PKD and 'Fistular' Responsiblity

My fistula was created in my arm by a vascular surgeon about six months before I began dialysis. That's the minimum time needed for the fistula to grow large enough to carry the volume of blood required for dialysis. Mine was a 'baby' and hitting it with a needle was complicated by the fact that my veins run deep in my arms. Whenever a new 'patient tech' had to stick me, it frequently required several sticks and help from the nurses to set the needles so the blood would flow smoothly. 

I did have a complication. The 'aneurysm' was building in two spots and the vein wasn't expanding between them. The flow was poor and the machine couldn't run at the proper speeds. A second 'day' surgery was required. The surgeon did the repair leaving me with two 2" scars running perpendicular to the fistula. Each scar has 8 very neat stitches. Right below the wrist. Very Frankenstein. Very successful. Ease and quality of treatment were greatly improved.

Readers of the blog might remember that my struggles with PKD and Chronic Kidney Failure were largely characterized by a spectacular run of denial. My nephrologist had advised having the fistula surgery over a year and a half before I had it done, but I ignored his advice.

But what if my kidney had failed during this time of denial? Dialysis cannot take place without an access. Needles cannot reach blood veins large enough to handle the flow. Ports are surgically installed under the collar bone that allow permanent access to main trunk arteries. The same ports are used for other therapies requiring the repeated infusions of large amounts of fluid. Chemotherapy is probably the most common. 

So if at any time during that year and a half, my kidney had failed (remember, I was down to one at this point) and I entered the emergency room with acute kidney failure, I would have had to undergo surgery before receiving the life-saving dialysis treatment. I think this path is extremely common. I don't remember seeing any first-time patients at my dialysis clinic who didn't receive their dialysis through a port. 

That's one of the relative blessings of PKD. There is usually plenty of warning. Diagnosis should come long before the need for dialysis. If you have PKD, how did you find out? Have your kidneys failed? How long did you battle PKD before it won out?

My diagnosis came during an episode of kidney stones ten years before my first kidney was removed and twenty years before my transplant. During that time my blood pressure skyrocketed, largely due to PKD. An acute bout with flank pain led to the first nephrectomy. Pressure from the large size of the kidney cut off urine flow in my ureter causing renal failure. A stent restored urine flow and kidney function. All these episodes were clues, but I still didn't believe my kidney's would fail. There's a lesson here....

Acute flank and abdominal pain took my son by surprise a while back. He blamed a famous fast food chain's new Angus burger, but the big surprise came from the emergency room doctor, "Have you ever heard of Polycystic Kidney Disease?" 

He is still young and hopefully has many years before the possibilities of renal failure, dialysis and transplant complicate his life. But he can be under long term care. Routine blood work will let him and his doctors know how his kidneys are functioning and let him know when it's time to start taking things more seriously.

I can only hope that he's more responsible about managing his disease than I was.