Been a Few Minutes...

It has been a few minutes since my last post. A Google search says that this blog is likely inactive and that's largely true.

But it might be time for it to come back to life. 

To recap, I am 17 years since transplant. Slowing down a bit going into my 75th year. Troubled by Atrial Fibrillation and occasional gout, but still in pretty good health. 

My return to the blog is motivated by a couple of things. 

First and foremost, I am beginning to receive counseling from my transplant team about the inevitable failure of my grafted kidney and transition back to dialysis. YIKES! That was a wakeup call. More about that later.

Secondly, I have become active on a couple of FACEBOOK groups and REDDIT threads on PKD and transplants and finding people looking to hear from and interact with other patients. That is a community I never experienced when I was going through kidney failure and transplant. It was the community I attempted to create and did create with this blog.

So, look for more to come.

THANKS for reading.

LIFE is Good. 

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.

Latest Update From the Lab and Would the Reader...

OOPS!


I had an email tonight from a reader who after a successful transplant has been diagnosed with BK Virus. I made the mistake of opening her message while pouring Pinot Noir to 125 customers at a wine tasting tonight and accidentally deleted the message. So, if you sent me and email and didn't hear back, I apologize so much, I know it's a difficult thing to do. 


Please resend. I know the importance of communication. As I have said before, I never communicated with anyone who had PKD or BK Virus until I began blogging. So far Surviving PKD has had 10,621 pageviews, over 30 google searches in the last few days on issues such as weight gain with PKD, fistulas for dialysis, and yes, BK Virus.


My story continues on a positive track. Visits to the Dallas Transplant Center's clinic are now quarterly. The most recent was 4/17/12. Lab results were good. Hemoglobin is normal, blood pressure is under control, weight gain has stabilized, and creatinine is stable at 3.1. Which is not great, but it was as high as 5.8 during the onslaught of the BK Virus. I feel great. There are daily reminders of how sick I was during the last days of PKD and End Stage Renal Disease.


So, thank you for reading. If the blog has helped please let me know. If you have questions, please let me know. If you sent me an email today, please resend.


THANKS,
Dave.

A Year Later

It's hard to believe that it's been a year since I posted.


Writing the blog came fast and furious in the year following the transplant. I was highly charged to relate my story. I wanted to spread the news of the miracle of transplant. I wanted to talk about my struggles with Polycystic Kidney Disease, End Stage Renal Disease and dialysis.


I had never been in contact with anyone who had had PKD Until I came home from my transplant and found an email from Amy about her husband Bruce's struggles with the same issues I had faced. Through my blog and the blogs of others we developed a small community in several states of people dealing with PKD and transplants.


Our blogs are now voices floating in cyberspace waiting to speak to those who search them out. And search them out they do. This blog has had more readers in the year of inactivity than in the years I was writing!


My posting did slow down after my story reached the transplant, but it picked back up after the BK Virus reared its head and I had another story to tell. And, after almost a year and treatment by reduced immuno-suppressants and Cidofovir infusions the BK count has been negative for over a year.


Now my health is good, well it's stable. The BK did its damage. Creatinine is steady but high 3.2% on the last lab, but better than it was a year ago. The Glofil test is slightly improved as well, but the kidney is still not functioning near 100%. Fluid retention is a problem and that's lead to weight gain, but energy and strength are good, better than they were in the 5-6 years before transplant.


Life is good. I am certainly in no position to complain. My natural organs failed over five years ago. It's a miracle to be alive!

PKD: Options. Anyone? Anyone?

I received an email yesterday from a woman with PKD. She was looking for a doctor who specializes in PKD. I didn't have an answer. Here is the exchange:

I was researching a doctor who specializes in PKD in Texas. I have not been able to find anyone and am hoping that you might have some information... I come from a family of PKD sufferers, my mother is 70 and had a transplant 18 years ago and just recently went back on dialysis, my sister died in 2006 three days after her kidneys were removed, my brother has it but is early in the stages and I myself have it. Only one child from our family was free of PKD and she donated her kidney to my mom. I have been going to the same doctor since 1993 however, I do not feel that her level of knowledge in PKD is as expansive as I would like. Since this is my life and I can only be in control of certain circumstances I want to be in charge of what I can. Do you have any suggestions on physicians that specialize in PKD? 

