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!

Thursday, September 17, 2015

Post Transplant Weight Gain

Checking in after another three month check-up. And everything remains the same, creatinine is stable, although it is high compared to normal kidney function. The last BK virus showed a count of 250. When the virus was causing problems it was well into the tens of thousands of copies in the serum sample. Other numbers are normal. Well, except cholesterol. It was wa-a-a-ay down.
Not coincidentally (in the opinion of Dr. C) was the fact that my weight was down 20 pounds. He asked if the weight loss was intentional. Of course, I said. He asked if was going to continue. Of course, I replied.
Weight gain has been a lifelong issue, I've always been on the heavy side. My grandmother said I had her big bones. I was heavy in high school, but lost the weight during the hippie years in Austin. The pounds have accumulated slowly and steadily through my adult years.
When PKD finally did in my kidneys, my first transplant application was rejected because I was too heavy. I was told to lose 15 pounds and reapply then. But that was not going to happen, my condition was too far gone to exercise and my will was not enough to change my eating habits.
When I started dialysis treatments, I started shedding pounds immediately. Apparently a good amount of my weight was due to kidney failure and water retention. Lester, one of my dialysis nurses used to pinch my legs and gleefully talk about how much water they could pull out with the day's treatment. It wasn't long before I had lost enough to reapply for a transplant.
As the pounds continued to fall off, I felt better and better. I was already doing Tai-Chi before my dialysis treatments and I began walking. Losing weight became an obsession. Before long I was walking several miles at a time and charting my progress on Excel spreadsheets complete with graphs.
After a year my last Polycystic kidney was removed. That was over eight pounds gone right there!
At my lowest weight, I had lost 40 pounds and was loving it. Then I slowly started gaining a little weight. Maybe I had dried out too much? The doctors suggested that the muscles I was beginning to build weighed more than the fat. I don't know. I didn't worry too much.
Then I received my transplant.
And I knew that my 'skinny' days were over. I would be taking steroids as part of my anti-rejection medication and weight gain is a side effect of most the other meds as well. And I began to slowly put on the weight. About 8-10 pounds a year. For 6 years.
Until this summer. In order to keep getting the lower rate for 'health-conscious' patients, United Health Care insisted that I enroll in a weight loss program called Naturally Slim. So I did. Susan followed the program as well, so we were able to support one another and between the two of us we were able to stay through the program for the last ten weeks of the summer.
The program has no tricks or magic diet. It teaches you to change your eating habits to mimic the eating habits of people who are naturally thin. Only eat when you're hungry. Only eat as much as you need. Chew slowly and enjoy every little bite. Eat slow, take pauses. Watch your portions. Take leftovers home. Eat whatever you want, but NO SUGAR! That's it. Exercise is encouraged and emphasized, but for health purposes, not for weight loss. I'm happy to say that it works and Susan and I both are close to our 10 week goals.
It's too late to stop now!

Tuesday, September 16, 2014

Still Here

I know it's been a while since I posted.

I do check in from time to time and readership of the blog is at an all time high. BK Virus and Fistula are the two most frequent search words used to find the blog which would indicate that readers are new to BKV and dialysis and are searching to hear from a fellow patient. The occasional comment bears that out. I can't say how moving that is. When I started telling my story, I had never talked to someone with PKD, let alone BVK.

But that's a good thing. No news is said to be good news and that's the case here.

Had a checkup at the Transplant Center this morning and labs were great. Well, for me they were great. The big number is creatinine clearance which shows how the little kidney is working and today it was 2.8, which is the lowest I've had since my bout with BK Virus a couple of years ago.  Normal for a healthy kidney is 0.6-1.3. My clearance seems to fluctuate between 2.8 and 3.3 and that's my new norm. The kidney was scarred and damaged by the BKV inflammation so I live with some of the tiredness and ankle swelling that goes with chronic kidney disease. Aggressive medication keeps my blood pressure down, that's what really damages the kidney.

I go back in three months. We'll do a 24 hour urine sample, a Glofil test and a bone density scan and get a detailed profile of just how the little kidney is performing. That will be just after my 6th anniversary. See you then.

Right now I'm off to set up my next colonoscopy. Fun times coming up!

Monday, June 17, 2013

Spring Post in Early Summer

Well, it's been a while since the last post.


Work's been busy and connectivity has been lousy here at the house. A lot of complaining about the service provider, but it just turned out to be  a loose USB connector.

But my health has been good. I continue to feel strong and energetic. The only problem is that I continue to slowly add on weight. Combine that with lack of exercise and I'm just another damned couch potato.

My last check up was three months ago when I also endured another Glofil test. The results were great, showing improved kidney function over the last two appointments. In fact the creatine clearance was the lowest since before the onslaught of the BK Virus two years ago. I go back in the morning, I hope the results stay the same!

Best wishes to all those who find this blog. I hope that it is a helpful voice. It is gratifying to see the number of Google Searches for BK Virus, Fistula, Ankle Swelling, Adjusting to Dialysis and PKD that reach this blog. I wish that I could have a voice that had been through it when I was wading through those waters.

Tuesday, November 27, 2012

More Lab Reports

I hope posts like this continue to appear, but less and less frequently.

Went to the clinic bright and early this morning for my three month check-up, and everything was great! Cholesterol, sugar, red blood count, potassium, etc etc etc, all normal. Creatinine continues to be out of normal for anyone but me. It was down from last time (3.3 from 3.6) but the 3.6 was up from where it's been over the last year. So, normal for ME!

Note to anyone who has not read the blog. My transplanted kidney was damaged during my struggles with the dreaded BK Virus. Whether the damage is due to inflammation from the virus or from the neurotoxic drugs used to fight the virus is not clear, but whatever, the damage has been done. The good news is that the kidney function has been stable for sometime.

I was to have had the BK serum level checked, but lost my prescription and did not have the test performed. So I will get that taken care of next Monday on my day off. I'll post the results when I have them.

My next checkup will be in four months, that's March. 2013. That will be the day for my annual Glofil test which uses radioactive tracers to get an accurate measure of how well and kidney is clearing toxins.

Happy Holidays to All!!!

Four More Years!

Four more years of normal life is what I've been blessed with by my kidney transplant.

Four years preceded by two years of dialysis, two years of intermittent ill health and hospital visits, and before that, eight years of declining health following the removal of my first kidney. all due ultimately to Polycystic Kidney Disease.

In the last year before transplant, I finally came to grips with being on an artificial life support system, i.e.: dialysis. In other words, I came to see dialysis as a blessing, not a curse. I was fond of saying that my new birthday should be the day I started dialysis. My old kidneys had failed me and in any other century of mankind I would have been dead. Instead, I had been blessed with two years of machine-assisted living.

That realization came just weeks before my transplant. No one was more supportive of my "new birthday"  than the person who was intimately involved with my first birthday, my Mother. Every year on the last day of October, she would send me a birthday card to remember these extra years of precious life.

Until September. She died a peaceful death at home in the arms of her family as hospice helped her struggle to breathe with her cancerous, smoke-damaged lungs.

And I passed through this anniversary of my transplant without giving it a thought.