But I was continually denied by the doctors. More transfusions were being discussed, which came as a surprise as my hemoglobin level was running stable at around 8 units. I asked a nurse what was normal and she said 12 to 14. I knew I had received 6 units, so I did the math and reviewed it with the nurse. "I was THAT low?" I asked. "Yes, you're a lucky man," she replied. I was beginning to see how close a call I had had with death.
As the days were on, my thoughts ran on two paths. The first was coming to grips with reality, not easy after years of stubborn stupidity. The kidney was failing. The rest of my life was going to depend on either dialysis or transplant. I could not conceive of how we could handle what would no doubt be staggering costs. I couldn't conceieve of how we could pay for this hospital stay! The other thoughts were the units of blood. They would have all come from different individuals who had given blood for whatever reasons. At this point I had received blood from 6 different individuals. I was beginning to understand what is meant by "the kindness of strangers." The notion of receiving these gifts was humbling.
Predictably, I wasn't in favor. I felt weak, but not dizzy. I don't remember, but I would be surprised if I didn't dress for work! But on we went. At the initial triage, my blood pressure was 84 over 64! Wa-a-ayyy low. I was checked into a room in the ER, dressed for hospital success, hooked up to IV's and the tests began. My nephrologist came in and I had to address the fact that I hadn't seen him in sixteen months. For some reason he treated me like a misbehavin' teenager and didn't show much sympathy. Evidently the reason I was dizzy and passing out was that I was very low on blood and especially red blood cells. I was about to receive a complicated lesson on the redness of blood.
The diagnosis was complicated, but let's back up a bit to lay some groundwork. Despite my resolve not to wear the walking boot, the year had not been without chronic pain in my left ankle and foot. Continuous swelling had kept the tendinitis from fully healing and pain had been more or less constant. I knew that some painkillers were deterimental to kidney function and that aspirin thinned blood, so I consumed aspirin. A lot of aspirin.
What I didn't know was that aspirin was acid and the acid can cause bleeding ulcers. Bleeding was confirmed by the black sticky stools I had been having for several days. The blood loss was aggravated by severe anemia caused by kidney failure. Kidneys have many functions. Everyone knows about the filtering of toxins, but few are aware that the kidney monitors hemoglobin levels in the blood. When more red blood cells are needed, the kidneys produce a protein called erythropoietin which causes bone marrow to produce more red blood cells. Biotech companies now produce these proteins for use in treating anemia. Athletes requiring extreme stamina (cyclists, long distance runners) like to use 'EPO' to produce abnormally high numbers of red blood cells to supply extra oxygen to their muscles, aka 'blood doping.'
So, kidney failure means no 'epo' which means no red blood cells which means anemia! Internal bleeding plus severe anemia means no red blood. I was bleeding to death. I had passed out in our living room from lack of red blood cells.
And so the transfusions began. In the afternoon I was taken to the endoscopy lab for more fun and games. Here they ran a tube down the esophagus, took pictures of the ulcer and cauterized it. Hopefully that would stop the bleeding. Eventually that night I was moved into the ICU where they could closely monitor my condition during the transfusions. Initially I received 6 units of blood. The good news was that it stabilized. The bleeding had stopped and I was moved to a regular room. By now I had IV's for ulcer medication, pain medication, blood thinner, blood transfusions and who knows what else. I had three or four IV's in my right arm and one or two in my left. It's not good when a nurse is surprised by the number of IV's.
The next couple of days were just observation and I began to make plans for going home. But I was continually denied by the doctors. More transfusions were being discussed, which came as a surprise as my hemoglobin level was running stable at around 8 units. I asked a nurse what was normal and she said 12 to 14. I knew I had received 6 units, so I did the math and reviewed it with the nurse. "I was THAT low?" I asked. "Yes, you're a lucky man," she replied. I was beginning to see how close a call I had had with death.
As the days were on, my thoughts ran on two paths. The first was coming to grips with reality, not easy after years of stubborn stupidity. The kidney was failing. The rest of my life was going to depend on either dialysis or transplant. I could not conceive of how we could handle what would no doubt be staggering costs. I couldn't conceieve of how we could pay for this hospital stay! The other thoughts were the units of blood. They would have all come from different individuals who had given blood for whatever reasons. At this point I had received blood from 6 different individuals. I was beginning to understand what is meant by "the kindness of strangers." The notion of receiving these gifts was humbling.
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