Transplant Convergence

Sean Hoefling, the first of three online friends scheduled for donor transplants received his transplant today! All went well, the donor is doing great and Sean is resting in ICU. Jeremy, his donor, came to Nashville prior to the surgeries and spent time with the Hoeflings over Christmas.

Sean's brother Bruce is scheduled for January 14 and Neil Branson is confirmed for January 26. We have been connected through blogs and Facebook for the last several months and I can't tell you how exciting it is to see receive treatment through transplant after their struggles with PKD.

I apologize for the lack of posts during the last few weeks. It's a demanding task keeping folks supplied with enough beverage to celebrate the holidays. Long days, no days off, and then I have to celebrate with my family in the precious time not spent on the job.

When life calms down, I'll begin to document the ups and downs of my experience with dialysis and the transplant application process.

Happy New Year to All!

Dialysis: Starting a New Routine

I had finally leaped the big hurdle and started dialysis. After years of denial, dread, and refusal to look at the inevitable future, the treatments had started and for the first time in years, I actually felt better. Even after just four treatments, my creatinine was lower than it had been ten years earlier, when I had my first PKD crisis and my left kidney had been removed.

(Creatinine)

My second week of dialysis started with the same schedule I would keep for the next two years. I was lucky to get on the first shift, so my scheduled treatment was at 6 am. My days were Monday, Wednesday and Friday. I am the director of the wine department of one the largest wine and liquor stores in the DFW area, so I was able to tailor my work schedule to my dialysis schedule. Wednesday's would be my day off, with a choir practice in the evening. I would go to work on Monday's and Friday's after dialysis (and some recovery time) work a closing shift. It was really quite a busy schedule! 45 hours of work, 15 hours at the dialysis center, and 4 hours of choir at church.

But I proceeded to keep the same strategy that I used to deal with kidney disease. If I would just ignore the pain and keep on keeping on, everything would work out in the end. And so far I guess it has!

Back to Work: Life Begins with Dialaysis

So on Thursday, November 9, 2006 I went back to work after three days of hospital supervised dialysis. I felt great, energy was good and the dark clouds of fear surrounding the great unknown had been dispersed. My left arm around the fistula was a mess, though. It was swollen, purple and had over 20 holes where the nurses had been unable to hit the mainline.

Friday was the day of my first appointment at the dialysis center. I expected to go in, dialyze for a few hours and then head in to work. As ususual, my expectations were ill informed and a little naive! A long meeting with the Director accompanied by reams of forms and releases was followed by a long exam by the center's nephrologist and then more meetings with the dietician and social worker.

Finally in the early afternoon I was shown into the lab. The patient technician's and shift nurses were super friendly and supportive and would become good friends over the next two years. The nephrologist had shown concern over my fistula and Fe, the queen of the needles was brought over to place the needles and, working slowly and carefully, she slipped them right in on the first try. My chair was next to a window and I basked in the warm late afternoon sun. I did have some cramping toward the end of the treatment, but got in the full four hours.

By the end of the treatment, I had been at the center 6 hours, had not had lunch and I was exhausted. I called the store and said, "See ya' tomorrow" and headed home.

Dialysis: The Third Day

The third and last day of hospital supervised dialysis began three years ago with a very sore and swollen left arm. My veins run deep and the fistula was not fully formed. My forearm resembled a pincushion from all the failed attempts to stick the needles into the fistula. (The needles were approximately the size of a four penny nail!)

I was wheeled into the lab early in the morning and the sticking was no easier. The head nurse campaigned with my nephrologist to install a catheter, that there would be no way the technicians at the dialysis centers would be able to hit the vein. Dr. Rinner examined my arm, squeezed it and said the fistula felt just fine. He looked at the direction she had been sticking and suggested that she angle to the right. She hit it right away. This would be a continuing theme over the next two years. I got a full treatment and it went smoothly.

