Wednesday, April 6, 2016

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.

Saturday, February 27, 2016

"So, What's It Like Being You?"

"So, what's it like being you?"

That's the question an old friend used to ask. Often in a randomly aggressive manner. Usually with humor, but really, you never knew.

Another old and mutual friend used the phrase as the topic of a post on his blog Philosophy for Real Life. He remembers several answers, but suggests that the answer of a university professor is the correct answer. "I don't know. I have no basis for comparison."

My answer: "Pretty damn good."

Of course I really have no comparison, but after battling PKD, two years of dialysis, a year with no kidneys, and now being seven years post transplant, I know the alternative. And as of today, I have no wish to explore the alternative. Life seems more and more miraculous with every new day.

Last week was check up time at Dallas Transplant Institute. I've been going in every four months for the last couple of years, though this visit was delayed a couple of months by the Holiday season. It was also time for two annual tests, a 24 hour urine sample and the dreaded Glofil test, so it was a long, cold Thursday morning, drinking iodine laced diet coke and countless glasses of water.

But I passed, all conditions are stable. Kidney performance was the best it's been since the onslaught of the BK Virus some years ago. Historically it's been variable with creatinine hovering between 3 and 3.5. It measured 2.85 in September, 2.55 last week, so that's two labs in a row showing improved performance. Not that I can read anything into the numbers except to say, "Great!"

My blood pressure was excellent, my pulse was unusually low, but it has been for some time now. I saw a new doctor and she seemed concerned, she decreased my blood pressure meds and knocked my Prograf down 0.5 mg. We'll see what happens. So I'm back to tracking blood pressure a couple of times a day and an appointment with a cardiologist for a routine check. I go back to the Clinic in a month, so we'll know more then.

I have much bigger news on the ophthalmic front. The Doctor has decided that its time to go after my cataracts, so I am going in for a new lens (len?) in one eye Monday morning. He will also do a laser adjustment for my small astigmatism. Since my right eye is my weak eye, he will adjust the lens for close to medium range. In two weeks he will install a monocular lens for distance in the left eye. The combination should pretty much eliminate the need for glasses. So that's like, HUGE!

The other problem with the right eye is scarring and chronic iritis which stemmed from one of the treatments for the BK Virus. They attempted to use two meds to rid me of the virus. Cidofovir, which is toxic to the kidney, and Leflunomide. Both eyes, my right eye in particular, became inflamed immediately. I have had erratic but chronic inflammation ever since. However, the doctor is not concerned with complications from the surgery.

That's my news for now. I'll report back after my next appointment!