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!

Spring Post in Early Summer

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

Sorry.

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.

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.

Your Three Months are Up, Back to the Clinic!

It's been three months so I went back to Dallas Transplant bright and early for my periodic check-up.

In the interim I had my annual physical exam with my primary care physician a couple of months ago and assume everything went OK. As usual, they asked if I wanted to access my results online. As usual I screwed it up. As usual the time window expired before I got the information. If it had been dire, they would have called me. I hope.

I seem to be a little more tired these days, ankle swelling seems a little worse, my feet hurt more and I put on some stubborn pounds over vacation. (Well, what's vacation for, anyway???) Extra pounds explain all ills. I didn't expect to find many changes.

And there were no drastic changes. Hemoglobin, Blood Sugar, Calcium, Phosphorus, Blood Pressure, Protein, Sodium; all these measure and more were normal and unchanged. What's missing? OOPS. Creatinine. Up to 3.6 from 3.1. The PAC (who has seen me many times) didn't show concern today. Let's hope the creatinine is not up again when I go back at the end of November.

What causes change in creatinine? After all, it is a measure of kidney function. As before (see 'Surviving PKD: It's not a Rejection, but...), it could be rejection, it could be BK Virus, it could be degradation of the little kidney due to the previous BK inflammation.

It's been a year since the BK serum level was checked, so it's time to do a BK test again. The test has been prescribed. It is done at Baylor Hospital's Outpatient Lab. One of these mornings, probably next week, I'll get that done. I'll post the results as soon as I have them. (Family Warning: It might not be until my next appointment!)

The other test I need is a colonoscopy. (Did I say NEED???) Well, it's been five years and I did have a couple of small polyps, it's definitely the thing to do. I'll need to get that scheduled, probably in mid to late September or October.

I can't remember if I talked about my last colonoscopy in a blog post. It was done in October 2007 as part of my transplant evaluation, just before my last polycystic kidney was removed. At the time the kidney was the size of a basketball and its size distorted the normally straight lines of the colon. I can painfully attest to the great difficulty Dr. H. had forcing and manipulating the scope through the distorted canal. He apologized after the procedure and said that if he had known it was going to be so difficult, he would have put me under anesthesia. At that point I think he just gave me another valium. That puts an interesting wrinkle into the next procedure.

I'll let you know in the next post.

BK Virus: A Recap

Good news! I found the missing email. It had been filed under Important. Who knew there was such a folder. The reader asked how high my numbers had been, so I've been tracking them down through my blog pages. Here's what I found along with creatinine levels:


The BK was discovered after elevation of creatinine to 2.6 was noted during a normal visit to the clinic. A kidney biopsy was performed to determine whether the cause was rejection or BK Virus. BK was confirmed with 497,000 copies of the virus found in the serum test.


Dr. M reduced dosage of both Prograf and Myfortic and prescribed a round of Ciproflaxcin. After two weeks serum test copies were reduced to 73,000. Creatinine was slightly elevated, blood pressure was becoming more difficult to control.


Two weeks after the Ciproflaxcin, the serum test revealed an increase to 156,000 copies. Moreover, Creatinine was continuing to rise (3.1) indicating the inflammation was doing damage to the kidney.


Dr. M reduced the Prograf again and discontinued the Myfortic. Two weeks later, the serum test revealed reduction to 45,000 copies, but two weeks after that it was back up to 54,000. Creatinine continued to slowly elevate.


Then he began a series of treatments with Cidofovir, an antiviral that had been developed to fight aids. Its primary use was to treat retinal inflammations in HIV patients. Its primary side effect is its toxicity to kidneys. He also administered an infusion of IVIG (intravenous immuno-globulin) which produced fever and convulsions (I reacted horribly to the drug.)  


Serum tests revealed a reduction in copies, first to 3150, then to 650. However creatine was up to 5.6. We don't know whether it was the toxicity of the cidofovir or the reaction to the IVIG that caused the damage, or the continued damage from the BK Virus. Dr M then prescribed treatment with leflunamide,  an antiviral whose primary use is to treat rheumatoid arthritis. It caused a retinal inflammation and was discontinued.


The next two serum tests, however, revealed 0 copies of the virus. A test twelve months later revealed the same result. So I hopefully remain free of the virus. Creatine came down to 3.1 and has been steady for the last year. I have had no further issues with high blood pressure.


The reader asks about a safe level of BK Virus. I don't know if there is one. My doctors chose to keep fighting even when the level was low. If the virus is active I think it's doing damage. Anyway, good luck. Your doctors should be willing to discuss all options with you. The response to BK was not set in protocol when I was undergoing treatment.

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.

Wondering Why After a Mild Cold

At some point I started noticing that when I get a cold, it goes away quickly. I don't seem to generate gallons of pflegm for days on end and wind up with a racking cough. I sneeze and sniffle for a day or two and then maybe wheeze a bit.