Ouch. Tough question. We all want to be "in control of certain circumstances," but that's tough with PKD. My reply:

I wish I had some information for you. I assume you've talked to the folks at the local chapter of the PKD Foundation.  You can reach them at northtexaschapter@pkdcure.org.

I was the first in my family to know of PKD...The doctors actively treated symptoms (mainly swelling and blood pressure, I never had major pain issues) and that was about it. Which suited me as I tend to be rather stoic and ignore symptoms. (Some would say I deny...) The result was that I never even knew anyone else with PKD until someone reached out to me through Facebook. Then I started to blog, just to provide a shared experience.

Throughout the whole experience I have been a patient of Dallas Nephrology Associates. I have had a good relationship with my doctors, though I wish there had been more that they could done.

So. That's my story. I would be interested to hear what you find, please stay in touch.

I confess, since my transplant, I have not thought as much about PKD. Susan went to the PKD Foundation's National Convention a couple of years ago when it was here in Dallas and their focus seems to be on research. You can check out some of the clinical trials here., look for studies which are recruiting,  check status. Here's one from NYU Med School that shows promise: drinking lots of water slows cyst development. For real! They finished recruiting volunteers almost two years ago, but but haven't posted the results. It sounds silly, but what are cysts but 'ugly bags of mostly water?' There are lots of trials and lots of research and it's encouraging.

But, what of treatment? I can't find much that's new. Same as it's always been. Treat the symptoms. Watch out for any sign of high blood pressure. Kidneys are pretty resilient, the cysts can squeeze them like a sponge, but high blood pressure is what does them in.

Jump to October, 2008

Please forgive this two year jump in the timeline. Obviously dialysis was successful and there are more bumps of learning and adjustment to cover in the story. But by October, 2008, I had totally adjusted to life on dialysis. I was feeling so much better and more alive than I had been in the preceding years of trying to ignore Stage V Renal Failure. The improvement was dramatic.

October has always been a momentous month in my life. Both in Atlanta and in Dallas, it is when the heat finally abates, the weather shifts and summer is really over for another year. Days are either cool, rainy and meditative or sunny and glorious, with blue skies and brisk northern winds. The first of the month sees my birthday and in Dallas we get the great State Fair of Texas.

It was after my birthday last year that I fully realized what had happened when I started dialysis. The time that had been allocated to my life by my incurable Polycystic Kidney Disease had been 56 years.  According to the doctors, it was doubtful I would have seen New Year's Day, 2007. Without the miracle of technology, Susan would have been a widow and my sons without a father.

 I began to have a glimmer of the blessings I had received.

Life Begins With a Needle

Monday, November 6 2006 was a clear fall morning, cool crisp air, pale blue skies with wispy clouds as Susan dropped me off at the hospital on her way to school. It was very casual, she might have been dropping me off at the store. It was my third hospital admission of the year. The first was through the ER, the second she dropped me off for day surgery to create my fistula. Today the fistula was going to be tapped for dialysis.

We have developed a ritual whenever I go into the hospital. She gave me a flat gold chain right before we were married. The only time I am without it is when I am hospitalized. She takes the chain from my neck and puts it around hers for safekeeping. And it keeps me with her.

Check in was smooth and I soon found myself in my room. The TV was terrible, but I had brought several books and occupied my time reading, napping. Doing tai-chi helped as well. Soon the nurse came in and shaved my arm and eventually took me to the dialysis lab. I had done some research and had a general understanding of what was going to happen and had enough knowledge to make me the dread the process.

However I was not prepared for the size of the needles, and they would start with small ones! Apparently my veins run deep in my arms. For years I had been flattered by nurses who were relieved to encounter 'an easy stick' when it came to drawing blood or installing an IV. But the fistula was small and deep. It only took a few sticks to hit the fistula... the first time.

And then, there I was: hooked up to a machine. It's a powerful moment. I was no longer an independent being. I was totally dependent on advanced modern technology to stay alive.

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.

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.