So other than needle problems, my first days of dialysis had gone extremely well. I was delighted to be feeling so much better. In fact, I was wondering why I had been so resistant for so long. Of course my life was severely changed. I had spent the days in the hospital reading reams of information on the need to restrict fluid intake (a major handicap in the wine business!) and severe dietary restrictions. And I could never stray too far from my new friend for life the dialysis machine.


Now we can start the tales of miscommunication and confusion that seems to be part of the American standard of health care. I was through with three successful days of dialysis and was ready for discharge. Except that the social worker who was supposed to have been working on arrangements with a dialysis center for my future treatments didn't get started until the last minute. So instead of being discharged, I sat in my room and waited, incurring another day's charge on the hospital bill.

Finally she came in with arrangements and schedules and I called Susan to come pick me up. Then the social worker called back and said my insurance wouldn't cover the treatment. I told her that was wrong, I had their approval letter with me. It turned out that she made arrangements with a center that is not on my insurance's approved list. Nice. She went back to work. Susan showed up and we both had a warm nap in the sunlit room.

Eventually the social worker called and asked if a Monday-Wednesday-Friday schedule at 7am would be acceptable. I said that would be perfect. Which it was! The center was about a mile from the house. I would be able to keep working full time by working closing shifts  on Monday and Friday. I could take my day off on Wednesday and be able to go to choir rehearsal on Wednesday evenings. My first appointment at the dialysis center would be the next Friday at 11 in the morning.

Dialysis: The Second Day

Much to my great surprise the first day of dialysis did not instantly transform my life into eternal darkness and despair. Instead I actually felt better! I took a nap when I got back to the room and when I awoke, I felt great. Went for a walk under the trees outside the hospital in the crisp November afternoon, did some more tai-chi and went back to the room and read. Susan came by for dinner, we no doubt watched some Law and Order in as normal as semblance of real life as can be managed in a hospital room. The hospital was relatively quiet. I had a semi-private room, but was the sole occupant!

The second day started with the usual round of vital signs and blood draws and an earlier than expected trip to the dialysis lab. Things didn't go so smoothly this time. Some swelling around my relatively immature fistula made it difficult to find the vein. Ouch. I can't remember how many sticks it took to hit the mainline. They couldn't hit it sideways. After a number of tries, the nurse called her supervisor in to try. After a few more sticks, she finally hit it. The session went three hours this time. The flow was iffy and the machine kept shutting down. Staying still was imperative. Reading a book one handed lying flat on your back and keeping still is impossible. The tv's were on Good Morning America. Nerves prevented sleep. Three hourse seemed like six and I was happy to get back to my room. Now the future did not seem so bright, having to repeat this three times a week for the rest of my life.

Dialysis: Life Begins Anew

To recap, I entered the hospital the morning of November 6, 2006 to begin dialysis. It was a crisp cool day with blue skies and I walked in by myself instead of being wheeled into the emergency room in a wheel chair. The doctors like to start dialysis treatments in a hospital so that everything can be closely monitored. I checked in and waited in my room for things to get going. I had a book and did tai-chi to relax. My arm was shaved and after a bit I was wheeled down to the dialysis lab.

Two of the biggest needles I have ever seen were inserted into the baby fistula in my arm and for the next two hours, my blood was circulated and recirculated through the dialysis machine where excess fluid was removed along with urea, creatinine, other waste products which diffuse into the dialysis solution.

I had to lie very still and keep my left arm absolutely stationary. The needles tend to float and fluctuate in the currents of the blood flow. When the open end touches the wall of the vein, the flow slows and the machine shuts down. Flow rate is everything. Blood pressure is monitored very closely. The cuff stays on throughout treatment and the dialysis machine checks pressure at regular intervals. The whole process went smoothly and was closely monitored by my nephrologist and the nurses. The needles were removed, my arm was bandaged and I was wheeled back to my room.

After a short nap I awoke and felt fine. Outside it was still a beautiful fall day. After months and years dreading this day, everything seemed calm and relaxed in a very surreal way.

