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.

My Fistula, My Constant Reminder

My fistula is my constant reminder that transplant is treatment, not a cure.

It's still alive to the touch and buzzes with the flow of blood. The technical term is the "thrill." Even though a year and a half have passed since my last dialysis, my fistula never lets me forget.  It started aching a while back and seemed to grow weak, but renewed flexing and exercising the forearm have brought it back and I think it's even stronger now than it was. I can feel its presence almost up to my elbow. In quiet moments, I find myself running my fingers over the vein, feeling life pulsing through my arm. A touch-point.

The fistula is the access for dialysis needles, created by joining a high pressure artery and a low pressure vein. The veins are chosen for their relative pressure and proximity to the surface to facilitate ease of the sticks. Mine is in my left fore-arm just above (below?) the wrist. It originally diverted about 50% of the blood going to my hand and turned it right around back to the heart. Like in Star-Trek when they looped an orbit around the sun to pickup speed, it's designed to carry huge volumes of traffic at high-speeds. During treatments, the needles were placed in different locations over the 6" span. The main access points are raised over the normal surface of the arm and are visibly prominent. The aneurysms of most fistulas are much larger than mine. My veins run deep in my arm which made life difficult when needles were placed by someone not familiar with my access.

A rejection episode could begin tomorrow, next week, next month or next year.  Rejections are usually treated by adjustments to medications made in a hospital under close observation. But if the graft kidney should fail, dialysis is always there as a life-saving alternative.

The darned thing can keep me awake at night if the fistula is in contact with a pillow or the mattress. The pulse is so strong that it resonates through the bedding and vibrates in my ear. Loud and demanding. Not unlike a jackhammer or a bad hangover.

But, I adjust. It's my lifeline.