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.

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.

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:

• 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

Of the PKD related issues, most were families just like ours, parents with PKD reluctant to have their children tested; siblings with parents with PKD, frustrated by their inability to help.


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.

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.

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.

Instant Karma's Gonna Get You...and Did!

Famous last words, Dr. Karma. I think Mr. Lennon was closer to the truth, "Instant Karma's gonna get you... You better get yourself together, Pretty soon you're gonna be dead!"

I really gave my all to resisting the onslaught of PKD. I went to work every day, worked the floor, rolled stock, lifted cases of wine but I was continually exhausted. Some days it was difficult to walk from one end of the store to the other, but I pushed on. Many days it was a struggle just to drive home from the store. Looking back, I really don't understand my thinking. It was as if I just worked hard enough, the problem would just get tired of fighting me, that my stubborn drive would just break on through to the other side.


There were some good times. We met up with the boys in Santa Fe for a fun few days of vacation during the summer. In Los Alamos we visited the sites including The Black Hole, a salvage store in an old Safeway that sells surplus equipment from the labs. That's a lot of used exotic stuff! We met the legendary proprietor "Atomic Ed" Grothus. We went walking through the ruins at Bandolier National Monument. Progress was hindered because I had to sit down and rest every few hundred yards. During the trip my urine was tinged with blood. It was scary, but cleared up after a couple of days. I guessed it had something to do with the stent, but I kept it to myself and until today have never mentioned it to anyone. Talk about stubborn stupidity!


Back in Dallas, the year moved into fall and the holidays, the busiest time of year for any retail endeavor, but especially for wine and spirits. I was working long hard hours in the store and spending long hours at choir rehearsals and services as we neared Christmas. Certainly a season that makes huge demands on time and energy. Time I had, but energy was in short supply. But, yes, I hung in and worked my double shifts, got off work and still went to dinners and parties and somehow came through the holidays intact. 

Or so I thought.

I woke up unusually exhausted on my first day off in January, after the holidays. Exhausted and dizzy, I just collapsed into an easy chair in front of the television and napped on and off. Every now and then I would get to use the bathroom, do a load of laundry, get something to eat or drink, but the exhaustion and dizziness seemed to get worse and worse as the day went on. I remember bouncing off door frames, lurching from chair to chair for support until I could collapse in my chair. Any guesses as to whether any alarms were going off in my brain? Did I call anybody for help? Did I call a doctor? Did I even look up symptoms on the Internet? No, of course not.



Finally late in the afternoon, Instant Karma "knocked me right in the head" and I blacked out and collapsed on the living room floor. Somehow I established a link to consciousness and dragged myself up into my safe haven, the chair. "Susan would be home soon," I reasoned, "so I'll just sit here until she does." And that's what I did. When she got home I did a surprising thing, I told her about the dizziness and collapse. I was feeling more stable now. We decided to call the doctor first thing in the morning.

Another Crisis

Curiously, one of the problems I've faced piecing this memoir together is figuring out when things happened. I remember images and scenes from events but putting them on a time line is surprisingly difficult!

One clear memory is being in the hospital when the Texas Rangers were in the hunt for the playoffs (that's so rare it's easy to pin down!) and Frankie Francisco threw their fading chances along with a couple of folding chairs into the stands in Oakland. Michael was in town taking a semester off from school and we watched the games together in the hospital. So there you have it, the time was fall of 2004, several months after the ankle episode. I was still wearing the damned walking boot.

The pain began the same way as my kidney stones and the bleeding cyst, a stitch in the side that wouldn't go away. By Sunday afternoon, the pain was getting serious. I felt really bad and was vomiting. I felt the need to urinate, but could not produce any urine. Susan called the doctor who told us to go to the emergency room. What I remember most are the morphine injections and the warm blankets. I lay there, barely conscious wrapped in a dark, warm, velvet cocoon; the kind of pleasure that totally explains addiction to narcotics. They did x-rays and scans and there was talk of a possible kidney stone, which is what the pain felt like. But evidently kidney stones didn't explain the vomiting and the lab results which showed acute kidney failure.

