skip to main |
skip to sidebar
The day went very smoothly once we got to the hospital. Check-in was smooth and easy and unlike last Friday which was a mob scene in the waiting room, today the room was virtually empty. Even nicer was the room which was opened to the north side of one of the older buildings, so the north light was filtered through large old live oak trees (and no direct sun!)
Dr. C monitored the biopsy which was nice. He's a good doctor who is willing to discuss every facet and listens to what the patient is saying. He performed some of my pre-transplant exams, post-transplant immediately after the transplant and I have seen him a couple of times for my routine check-up's as well.
The biopsy nursing crew consisted of the same crew who was there last time. They take pride in what they do and I think they like to think of themselves as the "pros from Dover." It's a relaxed but professional environment. When I wanted to see the needle, they showed me the needle. When I wanted to see the tissue samples, they tried to show me the tissue samples. Unfortunately I couldn't raise my head high enough to see them, but the effort was made.
And then it was the mandantory six hours of bed rest. Timing was good, I caught the PGA championship. (The first biopsy was during the U.S. Open - nothing like a golf nap!)
Dr. C came by late in the afternoon. The cell-count was not back yet, nor were the results of the stains. We'll get that information Monday when I go back to the clinic. The samples had been examined under the microscope and the feeling is that although most of the inflammation is from the BK Virus, there could be an overlay of inflammation from a smoldering rejection. To combat that possibility, he prescribed an increased regimen of steroids over the weekend, going back to normal dosage on Monday.
So, the good news is that my body is not rejecting the kidney despite the drastic reductions in immuno-suppressants. The bad news is that the BKV is still wrecking havoc on the kidney. I expect we'll do another Cidofovir infusion in a couple of weeks, but predicting the future in this BK Battle has been pretty iffy.
But I'll take today's news. I was really nervous and upset going into the test after the disastrous reaction to last week's infusions. I think the frustration and depression came through in the last post.
4:20 finally came around and I was able to get up and out of bed. I got dressed and the nurse rolled me down to street.
And with that, Susan and I headed out for a plate of Nachos and a Margarita to start the weekend!
When I was a salesman, I hated making cold calls. I dreaded rejection. When I was a young man, I hated calling girls for dates. I dreaded rejection. In fact I still don't like making phone calls. Fear of rejection runs deep.
And now I live in Post-Transplant land and rejection has a whole new meaning.
The subtext of growing up in the 50's and 60's was the over-arching fear of nuclear war. In Post-Transplant land the subtext is fear of graft rejection. The walls of the Transplant Clinic are plastered with the signs of rejection: clammy hands, cold sweat, squeaky voice, stammering... No No NO! Stay focused. Repeat after me, "The signs of graft rejection are: pain in the area of the new organ, slight fever, decreased urine, rapid weight gain. If you notice these symptoms, Call the Clinic!"
Whatever the symptoms, all signs are ultimately confirmed by lab reports which show increased levels of creatinine in the blood. Which means the kidney ain't workin' as good as it should. So that was me, getting my labs back on Tuesday with creatinine level up to 2.2 (Normal is 0.2 to 1.2) The elevated result was confirmed by Thursday's labs.
And that was me, walking into the hospital early Friday morning for a Kidney Biopsy. A small amount of kidney tissue is removed which will tell the nephrologist exactly what's going on in the kidney so the doctor can make the proper diagnosis and prescribe the proper courses of treatment.
The procedure sounds a lot worse than it really is. A long needle with a grabber attachment is inserted into the kidney. It grabs a tissue sample which is removed. A local anesthetic is used to deaden the area. A sonogram is used to guide the procedure. Tension is way worse than the pain. I was alarmed and startled twice. First, when the tech asked for a Spinal Needle. (Yikes! I've heard horror stories about such things.) Second, when the doctor activated the grabber. It was very sudden, very loud and visceral. SNAPCLICK! And then it was over. Very quick and routine. I was not the first kidney biopsy nor the last for the lab today. I think they did four, back to back. All transplanted kidneys. (The photo is from the Columbia University fact sheet kidney biopsy patients.)
Then it was back to my room where I had to stay flat on my back for four hours, or until the blood cleared from my urine. (Bleeding issues are the most frequent and serious complication of the procedure.) I never did show any blood in the urine. By all means, schedule this procedure during World Cup and the US Open, especially if it's at Pebble Beach. Just me and the TV. Laid out with no interruptions except for the occasional nurse. Father's Day should be so good.
Dr. Melton came by late in the afternoon to discuss the findings. I sell wine, he buys wine. I'm always a lot more comfortable when our conversations are on my turf.
First the good news. He doesn't think it's rejection. (Eyes close. I enjoy a small smile while tension flows from my body.) Reality wakes me up. What's driving the loss of kidney function?
And the bad news. Have you ever heard of BK Virus? Neither had I. Well, it's pretty widespread. 80% of the population has it, but natural resistance is developed at an early age. It was first isolated in the urine of a post-renal transplant patient named B.K. in 1971. The use of immuno-suppressants as anti-rejection medications allows the virus to become active. And there's a special something that allows it to be especially active in renal transplant patients. It's always difficult to read these papers, but it looks like the virus becomes active in a relatively smallish percentage of patients and actually causes renal failure in a smallish percentage of the affected group. The virus can cause scarring of tissue throughout the urinary tract and in the kidney itself and can lead to kidney failure.
Hmm. Sounds like the same number games I encountered when I started learning about PKD. ONLY a smallish percentage of a smallish percentage are chosen. So, not only am I not rejected, I'm also a winner! Only being a winner with PKD and BKV is an extremely dubious distinction.
So, what can they do about BK Virus? Well, the problem is that it's a virus..... Everyone knows you can't treat a virus.
The first step is to reduce the dosage of immuno-suppressants. The goal is to fine tune the dosage level to prevent rejection, but allow the body's natural defenses to work. Dr. Melton game me instructions and I started with tonight's meds. Frequency of labs will be increased so we can monitor the effect. There are anti-viral medications that can be used down the line, but they have their own issues. The most desirable goal will be to find a dosage that will keep all factors in balance.
No one said it was easy. The last year of relatively carefree existence sure was sweet!
