Easter Everyday

Some weeks go by and I don't spend much time reflecting on my transplant. Life goes on a a seemingly normal pace.

But these weeks are rare.

Usually the transplant experience occupies a prominent place in my consciousness. As well it should. Reminders are constant, like being alive for starters. And being alive and not being tethered to a dialysis machine.

The symbology of Easter is always cause for reflection with its stories of death and renewal of life. Transplant surgery is by definition renewal of life. The drastic and extraordinary act of taking a vital organ from either a living or deceased donor and placing it in another body would not be undertaken unless the recipient was otherwise at the point of death. In my case it was "end stage renal failure."
End Stage. End of the line. Point of no Return.

Good Friday is always cause for encounter with grief. The music is monastic and medieval, the setting stark. As a chorister it is the most emotionally dynamic music we sing. Sadly, it has the smallest attendance of any of the Easter Week services in which we sing, but somehow that seems to intensify the spirituality and changes performance into emotion. Through life is death. Through death is life.

Ten years ago I finally began to accept the stark reality of my diagnosis and made an appointment with a vascular surgeon to create the fistula that would allow my veins to carry the increased blood flow necessary for dialysis. Dialysis which was always inevitable, but now imminent.

My nephrologist had told me to schedule the appointment eighteen months previous and had brought the surgeon in to see me while I was hospitalized for a blockage caused by my enlarged polycystic kidney. The date is anchored by the Texas Rangers failed pennant run which collapsed when Frankie Francisco threw the legendary chair into the stands in Oakland. 2004, look it up. We watched it in the hospital.

Of course, my response to my nephrologist was classic. I didn't see a doctor for the next eighteen months. I finally collapsed from anemia and spent two days in the ICU receiving blood transfusions and the next two weeks hospitalized.

Finally, in April 2006 I had vascular surgery to create my fistula.

The fistula matured for six months and was still developing when in November Dr. Rinner told me that while I had fought a valiant fight, it was time to start dialysis. Either that or wind up in the ER at some point during the holidays. My natural kidneys had failed. My options were dialysis or death.

Two years of dialysis were followed by a deceased donor transplant in November 2008;

Now, ten years later my strength and vitality surprise me every day. In 2006 I had no idea I was as sick as I was.

The fistula is still working and still maturing. My vein, which was deep and difficult to stick is now strong and prominent. It is my lifeline and constant reminder that everyday is a gift and a blessing.

Crux Fidelis, King's College, Cambridge.

Four More Years!

Four more years of normal life is what I've been blessed with by my kidney transplant.

Four years preceded by two years of dialysis, two years of intermittent ill health and hospital visits, and before that, eight years of declining health following the removal of my first kidney. all due ultimately to Polycystic Kidney Disease.

In the last year before transplant, I finally came to grips with being on an artificial life support system, i.e.: dialysis. In other words, I came to see dialysis as a blessing, not a curse. I was fond of saying that my new birthday should be the day I started dialysis. My old kidneys had failed me and in any other century of mankind I would have been dead. Instead, I had been blessed with two years of machine-assisted living.

That realization came just weeks before my transplant. No one was more supportive of my "new birthday"  than the person who was intimately involved with my first birthday, my Mother. Every year on the last day of October, she would send me a birthday card to remember these extra years of precious life.

Until September. She died a peaceful death at home in the arms of her family as hospice helped her struggle to breathe with her cancerous, smoke-damaged lungs.

And I passed through this anniversary of my transplant without giving it a thought.

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: 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.