I guess I need to back up a little. At this point I was in the early stage of chronic kidney failure. I don't remember discussion of numbers or stages, but even going back 6 years to the first nephrectomy, clearance numbers were out of the normal range and through the intervening years my kidney function had been in a very shallow rate of decline. The hospital visit showed a big spike in the level of toxins, which indicated acute kidney failure, not stones. Of course the kidney was enlarged and distorted by the cysts, small stones would be difficult to see.

Eventually I was moved out of emergency and into a room. Frankly I don't remember much. I remember being told I was going to have surgery and I have a brief memory of being in the operating room, but the morphine makes memories fuzzy. Evidently what had happened was that pressure from the size of the polycystic kidney had blocked the ureter so that urine could not pass from the kidney into the bladder. Urine backed up in the kidney, causing the kidney to fail, along with pain and vomiting. The solution was to insert a stent into the ureter to keep it open and allow the urine to flow. I will leave it to the reader's imagination as to the point of insertion (or not, as the reader wishes!) I found myself back in my room with a catheter hooked up to a bag of bloody urine. The stent worked, and after several days my kidney function improved to the level it had been before the crisis. 

My nephrologist told me it was time to start making preparations for dialysis. A vascular surgeon came to see me to make plans for the creation of a fistula in my arm. The fistula is created by connecting a large artery to a large vein to make a high-speed loop to carry the high volume of blood necessary for hemodialysis. It takes 6-8 months for a fistula to mature to a point where it can be used, so it's best to have it done before dialysis is actually necessary. Of course all of this news came as a total shock to me, as I had been totally denying the possibility of this eventuality for years. (See earlier post on Stubborn Stupidity.

I had other plans. I was scheduled to go on a company trip to visit wineries in Napa Valley (I wound up not going due to the surgery.) The holidays are the busiest time of year for wine sales and busy days with long hours were just ahead. There was certainly no time to schedule vascular surgery in November or December as the doctor suggested.  

We did go to Hell's Backbone in the Canyonlands of Utah for my sister's wedding. Travis flew to Las Vegas and spent the night sipping bourbon and grading papers in the bar at the Bellagio where we picked him up and and drove through Zion and Bryce Canyons and had an amazing weekend.

At the end of the holidays, after a long New Year's Eve in the store, I threw the walking boot into the trunk of the car and resolved never to wear the damned thing again, no matter how bad the pain. I was sick of being sick. I was sick of being hurt and disabled.

In February we went to New York and spent the weekend with the boys wandering through Christo's fabulous Gates in Central Park in the snow. After a long weekend walking the sidewalks of New York, through museums, up and down stairs in Subway stations, and through Central Park, I was walking and feeling better than I had in a year. 


And I never made a followup appointment with my nephrologist. I didn't see the vascular surgeon. In fact, I didn't see a doctor for the rest of the year. 

Mind over matter. You don't mind, it don't matter. An old friend, Dr. Karma told me that in about 1971.

The Long Slow Slide or Stubborn Stupidity Rules the Day

As I write, the good news is the improvement of Bruce Hoefling, whose crises caused by PKD have caused several hospitalizations due to burst and bleeding cysts, removal of both kidneys, a difficult time with dialysis and now many days in ICU due to undiagnosed seizures. Amy has been faithful in keeping her blog up to date. Link it up and keep them in your prayers.   

pkdsucks 9/22 It's Getting Better



To return to my story, after the left kidney was removed, life slowly returned to normal and my PKD, unlike Bruce Hoefling's, receded into the background. High blood pressure and occasional swelling of the ankles were the biggest medical issues. Of much more importance were unforeseen job changes which led me out of the packaging industry into first rock and roll memorabilia and then the wine business. (That was a nice change!) Our sons were finishing high school and heading to college and Susan and I were adjusting to the prospect of the empty nest. I was happy to stick my head in the sand and believe that my diseased kidney would somehow keep on doing its thing and life would just go on. Yeah, I know. Just me being stubbornly stupid again. (Why did I have to be so good at that???)

