Tuesday, September 29, 2009

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.

Monday, September 28, 2009

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.

Thursday, September 24, 2009

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.

Thursday, September 17, 2009

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!

Friday, September 11, 2009

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.

Monday, September 7, 2009

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.

Tuesday, September 1, 2009

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.