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.

Hello Blog. It's Me Again...

Hello Blog, it's me again. Do you remember me?

It's been a while. I've read my last post a number of times and each time I'm surprised at how final it seems. It wasn't really my intention, but the muse has been difficult to find. The story reached premature catharthis last fall with my involvement in the National Health Care Debate (CNN did call Sunday afternoon when it looked like the vote was going through. They were tentatively going back to people interviewed in the fall for reaction, but decided to go in a different direction.) And of course the story reached its culmination and emotional peak at the first anniversary of my transplant.

That's when the blog started drifting. I tried going back to the story of dialysis, but that was becoming a series of lectures on dialysis and that's not how I want the blog to read.

Today is a cool, damp spring morning in Dallas. We had 5" of snow Sunday, two warm, sunny, glorious Spring days and then a day of intense thunderstorms. I just returned from a brisk walk which followed a session of tai-chi in the ump-teenth time I have tried to resume regular exercise. I really need to now. I've put on too much weight and my blood pressure is rising. Two things that really mess up kidneys. (At least PKD is no longer a concern!)

Since the anniversary of the transplant, I have really relaxed and have just tried to enjoy a normal life. I feel great, my energy is good. I can work long days without getting exhausted. I notice the difference singing in the choir at church. I can reach both higher and lower notes and sing with more volume and intensity. Not always a good thing, I have noticed a higher correlation between my mistakes and the stoppage of rehearsal! I didn't worry too much about weight during the fall and put on a few pounds. Then the battery on my bathroom scale died in the middle of December and I put on more than a few pounds!

While on my walk this morning my thoughts went back to the one time in my life when I really paid attention to exercise and diet and that was during dialysis. The secret to not being devasted by the treatments is to put on as little weight as possible between treatments. It's difficult because the kidneys are not removing excess fluid and that's especially true if both kidneys have been remvoed! But the less weight ones gains, the less fluid has to be removed during dialysis. Believe me, the recovery from treatment is much easier!

I became obsessive about exercise, weight, and blood pressure. I kept a daily spreadsheet which tracked everything, down to daily, weekly  and overall percentages of changes. I would walk as often as possible, increasing distances and even starting running. If you've known me all my life, you would realize how radical this behavior was!

When I started dialysis, I needed to lose 15-20 pounds to be considered for transplant. I had lost 35 by the time of transplant and was in the best physical condition of my mature life. Except for the fact that I had no kidneys and without dialysis I would have been dead!

So need to return to the good life. Diet does not need to be as strict, but it needs to be controlled. Exercise needs to happen. And now, after entering my vitals on my spread sheet, a session of tai-chi and a brisk walk, it's time for a little breakfast, a shower and off to work!