Been a Few Minutes...

It has been a few minutes since my last post. A Google search says that this blog is likely inactive and that's largely true.

But it might be time for it to come back to life. 

To recap, I am 17 years since transplant. Slowing down a bit going into my 75th year. Troubled by Atrial Fibrillation and occasional gout, but still in pretty good health. 

My return to the blog is motivated by a couple of things. 

First and foremost, I am beginning to receive counseling from my transplant team about the inevitable failure of my grafted kidney and transition back to dialysis. YIKES! That was a wakeup call. More about that later.

Secondly, I have become active on a couple of FACEBOOK groups and REDDIT threads on PKD and transplants and finding people looking to hear from and interact with other patients. That is a community I never experienced when I was going through kidney failure and transplant. It was the community I attempted to create and did create with this blog.

So, look for more to come.

THANKS for reading.

LIFE is Good. 

Since by Man Came Death - A Podcast Text

 In the Fall of 2020 choir members were asked to submit texts for a Podcast to tell how a specific piece of music, hymn or anthem influenced our spiritual life. What follows is the text I submitted. It was chosen and broadcast a year ago.

Saint Michael and All Angels Episcopal Church

Dallas, Texas

Podcast: Since by Man Came Death 

First A Bit About the Music 

Everyone is familiar The Messiah, the great oratorio by George Frederic Handel.What people may not be as familiar with is the architectural structure of the work. 

Briefly, the piece is divided into three sections. The first tells of the Nativity. The second tells of Christ’s Passion and ends with the great Hallelujah Chorus. The third tells of Resurrection, of the promise of redemption culminating with the final victory over sin and death. 

Today I am focusing on the First Chorus of the Third section. Text is taken from Job and Paul’s First Letter to the Corinthians. The first Air for Soprano begins, “I know that my Redeemer liveth” and ends “For now Christ is Risen from the Dead.” Christ has died. Christ is risen. 

It is followed by a short, dramatic Chorus that redefines the situation with no uncertainty both in word and music. In the first statement, man is drawn into the equation. 

Since by man came death, (slow and mournful)

By man came also the resurrection of the dead. (Joyful and declarative)

 

A restatement makes the relationship universal. 

For as in Adam all die (slower and more excruciating)

Even so in Christ shall all be made alive (vigorous and triumphant) 

“So,” you might ask. “What’s this got to do with you? What makes this so special to you?”

 

Well, that’s what I’m here to talk about.

 

A Bit About Me               

I was born with a little known uncurable genetic disease called Polycystic Kidney Disease. It began affecting me in the mid 90s when my blood pressure shot through the roof and one of the many cysts began bleeding. That was when they took out my left kidney. Prior to the surgery I went for a second opinion. The doctor said in a raised voice, “Don’t you know you have a fatal incurable disease?” I was shocked. I hadn’t thought in those abrupt terms. 

Life returned to a sense of normalcy until several years later severe pain sent me back to the ER. On release I was told to prepare for the inevitable dialysis. Did I? Hell no. I responded by not going back to the doctor for a year. In denial and stubborn I was. Dialysis was a dark cloud that I knew I could just ignore. 

A year later it all hit the fan. I collapsed with internal bleeding and spent two days in the ICU. Reality began sinking in. Finally my Doctor told me that I had fought a long, hard fight, but the fight was over. My options were to begin Dialysis or wait for the inevitable collapse from kidney failure. 

I remember the dread, lying on the bed as the nurse threaded the long needles into my vein and hooked me up to the machine that now would be keeping me alive. 

After a year of Dialysis I embarked on the path to Transplant. Once you are accepted into the program, you go through intense physical examinations. An MRI revealed a spot of cancer on my remaining kidney so the kidney was removed. It was the size of a basketball and weighed eight pounds. A normal kidney is the size of a fist. 

Now with no kidneys, the darkest truths began to hit home. I was at the end of my natural life. I was at the end of my string. I was living on borrowed time by the grace of a machine. 

And then, almost twelve years ago the phone rang. Three AM. Monday morning. It was Bettina, calling from All Saints Hospital in Fort Worth.  “Good morning!” She said. “I have a kidney offer for you!” 

I’d only been on the list for a year, there had to be a catch and there was. The kidney was considered high risk. To allow me to make a decision I learned details that are not usually shared. The donor was a young man who died in a motorcycle accident and who had had a history of intravenous drug use. He was clean now, had been for a number of years. The young man had turned his life around, gotten married and had a young son who was now fatherless. The threat of drug use had caused others to turn down the kidney. We accepted the kidney. 

I remember several things about my recovery. First was a strong sense of guilt that I was alive because another man had died. Thoughts of his wife and son brought tears. Still do. The good folks in the prayer ministry after every service have shared my prayers for them on every anniversary of my transplant. 

And there was a snippet of music that kept running through my thoughts. An earworm. I couldn’t figure out. A passage of music. So familiar. It stayed with me and wouldn’t’ go away. While recovering at home I finally figured out what it was. Handel. Messiah. 

Since by man came death,

By man came also the resurrection of the dead. 

For as in Adam all die

Even so in Christ shall all be made alive.               

The words felt so true. I am not so vain as to think that that young man died for me, that our connection was anything other than a pattern of coincidence. Death, was real for him. For me Death was avoided by the miracles of modern medicine and modern technology. 

But the greater truth, the fact that I am writing this podcast nearly twelve years later, is the foundation of a deeper sense of the great blessing that is life, that is love, 

Several weeks into my Recovery I decided I wanted to go church.

"Are you sure?” asked my wife. “You were supposed to stay home for another week.”

“Yes,” I said. “It’s not like I’m going to go sing in the loft. We’ll sit in the congregation.  We’ll come right home.”

So we went. And it happened that the anthem for the day was “Since by Man Came Death.” From the Messiah. The first chorus of the Resurrection section that had been ringing in my ears as I lay in recovery from my transplant. And here I was in church listening to it being sung by my own choir. I was blown away. As the choir sang, tears streamed down my cheeks as all my emotions were released. Of course I had had no idea that it would be sung. I have to believe that it was coincidence but it was a staggering and amazingly mysterious coincidence. A mystery that is with me to this very day.

And that was twelve years ago.

Every day I walk with that young man, his wife and young son.

Every day I walk with this new life.

Every day is another blessing.

Even so in Christ, shall all be made alive.

Thank you for listening.

Handel: Since by Man Came Death

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.

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.

"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!

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!

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!