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.
Tuesday, October 13, 2009
Monday, October 12, 2009
A New Week
Last week was just a rush! Thanks for everyone's support and encouragement. One last interview is scheduled to take place. Michael will be on Countdown with Keith Olbermann on MSNBC at some point. The interview has been postponed twice because Keith is taking care of his father who has been suffering Acute Kidney Failure among other issues. Because of the bond of kidney disease he wants to conduct the interview personally. At this point, scheduling is day-to-day. I will post when the schedule is definite.
Mr. Olbermann did a moving piece on the need for health reform last week where he discussed his father's trouble. Here's a link:
Keith Olbermann on Health Care Reform
Tomorrow I plan to return to the story of my struggle with PKD.
Mr. Olbermann did a moving piece on the need for health reform last week where he discussed his father's trouble. Here's a link:
Keith Olbermann on Health Care Reform
Tomorrow I plan to return to the story of my struggle with PKD.
Wednesday, October 7, 2009
An Exhausting Day
It's been a long day. Up at 4:30 to shower and iron a shirt. Barely got coffee into a cup before the driver was here to take me downtown for the CNN remote. Home again, catch up on emails and Facebook, update the blog, and off to work.
Then the phone calls start. The first one is a request for an interview from Keith Olbermann (MSNBC) who's doing an hour long special on health care Thursday night. A round of phone calls and emails to family members ensues. Then a call from KABC Talk Radio in Los Angeles. They want a morning drive time interview. Another round of communiques.
Then the phone calls start. The first one is a request for an interview from Keith Olbermann (MSNBC) who's doing an hour long special on health care Thursday night. A round of phone calls and emails to family members ensues. Then a call from KABC Talk Radio in Los Angeles. They want a morning drive time interview. Another round of communiques.
Susan watched some talk shows tonight to take a reading. Evidently we paddled at just the right time and have caught a huge wave approaching its peak. It feels awkward to be at the center of attention when so many are so much more devastated. There many families caught in the health care pinch much worse than we are. We (I) have been taken care of to this point. We got into this whole thing when Susan responded to a Kristof column about a couple devastated beyond belief. There are many responses to Kristof's column about us that were written by individuals in far more tragic circumstances. But here we are and it is our time to carry the torch. The most uncomfortable aspect is being the pawn of so much flamboyant rhetoric.
I do want to make one thing clear. When we agreed to talk with Nicholas Kristof, we did not anticipate being a focal point for national debate. The issue is a moral one and one that should be discussed and resolved with a minimum of grandstanding hyperbolic rhetoric. I hear a lot of talk and opinions thrown around without regard for the subtler issues of the nature of diseases and how they affect the lives of individuals, and what medicine can do to enrich our human community, if indeed human community remains.
While our family faced a crisis when it came to investigating the potential of Michael or Travis as a possible donor for myself, in the end insurance provided two successful years of dialysis and (so far) a very successful transplant. Without dialysis or transplant my life would have ended almost three years ago.
The substance of the current healthcare debate is how Travis and Michael will be taken care of in the future.
Tuesday, October 6, 2009
A Bigger Forum
We wondered what, if any, reaction there might be to Nicholas Kristof's NY Times column on Sunday. The response was a little overwhelming. When I walked into the choir room for rehearsal on Sunday, it was being discussed. A friend heard about from a friend who saw it in Copenhagen. Friends of a friend read about it in New York. And of course it spread rapidly and virally on Facebook.
I could not resist reading the comments on Mr. Kristof's blog. Most of his audience approved and thanked him for sharing our story. A few called us "stupid," "ignorant," "negligent" among other things, but that's to be expected. Most were ignorant of the effects of PKD or the realities of dialysis and transplant. The moving fact is that 12% (33 out of 277) of those commenting had issues relating to the relationship of diagnosis (preexisting conditions) to insurability. The 33 broke down as follows:
All of this feedback was very reassuring. I felt very exposed as we went out on this limb with Mr. Kristof. We were sure of ourselves but we didn't really know how many others there were who shared our concerns. Evidently quite a few and the response was gratifying. The column was certainly noticed and seized upon by individuals active with groups such as the PKD Foundation, fighting to find treatments and a cure.
