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.