Thanksgiving

A beautiful Thanksgiving day here in Dallas. A wonderful relaxed afternoon with family and some old friends, great food and drink and deep notions of how blessed we all are.

Late in the day, after the crowd had dwindled, we were talking about parents and aging. Susan's mother is battling severe arthritis in her legs and back and slowly losing her powers of concentration and memory. Her world has shrunk greatly in recent years, but she can still be a delight to be around. My parents lead an amazingly active life for their years, but they have their issues as well. Mom recently starting sleeping connected to an oxygen supply, a fact with which she does not seem totally comfortable. 

I commented that it's not easy to admit that one's life is technologically dependent. 

Helen laughed and said, "Yeah, you're one to talk!"  

She's absolutely right of course. If you look back at my earlier posts, the over-arching themes are stubborn denial and resistance to increases in the level of treatment.

It was then I realized that I'm still fighting technological dependence. I was able to recount my history up to the first dialysis session and then the telling stopped. I was able to write a day-by-day account of my transplant, but it's been difficult to starting telling the story of two years on dialysis.

I guess I'm still resisting that damned life-giving machine. But I am thankful for it.

Back to Work

Sorry for the delay. That last week, the last month was way intense! And then it culminated in a cold and four weeks of upper respiratory crud which finally seems to be clearing after a couple of weeks of antibiotics and asthma inhalers. Yuck!

Great news for the Hoefling families. Bruce's donor is 'official' and transplant is in the works. His brother is now kidney free. When the damn polycystic things stop working, all they can do is cause pain, discomfort and misery. The only thing that made me happier than getting rid of that last basketball sized kidney was getting a new one, well, getting one that was previously owned, to use the current nomenclature.

My story will pick back up after that first day of dialysis two years and two weeks ago. As I recall, it involved a nurse, a needle and a fistula that didn't want to be found....

First Anniversary: A Special Day.

My apologies, the time line gets crazier as I make the jump from this day last year to the first anniversary of my transplant. Tuesday morning, I received a call from Randy at the office asking if I could help at a Bordeaux Dinner Wednesday night at The Mansion on Turtle Creek. This question came as quite a surprise. I was not even aware of the event. But I wasn't too surprised to decline. The dinner was with a small group of customers honoring the proprietors of two estates that have become cornerstones of Sigel's Bordeaux portfolio, Alfred Tesseron of Chateau Pontet-Canet from Pauillac and Alexandre and Francois Thienpoint of Vieux Chateau Certan and Wings from Pomerol. 

I will omit my notes on the meal and the wines. Needless to say, it was all very special. And quite delicious! If you want to see notes on the dinner and the wines you can read them on my wine blog, Greenville Avenue Wine.

It's difficult to write about the last toasts of the evening. John turned the floor over to Dr. Goran Klintmalm, who started the Baylor Organ Transplant Program 25 years ago. He spoke softly and eloquently of the 'double blessing' made possible by organ transplants. He finished by turning and offering me a toast on the first anniversary of my transplant. I was totally overwhelmed. And he is right. Organ donation and tranplantation is a gift of life and I have been doubly blessed to be a recipient. The knowledge and awareness of this gift grows deeper with every passing day.

I took the opportunity to thank Dr. Klintmalm and his team of miracle workers who do this work. I thanked the donor who died and because of his family's decision to give, I and many others lead fuller, more productive lives. Without the miracles of modern medicine my life would have ended three years ago. It is humbling to be the recipient of such a great gift and it truly gives my life new meaning and purpose.

As Mr. Tesseron and Mr. Thienpoint and others came up to offer congratulations and thank me for what I said, I was once again overcome. 

What a special day!

Transplant! (Almost)

It was an exciting 30 minute drive to Fort Worth. The surgeon had called me while I was on dialysis and said we had made the correct decision to accept the kidney. It was a terrific match and the big news was I was the primary recipient. He would visit more with me later in the day when we were checked in. We travelled light. We were told not to bring personal belongings as I would be changing rooms several times. We checked in through the emergency room, they were ready for us and it went quickly. I noticed another patient checking in for a kidney transplant and it was poignant moment. If the day went as planned, I would be receiving a kidney and she would be going home disappointed.