The big surprise came early Monday when CNN called. Evidently they wanted to interview Kristof on Monday, but he wanted to do it Tuesday with us. So yesterday was a day of massive communications, arranging logistics, and making arrangements. They arranged cars to pick us up and get us to the studios and to take Travis all the way to Stony Brook for his class. We did screening interviews. I prepped by taking Anthony, my drum prodigy nephew to see Jack White and his new band, The Dead Weather. Always best to go on national TV exhausted, slightly hungover and hearing impaired!
The interview went smoothly. The David Letterman story was OUR lead in story! (Dave and Dave, Back to Back.) Travis and I each got in a couple of sentences, but it was Kristof's show. We were just pawns in his game, but we knew that going in. Travis was on a real set in New York with Kristof. I was remote from a small room on the 15th floor of building in downtown Dallas on a stool in front of a Dallas morning backdrop with lights, a camera and sound plug in my ear. An observer would hear nothing, then I would speak, then silence, then I would speak again. End of drama. Out the door, down the elevator, into the waiting limo and back home.
But I think we made a splash! The PKD people seem to be thrilled with the exposure and want to put our story on their website. It was extremely courageous of Travis and Michael to put themselves on the line, especially Michael in light of his diagnosis.
I hope it proves to have been worth the risk and effort and that meaningful health care reform is accomplished.
I could not resist reading the comments on Mr. Kristof's blog. Most of his audience approved and thanked him for sharing our story. A few called us "stupid," "ignorant," "negligent" among other things, but that's to be expected. Most were ignorant of the effects of PKD or the realities of dialysis and transplant. The moving fact is that 12% (33 out of 277) of those commenting had issues relating to the relationship of diagnosis (preexisting conditions) to insurability. The 33 broke down as follows:
- 16 were related to PKD
- 5 were related to other kidney disorders
- 2 were related to disclosure of HIV
- 5 were related to other diseases
- 5 were related to other private insurance issues
All of this feedback was very reassuring. I felt very exposed as we went out on this limb with Mr. Kristof. We were sure of ourselves but we didn't really know how many others there were who shared our concerns. Evidently quite a few and the response was gratifying. The column was certainly noticed and seized upon by individuals active with groups such as the PKD Foundation, fighting to find treatments and a cure.
The big surprise came early Monday when CNN called. Evidently they wanted to interview Kristof on Monday, but he wanted to do it Tuesday with us. So yesterday was a day of massive communications, arranging logistics, and making arrangements. They arranged cars to pick us up and get us to the studios and to take Travis all the way to Stony Brook for his class. We did screening interviews. I prepped by taking Anthony, my drum prodigy nephew to see Jack White and his new band, The Dead Weather. Always best to go on national TV exhausted, slightly hungover and hearing impaired!
The interview went smoothly. The David Letterman story was OUR lead in story! (Dave and Dave, Back to Back.) Travis and I each got in a couple of sentences, but it was Kristof's show. We were just pawns in his game, but we knew that going in. Travis was on a real set in New York with Kristof. I was remote from a small room on the 15th floor of building in downtown Dallas on a stool in front of a Dallas morning backdrop with lights, a camera and sound plug in my ear. An observer would hear nothing, then I would speak, then silence, then I would speak again. End of drama. Out the door, down the elevator, into the waiting limo and back home.
But I think we made a splash! The PKD people seem to be thrilled with the exposure and want to put our story on their website. It was extremely courageous of Travis and Michael to put themselves on the line, especially Michael in light of his diagnosis.
I hope it proves to have been worth the risk and effort and that meaningful health care reform is accomplished.