I also started noticing that paper cuts I get and work and nicks received from the kitchen knives don't seem to get as infected as much. They just heal over and that's that.


And then one evening a customer was asking me what might be in a specific wine that causes his wife to have an allergic reaction. (Allergies are a surprisingly common topic in wine departments, headaches are the most common symptom. No one suspects allergies when vodka or whisky is involved!) What was interesting here was that it was a specific vintage of a specific estate that was causing the problem.


The speculation was quick and wide ranging. P is a pretty smart guy, he's a Ph.D who's worked for a long time in the semiconductor industry. I mentioned my light response to colds and he proposed an interesting theory.


That the production of mammoth amounts of mucus is our immuno-reaction to the cold virus. Since my immune system is repressed by drugs so they won't attack my kidney, it doesn't have as much a response to the cold virus as a 'normal' system would have. 


I remember some horribly long asthmatic reactions previously to colds after my transplant, but those occurred during my initial levels of medication. When I encountered the BK Virus,  the dosages of immuno-suppression medications were radically reduced. The goal was to leave enough immuno-response to fight the virus, but not enough to fight the kidney. It was a tricky balance, but it seems to be working. 


And ESPECIALLY against the cold. And WITHOUT a huge, snotty, overly pflegmatic mess. Nice!


I then wondered if anyone else had noticed this same reaction, so I looked to the blog o-sphere and found a thread on a bulletin board named "I Hate Dialysis." The thread contains comments from a number of transplant patients who are surprised that they don't seem to get as sick as those around them.


The key seems to be finding the balance in the immuno-suppression medication. Which could be difficult. The doctors tend to over-medicate for obvious reasons. Under-medication results in rejection.

A Year Later

It's hard to believe that it's been a year since I posted.


Writing the blog came fast and furious in the year following the transplant. I was highly charged to relate my story. I wanted to spread the news of the miracle of transplant. I wanted to talk about my struggles with Polycystic Kidney Disease, End Stage Renal Disease and dialysis.


I had never been in contact with anyone who had had PKD Until I came home from my transplant and found an email from Amy about her husband Bruce's struggles with the same issues I had faced. Through my blog and the blogs of others we developed a small community in several states of people dealing with PKD and transplants.


Our blogs are now voices floating in cyberspace waiting to speak to those who search them out. And search them out they do. This blog has had more readers in the year of inactivity than in the years I was writing!


My posting did slow down after my story reached the transplant, but it picked back up after the BK Virus reared its head and I had another story to tell. And, after almost a year and treatment by reduced immuno-suppressants and Cidofovir infusions the BK count has been negative for over a year.


Now my health is good, well it's stable. The BK did its damage. Creatinine is steady but high 3.2% on the last lab, but better than it was a year ago. The Glofil test is slightly improved as well, but the kidney is still not functioning near 100%. Fluid retention is a problem and that's lead to weight gain, but energy and strength are good, better than they were in the 5-6 years before transplant.


Life is good. I am certainly in no position to complain. My natural organs failed over five years ago. It's a miracle to be alive!

PKD: Options. Anyone? Anyone?

I received an email yesterday from a woman with PKD. She was looking for a doctor who specializes in PKD. I didn't have an answer. Here is the exchange:

I was researching a doctor who specializes in PKD in Texas. I have not been able to find anyone and am hoping that you might have some information... I come from a family of PKD sufferers, my mother is 70 and had a transplant 18 years ago and just recently went back on dialysis, my sister died in 2006 three days after her kidneys were removed, my brother has it but is early in the stages and I myself have it. Only one child from our family was free of PKD and she donated her kidney to my mom. I have been going to the same doctor since 1993 however, I do not feel that her level of knowledge in PKD is as expansive as I would like. Since this is my life and I can only be in control of certain circumstances I want to be in charge of what I can. Do you have any suggestions on physicians that specialize in PKD? 

Ouch. Tough question. We all want to be "in control of certain circumstances," but that's tough with PKD. My reply:

I wish I had some information for you. I assume you've talked to the folks at the local chapter of the PKD Foundation.  You can reach them at northtexaschapter@pkdcure.org.

I was the first in my family to know of PKD...The doctors actively treated symptoms (mainly swelling and blood pressure, I never had major pain issues) and that was about it. Which suited me as I tend to be rather stoic and ignore symptoms. (Some would say I deny...) The result was that I never even knew anyone else with PKD until someone reached out to me through Facebook. Then I started to blog, just to provide a shared experience.

Throughout the whole experience I have been a patient of Dallas Nephrology Associates. I have had a good relationship with my doctors, though I wish there had been more that they could done.

So. That's my story. I would be interested to hear what you find, please stay in touch.

I confess, since my transplant, I have not thought as much about PKD. Susan went to the PKD Foundation's National Convention a couple of years ago when it was here in Dallas and their focus seems to be on research. You can check out some of the clinical trials here., look for studies which are recruiting,  check status. Here's one from NYU Med School that shows promise: drinking lots of water slows cyst development. For real! They finished recruiting volunteers almost two years ago, but but haven't posted the results. It sounds silly, but what are cysts but 'ugly bags of mostly water?' There are lots of trials and lots of research and it's encouraging.