It was a busy day, as I was taken for X-rays and met with the anesthesiologist, the doctors would be doing followup, doctors who would be designing my cocktail of immuno-suppressants and assorted medications, the chaplain, the social workers and who knows else, all the while talking and texting about the news to family and friends.

Towards the end of the afternoon we met with the surgeon who explained the current situation. Evidently arrangements were still being made as to other recipients of organs from the donor. The donor's body was being kept alive on machines and when everybody was ready, the organs would be removed and transported to the recipients for immediate transplantation. The goal is to minimize the time the organs are not connected to living tissue. At this late point in the day, we were still several hours aways from surgery. He recommended getting started early the next morning so everyone would be fresh and rested. Who was I to disagree with that! So we spent the night in the hospital. The sofa converted into a bed, so Susan was able to sleep in relative comfort and would not have to drive to Dallas and back.

 Early surgery was set for Tuesday, October 28.

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.

A New Day

It was a long glorious October weekend with cool sunny days and blue skies, but filled with death and sadness.

Sunday night (or Monday morning - I have always maintained that it's night until either you wake up or the sun comes up - whichever happens first!) I woke up to hear the telephone ringing. Damn, it was 3 am! At that time of day it's either bad news or a wrong number. Since I was awake, I got up and stumbled through the house looking  for the cordless phone. Of course the phone stopped ringing right before I found it, so I took it back to the bedroom. Before I got there it rang again. It was 3:18 am. 

"Hello, is this David Waddington?" 

"Yes it is."

"Hi, I'm Bettina Goin with Baylor All-Saints Transplant in Fort Worth. I have a kidney offer for you...."

In Memoriam

As detailed in the last post, October 2008 was turning into a month of deep emotional reactions to my experience with kidney failure and dialysis. It was about to get deeper.

I think it was Monday the thirteenth that I came into work after dialysis. One of the managers was due back after a week of vacation, I was greeted with the news of his unexpected death. Charles was a few years younger than I was, but he had died alone in his apartment from a massive heart attack. While Charles did not live a retiring lifestyle, the news came as a great shock, he was not a man who was used to backing down to much of anything. A few days later we received news of the unexpected death of a former colleague who had long been a fixture on the local wine scene. Mike was 56 when he died, the same age I had been when I started dialysis.

Both men were mourned at gatherings of friends and colleagues. Many bottles of wine were shared with tales and memories. The service for Mike was on Saturday, October 25. The following day, some of us from the store gathered Sunday afternoon with Charles' family and friends for a meal and a time together to celebrate and remember. The month had started with deep reflections and the realization that I was living on borrowed time. The death of two friends drove the point into my heart.




 

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.

A Bleak Fall

Fall 2006 started dark when I was turned down for transplant because I was too heavy. Reality was beginning to crash into my stubborn will. Losing 15 pounds seemed impossible. I was already eating minimal meals and was trying my best to at least not gain more weight. Exercise was out of the question. Just getting through a day's work took maximum effort. I was always exhausted. Driving home without falling asleep in traffic or at red lights was a struggle. My days off work were just spent resting. I knew that dialysis was inevitable, but I continued to reject the notion and kept living my life with grim determination and a smile on my face.

I should add at this point that I was not in complete denial. In the spring I had seen the vascular surgeon and had surgery to make a fistula in my left arm. The procedure involves selecting a large artery that takes about 50% of the blood that goes into the hand and connecting it directly to a large vein, creating a super-highway to carry the large amount of blood at the high volume required for hemo-dialysis. As blood flows through, the vessel grows larger. It takes about 4-6 months before the fistula is large enough to be used for dialysis. If emergency dialysis is required, a surgeon installs a port in the upper chest with tubes that connect to the dialysis machine. In my typical style, I had the surgery on my day off, was discharged about 10:30 pm, and was at work the following morning!

