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.

BK Virus: Having Pressed the Attack, Who Won?

So I arrived at the hospital, early for my appointment, armed with two new books, ready for a day of various infusions. Check in was smooth, apparently being setup as a serial patient means your paperwork stays done! Good news I guess... if it's good news being here that often. It was a busy day in the morning unit and surgical patients get the priority, so it was a while before the nurse came in to get things going. I should have had a clue about things to come when one of the bags said "Chemotherapy."

First up was a bag of saline to flush and hydrate the system. The nurse set the pump to dispense the bag in an hour and we were underway!

Next on was the Cidofovir, an anti-viral. It was set to drip through in two hours. This is the drug whose prime side effect is damage to the kidney. They kept close tabs on my condition, checking vitals frequently. Everything went smoothly and I was feeling fine.

Lunchtime came along with a turkey sandwich. There was another chair in the room and it was interesting visiting with my roommate and his wife. They'd gotten married when they got out of the Navy after the war and now live near a lake about an hour south of Dallas. They've been in and out of Baylor Hospital many times over the years, first for their children and more recently for his liver transplant, his battle with throat cancer and now his impending battle with lung cancer. He was in receiving two units of blood, his second treatment of transfusions. They've been lucky, she's had good insurance since her first job and doesn't know what they would have done without it. They worry about their son who has a small business with just two or three employees and there's just not enough money to cover the cost of insurance. So the son just does without.

 When the Cidofovir was done, they emptied the previous bag of saline then began the  IVIG (IntraVenous ImmunoGlobulin) infusion. (IVIG, that's what they call it, those in the know!) Because it was my first treatment, they took it slow, taking about three hours for the infusion. And that was it! They gave me the standard Out-Patient list of symptoms to look out for and I gone. Happy to be walking and stretching and getting the hell out of there.

The aches started about ten minutes from the house. It felt like when you're getting the flu. I was shaking and breathing heavily when I got home and the aching was really starting to hurt. I lay down on the bed hoping things would calm down, but the aching, shaking and breathing just intensified. I was feeling feverish and nauseous. I got up and called the nurse at the clinic and really don't remember much of that conversation. I remember she asked about my temperature. I remember saying that even if I could find a thermometer, I was shaking so hard the chances of getting it in my mouth were about as good as poking it in my eye!

After that clever retort, I headed to back to bed and managed to fall into a deep sleep. I awoke and the phone started to ring (or maybe it was already ringing.) It was Susan, calling from San Antonio, and she caught me at my absolute groggiest. I still hadn't reached the point of rationality. She had the good sense to call my sister who came over and sat with me. The shaking had stopped. I was able to drink some ginger ale and take some pain-reliever. The reaction had reached a plateau.

I thought I felt good enough the next morning to get dressed, scramble an egg and go to work. After wandering around like a zombie for an hour, I decided to go home, much to the relief of my coworkers. The rest of the day was spent with a splitting, throbbing headache which caused its own nausea which lasted through most of the next day. Three days later I almost feel normal.

So, which drug was the culprit?

Poking and googling points to the IVIG therapy. One study shows 83% of the patients reported headaches lasting from 4 hours to several days. Some were considered mild, most were described as having severe intensity with a throbbing, pounding, pulsating quality with some causing fever, nausea and vomiting. Sounds pretty familiar.

So, OK. Why wasn't I prepared? 

I thought I'd done my research. But I really focused on the Cidofovir and that was my mistake. But the doctors didn't say anything about possible side effects from either drug. The infusion was under the supervision of a doctor, but all I saw was his/her name. Never had a chance to visit. The handout at discharge was generic and primarily concerned about infection.

Shoulda known better....

BK Virus Day 6

So after hitting the clinic 3 times in the last three months, it's been 3 times in the last 6 days. Plus a day in the Outpatient Clinic at Baylor Hospital. Combined with the broken foot, the medical front is getting intense again.

A little good news for a change! Creatinine was down to 2.0 from 2.2. Don't know if it means anything, but it sure beats another increase. Everything else was in the normal range except the red blood numbers are a little low. So I need to eat more steak and creamed spinach, I can do that!

Had an interesting conversation on the suject with Dr. Nesser, he's the director of the Dallas Transplant Institute (DTI) clinic. (Dr. Melton, who performed the biopsy and met with me in the hospital is the head Nephrologist for the Baylor Transplant Program.) Dr. Nesser correctly assumed that I had been googling BKV over the weekend and was curious as to what I had learned. Evidently I passed the test and  was relieved to find out that the information that I've propagated in the blog has been correct.

One point of clarification. Acquisition of the virus is usually accompanied by a mild cold after which antibodies are formed and the virus retreats to the urinary tract where it lies dormant until allowed to become active again by a round of immuno-suppressants. Thus BKV occurs mainly in kidney transplant patients and occasionally in HIV patients and bone marrow transplant recipients.

When researching it is important to look only at the most current studies. The field of inquiry is young and studies are usually limited to individual transplant clinics, so sample sizes are very small. Different clinics follow slightly different protocols, but results are about the same. For instance Dr. Nesser told me of a clinic that tests all patients regularly for BKV starting soon after transplant. Dallas Transplant Institute (my clinic) waits until the creatinine starts to increase to start testing. The early testing sounds like a good idea, but it's a lot more expensive and has not produced improved results. Bloodwork is a good indicator and works for measuring progress, but diagnosis can only be confirmed by a biopsy.

So for now I will be following Dr. Melton's course of treatment. He cut back my dosages of prednisone and Myfortic and left the Prograf intact for now. Dr. Nesser said that occasionally a mild urinary tract infection can aggravate the virus so he prescribed a regimen of an antibiotic to eliminate any possible infection.

We're heading out on the road to Santa Fe and Salt Lake City at the end of the week. When I get back I'll go the Outpatient Lab at Baylor for a blood draw and then a few days later (three weeks from today) I go back to the Dallas Transplant for another checkup and we will know if any progress has been made.

So. Everyone's up to date!