But, what of treatment? I can't find much that's new. Same as it's always been. Treat the symptoms. Watch out for any sign of high blood pressure. Kidneys are pretty resilient, the cysts can squeeze them like a sponge, but high blood pressure is what does them in.

The New Base Line

It's a clear wintry afternoon. The warmth of the sun has given way to shade. Another round of ice and snow is predicted for tomorrow. But it's almost mid-February, and in Dallas, spring is just a few weeks away, though with all the ice we might not have daffodils for Valentine's Day.

And I am ready to be over being depressed by the bout with BK Virus, because I think that depression has been my recent base line. Looking back at my BK experience I can see that I've gone through a classic sequence of the stages of grief.

What are the stages of grief? The Kubler-Ross model was outlined by Elizabeth Kubler-Ross in her 1969 book On Death and Dying. (It's great to know that some of the great visions of 1969 had some validity!)

     Denial:  lasted through diagnosis and early stages of treatment
     Anger:  when treatments didn't work and blood pressure started fluctuating
     Bargaining:  through the end stages of treatment, eradicating the last bit of virus
     Depression:  when I realized that the kidney was not going to heal itself.
     Acceptance: when I accepted the fact that the kidney is not going get better and that I am back to living with Chronic Kidney Disease. Fatigue, swelling, shortness of breath, water retention. All of which leads back to cycles of Anger and Depression.

Which is where I am on this winter day. My last labs were two weeks ago. Creatinine clearance was 3.6, better than the 3.9 of Jan 4. Other numbers corroborated the creatinine clearance. Still a touch anemic, but that's been consistent for the last six months. The good news is that the kidney function seems to be stable. Some variation is to be expected. The suspicion of rejection has been cleared and they don't see the need for a biopsy. That's good news. And my visits are now four weeks apart which is also good news. 

All of the antiviral treatments were expensive and the copays are going to take time to pay off. The deductibles for insurance more than doubled with the new year, so the less I  see the inside of a hospital the easier life will be.

Here's to Stability!!!

Is It Really that Bad?

Wow, the last post caused some concern.

Going back and rereading it I can see why. I was hoping for an unlikely outcome and it didn't happen.

Was I surprised?

No.

Was I disappointed?

Yes. 

Maybe that's why they call transplant a 'treatment' and not a cure.

BK Virus: Won the Battle but Lost the War?

That's the way it looks after today's visit to the clinic.

It was a great holiday season. Business was good, days were busy, filled with visits from good customers stocking up for the holidays. At home, we had a gorgeous Christmas tree and Travis and his friends filled the house and kept things hopping! Family and friends overflowed into the back yard on a cold New Year's Day all eating chili, tamales and blackeyed peas to bring good luck to the new year.

I went into the clinic briefly a couple of weeks ago to provide samples for lab tests to monitor kidney function and went to Baylor yesterday for a serum test to measure the BK virus. Should have gone to Baylor last week, but late nights made for short mornings during the busy week. Timing was not critical, it just means that the results weren't back when I was at the clinic today.

However, results of the labs were not encouraging. Creatinine was 3.8 two weeks ago and 3.9 today. Clearance was 25% a month ago when the creatinine was 3.3, so clearance is approaching the 20% mark, when is when we can start the transplant process all over again. The suspicion is that the decline is due to scarring during the BK inflammation. It could be caused by low-grade rejection caused by the reduction in immuno-suppressants, but rejection is not thought to be likely. I'll go back in three weeks and they'll recheck the labs and then in all probability they'll do another biopsy of the kidney to confirm that the scarring is BK related, not rejection.

And then I guess I just wait for the kidney to gradually stop working.

Should have eaten more blackeyed peas.

 

BK Angst

Yeah, I felt pretty down in the dumps last week. My eye was screwed up, kidney function wasn't great. Emotional vectors were definitely pointing down. But I'm still getting up, going to work, laughing, scratching, and having a good time. And so is my friend and colleague Eric. Only he's got an inoperable tumor in his liver, the latest blow in his four year battle with colon cancer. He's the one with courage. "Back where I come from, we have men who are called heroes..."

Me, I'm doing OK. This week's labs show the creatinine's down a bit, so that's a good thing. The 24 hour urine test confirmed the results of the glofil test: kidney function's not great. I can feel it. I get tired more easily than I have in the last couple of years, but I just have to watch myself. The BK Virus can always flare up as can the iridocyclitis in my eye. They are now part of the background radiation of my life.

I asked if the kidney will possibly heal as time goes on without active inflammation from the BK Virus or the toxic effects of the Cidofovir but was not given much encouragement. Stability would be good, she said.

But I can hope; take care of the little kidney. Watch my blood pressure, try to limit caffeine and alcohol, and  hydrate, hydrate, hydrate.