I was seeing my nephrologist and receiving Procrit injections and  IV Iron infusions every two weeks. The treatments certainly kept me going. I continued to work full-time and sing in the choir at church which meant both weekly rehearsals and several hours every Sunday. Not to mention the occasional work related wine tastings and wine dinners and the occasional bottle of wine (professional obligations, don't ya' know!) I don't remember going to the State Fair that year. I'm sure we did go, but not for long. Just a brief walk-around for a look at the Horned Toads (hand-painted cast replicas, check this guy out!), and a corny dog and a cold beer. It was a struggle through all those years. I can even remember waiting for Susan to get the car and come pick me up. Those who know us will realize the extremity of the situation.

Finally, at the end of October, I went in for an appointment. After waiting for the lab results, Dr. Rinner looked me in the eye and told me that while I had fought a valiant and courageous fight, I was not going to make it through the holidays without a trip to the emergency room with Acute Kidney Failure.

Arrangements were made to enter the hospital the next Monday to begin dialysis. It was the first Monday of November, 2006.

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.

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?

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!

Under the Knife

And so it was decided that David would undergo an exploratory surgery to determine the nature of the baseball size mass on his left kidney...

Sounds simple enough. Decisions like this are made everyday to undergo massively invasive surgical procedures. But reason is difficult at these times of high stress. There is no way to avoid the stess. The baseline condition that causes one to consider surgery is stressful in and of itself. The tone of the doctor who gave us the second opinion had been devastating. We faced four possibilities and none of them were good.

1. The mass could be cancer. Not good, but probably no need to worry about PKD.
   
2. Removing the mass would destroy the kidney, leaving 1 kidney still ravaged by PKD. 
3. The blood filled cyst could be drained. Better, but 2 kidneys are still ravaged by PKD.
4. Everything's fine on the inside. Unlikely, but 2 kidneys are still ravaged by PKD.

Not a pretty picture, but the fear of cancer drove the decision and I went into the hospital in the middle of June, 1996. Sure enough, removing the mass, a blood filled cyst, destroyed the kidney, so it was removed. Oh, well. The remaining kidney functioned just as well as both kidneys had been functioning, and the once failing redundant system was now just a single failing system.

The surgery was traumatic. The kidney was the size of a small football and the long incision went around the side and through abdominal muscle. Any movement was extremely painful. Being moved around and taken for X-rays was excruciating and I learned the value of a morphine pump. ER was a brand new show and as I forced myself to walk the halls, it was on in every room. I couldn't watch it. It was too real! 

I gradually healed and went back to work and life resumed. I lost a little weight and felt good about that. But the weight came back and the blood pressure kept needing more and more medication. And the remaining kidney kept growing in size. PKD just doesn't stop.

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.

Discovery

In December of 1989 I woke up to severe pain in my right side. It felt like kink and I could stretch in just the right way it would clear up and I could take the boys to school and go to work like a normal day. Instead it just got worse and Susan insisted on calling the doctor who said to just go straight to the emergency room. It seemed silly to me, but the pain was getting worse. After dies and scans I was diagnosed with a kidney stones and after many IV bags and a many clicks of the morphine button, I gave birth to a pair of spiny stones.

But the weird thing I noticed through the haze of the painkillers was the procession of specialists coming in to see the condition revealed by the scanner photos with their paragraphs and  arrows on each one telling all about them. And I remember Dr. Rinner sitting on the window sill telling me that I had an incurable disease that would likely cause no more difficulty than possibly difficulty obtaining insurance. And that was my introduction to Polycystic Kidney Disease.

I did a modicum of research and the odds were slightly in my favor of it never causing problem. It was genetic, but there was no history in the family of kidney disease. It was Christmas. When I was released I helped distribute my company's Christmas cakes and went to Christmas Eve dinner at my sister's house. Like nothing had happened.

And life went back to normal. Except I sure was pissed at how much those specialists charged to come in and see my X-rays. It seemed like I should be charging them!