The next problem was aggravation of the swollen ankles. I somehow strained my Achilles tendon. I think it was at a wine tasting at a friend's house. I had a glass in my hand of a hard-to-find Pinot Noir when I unknowingly stepped down into his sunken living room. I stumbled, stayed upright and, most importantly, didn't spill a drop! The tendon started aching the next morning and the pain didn't go away. Selling wine retail is not a job you can do sitting down and I worked in a very large store. That didn't help the healing either. In fact as I tried to ignore the pain and kept working over the next couple of months, the pain just kept getting worse. 

It was the day after Father's day. My sons were in town and we were going with my dad on a barbecue excursion to Central Texas to celebrate when the pain finally became too intense. I bailed on the trip and asked Susan to call a doctor. Yep, tendonitis of the Achilles. I found myself on pain meds in an easy chair with my lower leg in a walking boot. The problem was, the ankle wouldn't heal. The swelling, due to progressive kidney failure, kept aggravating the damaged tendon. The other side effect of kidney failure is fatigue. I was continually exhausted dragging around a bum ankle in a walking boot.  

Was I seeing a nephrologist? NO.

Did I connect any of this to kidney failure? NO.

Did I acknowledge the possibility of dialysis or transplant? NO. 

Stubborn Stupidity was the rule of the day.

PKD has a Much Darker Side...

As I've been recollecting thoughts and timelines working on my next post, I've been reading the blogs of other victims of PKD. I've posted a few links and urge you to check them out. Particularly pkd sucks. The blog is written by Amy Hoefling. Her husband Bruce is currently sedated to prevent seizures in an ICU in Florida. He is on dialysis and I believe both native kidneys have been removed. They have two young sons each of whom may have PKD. My struggle with PKD has been nothing compared with theirs. I almost feel guilty writing about my own experiences. Please check it out and keep them in your prayers.

I was first contacted by Amy while I was in the hospital getting my transplant. The first time I logged onto Facebook after coming home, I found her message. She had seen that I had PKD and asked how I was dealing with it. At that time Bruce was approaching the need for dialysis but was very resistant to the notion, just as I had been. She wanted to know how I had approached it and overcome the resistance. The difference between Bruce's path and mine is unimaginable.

Receiving a transplant has proved to be deep well of emotions and the plight of the Hoefling family is tragic and inextricably linked to my own transplant experience. They have been looking for transplant donors, though the immediate concern is Bruce's current health. Please read her story and keep them in your prayers.

Remember that kidney transplantation can be done before dialysis is necessary. While both procedures are expensive, the cost of 6-8 months of dialysis is the same as the cost of a tranplant. ORGAN DONATION SAVES LIVES!

Trying to Hang on the Downslope

The next few years were characterized by determination just to go on with life as if everything was normal. But the blood pressure kept climbing higher and there was occasional discomfort sleeping on my side; seatbelts and airline seats put pressure on my enlarging kidneys. Stoicism, determination and deep currents of denial kept me going.

In the spring of 1997, Susan and the boys were off on spring break. I awoke one night with intense throbbing pain in my left flank. The only similar pain I had experienced were my kidney stones, so that was my self-diagnosis. Remembering the staggering cost of staying in a hospital for several days just to flush the stones by myself, I took a good slug of tylenol with several large glasses of water and went back to bed to just tough it out. Another bout of good thinking by the Dave-man!

The pain was somewhat better the next morning and I went on to work. My next action did show some intelligence and I called the doctor and made an appointment. An X-ray with dyes revealed some issues, and after a CT scan, I was referred to a urologist. The problem was what appeared to be a solid mass of indeterminate origin the size of a baseball on the left kidney. It could either be cancer or a blood filled cyst. (Sidenote for those who don't know: Polycystic Kidneys spontaneously develop many fluid-filled cysts. They continue to grow and squeeze the kidney like a hand squeezing a sponge. Just as a compressed sponge will not absorb water, the compressed kidney will not filter blood.) The pain was either from compression or bleeding into the cyst. He saw surgery to take a biopsy as the best option. Wow! I was not ready for this option. Cancers of the kidney are nasty. They rarely show up at an early stage becaues they are just not symptomatic! 

