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.