Sunday, October 4, 2009
A Bigger Forum
A few weeks Susan posted a beautifully written comment on a column on health care reform in the New York Times by Nicholas Kristof about the dilemma my need for a new kidney placed on my sons who each have a 50/50 chance of being blessed with a diseased inheritance from their father. He was moved by Susan's words and asked if he could talk with us and possibly use our situation as a column. We agreed and after several weeks discussion among ourselves and with Mr. Kristof, the column was published today. It captures the poignancy of the boys dilemma and relates it to the current national debate.
Here's the link:
Nicholas Kristof: Dad's Life or Yours?
Here's the link:
Nicholas Kristof: Dad's Life or Yours?
Friday, October 2, 2009
Hitting the Bottom
So 2006 was off with a BANG!
From the selling floor to Champagne on New Year's Eve, to Chili and Black-eyed Peas on New Year's day, to passing out and nearly bleeding to death, through the ER to ICU and now confined to a hospital bed with a multitude of tubes going every which way. I guess it beat the alternative.
As I lay there in the dark of night unable to sleep with the night noises of the hospital echoing down the halls I had plenty of time to grapple with the reality of the future. The days of Stubborn Stupidity had run their course, thankfully just short of their logical end. I was alive thanks to the generosity of the many who had donated blood. My kidney was still working, barely. My future would at some point be dependent on either machines or a living organ from another person. The psychological adjustment was not easy. The path led through dark nights of depression and despair.
Depression and despair was aggravated by my intense desire to go home. Some doctors would soft pedal and say it was possible, but the final decision was my neprologist who for some strange reason, didn't trust me to follow up. It was a long weekend in the hospital capped off by the decision to administer another round of transfusions.
The next question became the ureter stent that was now almost 6 months past the time it should be been replaced. (Damn, stents are just temporary?) The surgery was scheduled for the middle of the week, which meant a couple of days in a hospital bed. At this point I had been on IV's for over a week. My feet and ankles were so swollen and sore that standing was extremely painful. Just hobbling to the bathroom was difficult. The old stent came out smoothly (evidently salt and mineral deposits from continued exposure to urine can make removal of an old stent a little difficult and damaging to the internal tubing.)
After almost two weeks in the hospital, I was finally discharged. I was taken to my parents' house so I could have continuous care. I had to use a walker.
I had finally hit the bottom.
From the selling floor to Champagne on New Year's Eve, to Chili and Black-eyed Peas on New Year's day, to passing out and nearly bleeding to death, through the ER to ICU and now confined to a hospital bed with a multitude of tubes going every which way. I guess it beat the alternative.
As I lay there in the dark of night unable to sleep with the night noises of the hospital echoing down the halls I had plenty of time to grapple with the reality of the future. The days of Stubborn Stupidity had run their course, thankfully just short of their logical end. I was alive thanks to the generosity of the many who had donated blood. My kidney was still working, barely. My future would at some point be dependent on either machines or a living organ from another person. The psychological adjustment was not easy. The path led through dark nights of depression and despair.
Depression and despair was aggravated by my intense desire to go home. Some doctors would soft pedal and say it was possible, but the final decision was my neprologist who for some strange reason, didn't trust me to follow up. It was a long weekend in the hospital capped off by the decision to administer another round of transfusions.
The next question became the ureter stent that was now almost 6 months past the time it should be been replaced. (Damn, stents are just temporary?) The surgery was scheduled for the middle of the week, which meant a couple of days in a hospital bed. At this point I had been on IV's for over a week. My feet and ankles were so swollen and sore that standing was extremely painful. Just hobbling to the bathroom was difficult. The old stent came out smoothly (evidently salt and mineral deposits from continued exposure to urine can make removal of an old stent a little difficult and damaging to the internal tubing.)
After almost two weeks in the hospital, I was finally discharged. I was taken to my parents' house so I could have continuous care. I had to use a walker.
I had finally hit the bottom.
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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