Transplant: Twelve Years Out

I remember Halloween twelve years ago. It was three days post-transplant. I was lying in my bed at All Saints Hospital in Fort Worth and my transplant surgeon with his attendant nurses came traipsing through my room dressed as 101 Dalmatians. Yes. In full spotted dog costumes with tails wagging, ears flopping and stethoscopes flying.

Now it seems so long ago. Transplant followed two years of dialysis which followed twelve years of declining health as Polycystic Kidney Disease slowly ravaged my kidneys.

Through those twelve years of kidney failure I was not truly aware of how sick I was. I knew I felt bad but my condition was masked by denial and the grind of everyday life. It was indeed the proverbial 'slippery slope.'

Not until I was cleansed of toxins and excess fluids by dialysis did I begin to have some glimmer of how sick I had been. And then transplant released me from the purgatory of dialysis.

Now, twelve years later, as we head into an uncertain future, I have so much for which to be thankful.

My left arm carries the scarred reminder of my dialysis lifeline. It never lets me forget.

Latest Update From the Lab and Would the Reader...

OOPS!


I had an email tonight from a reader who after a successful transplant has been diagnosed with BK Virus. I made the mistake of opening her message while pouring Pinot Noir to 125 customers at a wine tasting tonight and accidentally deleted the message. So, if you sent me and email and didn't hear back, I apologize so much, I know it's a difficult thing to do. 


Please resend. I know the importance of communication. As I have said before, I never communicated with anyone who had PKD or BK Virus until I began blogging. So far Surviving PKD has had 10,621 pageviews, over 30 google searches in the last few days on issues such as weight gain with PKD, fistulas for dialysis, and yes, BK Virus.


My story continues on a positive track. Visits to the Dallas Transplant Center's clinic are now quarterly. The most recent was 4/17/12. Lab results were good. Hemoglobin is normal, blood pressure is under control, weight gain has stabilized, and creatinine is stable at 3.1. Which is not great, but it was as high as 5.8 during the onslaught of the BK Virus. I feel great. There are daily reminders of how sick I was during the last days of PKD and End Stage Renal Disease.


So, thank you for reading. If the blog has helped please let me know. If you have questions, please let me know. If you sent me an email today, please resend.


THANKS,
Dave.

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.

Jump to October, 2008

Please forgive this two year jump in the timeline. Obviously dialysis was successful and there are more bumps of learning and adjustment to cover in the story. But by October, 2008, I had totally adjusted to life on dialysis. I was feeling so much better and more alive than I had been in the preceding years of trying to ignore Stage V Renal Failure. The improvement was dramatic.

October has always been a momentous month in my life. Both in Atlanta and in Dallas, it is when the heat finally abates, the weather shifts and summer is really over for another year. Days are either cool, rainy and meditative or sunny and glorious, with blue skies and brisk northern winds. The first of the month sees my birthday and in Dallas we get the great State Fair of Texas.

It was after my birthday last year that I fully realized what had happened when I started dialysis. The time that had been allocated to my life by my incurable Polycystic Kidney Disease had been 56 years.  According to the doctors, it was doubtful I would have seen New Year's Day, 2007. Without the miracle of technology, Susan would have been a widow and my sons without a father.

 I began to have a glimmer of the blessings I had received.

Life Begins With a Needle

Monday, November 6 2006 was a clear fall morning, cool crisp air, pale blue skies with wispy clouds as Susan dropped me off at the hospital on her way to school. It was very casual, she might have been dropping me off at the store. It was my third hospital admission of the year. The first was through the ER, the second she dropped me off for day surgery to create my fistula. Today the fistula was going to be tapped for dialysis.

We have developed a ritual whenever I go into the hospital. She gave me a flat gold chain right before we were married. The only time I am without it is when I am hospitalized. She takes the chain from my neck and puts it around hers for safekeeping. And it keeps me with her.

Check in was smooth and I soon found myself in my room. The TV was terrible, but I had brought several books and occupied my time reading, napping. Doing tai-chi helped as well. Soon the nurse came in and shaved my arm and eventually took me to the dialysis lab. I had done some research and had a general understanding of what was going to happen and had enough knowledge to make me the dread the process.

However I was not prepared for the size of the needles, and they would start with small ones! Apparently my veins run deep in my arms. For years I had been flattered by nurses who were relieved to encounter 'an easy stick' when it came to drawing blood or installing an IV. But the fistula was small and deep. It only took a few sticks to hit the fistula... the first time.

And then, there I was: hooked up to a machine. It's a powerful moment. I was no longer an independent being. I was totally dependent on advanced modern technology to stay alive.