We went for a second opinion and the doctor's opinion was a good deal less than sugar-coated. Basically he said my kidney's were trashed and I was lucky to be alive or words to that effect. We left his office devasted. My urologist said things were not that bad, because despite how distorted the kidney's appeared they were still functioning a a fairly high level. He did say there was a possiblity that the kidney might not survive the surgery and he would have to remove it, but that the remaining kidney would continue to function well. And we agreed to the surgery.

Coming to Grips, Sorta...

Coming home from the trip I did something I had never done as an adult. Make an appointment for a physical. Other than the kidney stone, I only saw a doctor every other year or so when bronchitis set in after a bad cold. The physical yielded nothing unexpected. I had really high blood pressure and my cholesterol was beginning to creep up, but hey, I was in my mid-forties, that was normal. But the blood pressure was anything but normal. Despite changing medications, using a cocktail of medications and changing dosages, the blood pressure kept creeping up. We'd get it under control for a while and then bingo! Back up it would go.

Side effects were major issue. I felt bad afer taking the big med's with headaches, dizziness and weakness. Fatigue became constant with frequent naps after work. Occasionally I'd fall asleep in traffic and have a couple of dented bumpers to show for it. My ankles were contantly swelling and I started taking diuretics but they were limited in therapeutic value. 

Expense was another issue. At the beginning I paid for expenses upfront and was reimbursed by the company's insurance carrier after filing claim forms and receipts. Eventually the insurance changed to a PPO which was better. Now I just had to pay the copay's, which were still expensive since most were top tier brands.

We gave some thought to PKD during all of this, but I refused to consider the option that I would face kidney failure. The very words would just stop my thinking process. Of course, there is very little you can do. I started trying to improve my eating habits, mainly by avoiding salt and cutting way back on coffee and caffeine, trying to exercise more and keep tabs on the blood pressure. High blood pressure is the biggest destroyer of kidneys.


But that's the problem with PKD. When it starts causing problems, you can just treat the symptoms. And then hang on and see where it goes.

Life can be Normal

And the following years were good. Active family life centered around two great young boys. I was helping coach soccer, football and baseball teams. They both were singers so there were rehearsals and performances. Susan did graduate studies and became the first in the family to get an advanced degree. Vacations took us camping in the Rockies from the desert Southwest north to Canada. Rocky Mountain National Park became a second home. Taking the boys on an overnight hike over the Continental Divide was a spectacular highlight. It was mighty struggle getting up and over the 13,000+ mountains, but a triumphal march back into civilization. Our other destination was Manhattan where my parents had moved into a nice apartment on the Upper West Side, just across from Lincoln Center. The Big Apple became another home away from home. I did return from one vacaction to find an unexpected career change was at hand, but by the end of the summer I had a better job, so basically it just was a summer off! 

At this point PKD was an vague afterthought.  My health was great. Blood Pressure was normal. Well, I was a little overweight, but so what. And then in the mid 90's we decided to take a trip to New York. The church choir was to perform in a choral festival at Lincoln Center. Michael was a huge Civil War buff at the time so we decided to visit battlefields along the drive. The first night we drove through harrowing misty fog to stay close to Shiloh, The next morning, the visit to the battlefield was just what we had hoped it would be. As we drove on, I noticed an oily mist on the rear window. We weren't losing oil, but it was worrisome. I remember feeling nervous, antsy and edgy. It was not proving to be a relaxing trip.


Camping that night at the Cumberland Gap I stepped into a culvert and badly scraped my shin. The next morning, against my violent protests, Susan insisted we go to the emergency room in the nearest town. Leaving Susan and the boys asleep in the car, I went into the clinic where they were really not concerned with my shin, but were extremely concerned with my blood pressure which was 225/180. I had no idea of the severity of the situation. No doubt my anger was pushing it up even higher as they hooked me up to IV's and machines and worked to get things under control. Several hours later Susan came wandering in to see what's up. Thank goodness she had the sense to understand the nature of the emergency. Finally, the pressure came down enough that they would let us leave with prescriptions for medication and the understanding that we needed a cuff to monitor the blood pressure frequently and head for the nearest emergency room if the numbers got too high.

Though we didn't connect the dots at the time, PKD had struck its first blow.