BK Virus: 8.25 The Weather Turns

It was a relatively cool and definitely a rainy morning when I left the house for an early lab time and doctor's appointment at the Dallas Transplant clinic. Relatively cool means 72 rather than 85 at 7:30 in the morning. The first cold front of the season had finally broken through the long run of 100+ degree days.

The wind switched to the north early yesterday soon after I got home from my second infusion of Cidofovir. The morning in the hospital went quickly and smoothly and I was not experiencing any of the wrenching side effects from my last infusion. So the culprit was definitely the immuno-globulin, so if it's ever offered, watch out! (Although I don't think it has that effect on everyone.) I was extremely nervous about the infusion. My pulse was racing and my blood pressure was high all morning, but it came down quickly once I got home.

The early lab today was to monitor the effects of the drug on my kidney. (Remember that Cidofovir's primary side effect is its nephrotoxicity.) I received the lab results from both this morning and last Friday and the results from both were good. The creatinine was way down from 5.1 to 3.5 on Friday and it improved to 3.0 today. The hope is that the inflammation from the virus is going down allowing the kidney to function. The other possibility is that the kidney is recovering from the trauma of the immuno-globulin reaction. The family logic is "both." Whatever. It's going down and I'm feeling better. 'Nuff said.

I mentioned to Dr. Nesser that "it's ironic to be so happy about a 3.0, when just a few weeks ago we were so alarmed I was in the hospital the next day to check it out!"  He just smiled and said, "It wasn't so good the other day, but it's pretty good today."  Hmm. I guess the meaning's always in the vectors.

Even bigger news was the progress against the BK Virus, the number of copies of the virus cells was way down. From 54,500 (from a plasma sample taken just before the LAST infusion) to 3,150 (from a sample taken just before the infusion yesterday.) So that's huge! The difference is mainly due to the Cidofovir infusion. It's definitely working.

 So unless I start showing really bad symptoms I'll go a couple of weeks without seeing a doctor. Another infusion is scheduled in two weeks with labs and a doctor's visit the following morning.

On the third front, I'm still somewhat anemic, but the numbers are getting better as well. Insurance finally approved the Procrit injections, but I'm feeling OK, so we decided to see if I continue to improve without incurring the expense. 

And with that I ventured home through the cool, cloudy August morning, had some breakfast and a nice morning nap!

BK Virus: 8.16

The weekend started last Friday with a restful day in the hospital dozing after the biopsy. Travis drove up from his new home in Boerne, Texas (in the hill country just north of San Antonio) to get another carload of stuff, so it was a very pleasant weekend. Too much to eat, too much to drink.

After the trauma of the immuno-globulin reaction, the big jump in creatinine and all the anxiety that I experienced leading up to the biopsy, it was somehow relaxing to hear that the inflammation was being caused by the BKV and that my body was not rejecting the kidney. I had almost convinced myself that I would be back on dialysis in a matter of days. I'm thinking now that while I might wind up back on dialysis eventually, it won't be for a while and it won't be without a fight.

And with that positive frame of mind I walked into the clinic Monday afternoon for labs and a visit with the doctors.

And for a change the news was good.

Creatinine was down significantly, from 5.4 to 4.1. Everyone breathed a big sigh of relief. Of course what caused the improvement in kidney function is not necessarily clear. It could just be that the kidney is recovering from the shock of the reaction to the IVIG. It could be that the increased dosage of prednisone over the weekend reduced the inflammation.

The number of copies of the virus was 54,500 vs 45,000 a couple of weeks ago. It sounds like a significant difference until I remember that the initial count in June was 497,000. So the virus is holding steady, creatinine is coming down, time to go back on the attack.

I'll go in for another round of labs at the end of the week and then back into the hospital next Tuesday for another infusion of Cidofovir. And then back for a another visit to the clinic the following day.

And no doubt do it all over again!

(The image shows the cell structure of a rejected renal transplant.)

BK Virus: Biopsy Two

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!

BK Virus: 8.12

Went in for a blood draw this morning to see if the creatinine miraculously dropped overnight, but no. It seems that things get suddenly worse more than things get suddenly better.

So I go in for the biopsy tomorrow and find out whether the damaging factor is rejection or BK Virus and to determine the next course of action. It's a tough conundrum. Treat the rejection and the BKV increases. Treat the BKV and the door is open for rejection.

Miraculous improvement not anticipated anytime soon.

BK Virus: Murky Waters

Another day, another set of labs. Some good news! The creatinine is down a bit: 5.3 from 5.6. Not much, but it's better! Now the question is, "Why?"

Of course the answer is tied to the cause of the increase and we are faced with the same multiple choices as yesterday:  1) reduction in BK Virus, 2) recovery from impact of Cidofovir or 3) recovery from the massive reaction to the immunoglobulin.

And the favorite choice is 3) recovery from the massive reaction to the immunoglobulin. The action plan is to delay the biopsy a day and run another set of labs tomorrow. IF the creatinine falls below 5 the assumption will be that the kidney is recovering from the infusion and we will go into a wait and see mode. If the change is minimal, we'll go ahead with the biopsy.

In addition more meds are being removed from the cocktail. Myfortic was removed in favor of Leflunomide which is mainly used to treat rheumatoid arthritis. It is an immuno-suppressant which is also anti-inflammatory and will help the kidney recover. Two blood pressure drugs were removed and the one remaining was increased. I should start back on a round of Procrit treatment to bring my anemia under control. That's good news. I need more meat and protein to feed the Procrit (aka Epoegen, Epo).

So it's off to work. My other direction was to hydate like crazy to keep fluid flowing through the kidney. But it's good general advice on these August scorchers.

HYDRATE OR DIE!!!!

BK Virus Lands a Crushing Blow!

Went into the clinic today to see how things fared after last week's infusions. When the dust settled, it became apparent that the creatinine level had jumped to 5.6, a whopping 54% increase over last week's number. Just for reference, normal ranges between 0.3 and 1.1. That sucks!

Now the question is what caused this week's jump. Three options. One, the BK Virus is really ramping up. That was last week's theory and was why we did the infusions last Friday. Two, based on the extreme reaction to the IVIG, it is possible that the IVIG did damage to the kidney. Three, the Cidofovir, itself a noted nephrotoxin, did damage. 

The early favorites are the first two options. The BKV was already on a roll as evidenced by last week's numbers. The reaction to the IVIG was so strong and off the charts and it can damage the kidney. The dosage of Cidofovir was very low and controlled and the results are usually stable and predicitable. But really it's anyone's guess.

So now the plan is for me hydrate like fool today and to go to the clinic tomorrow and hope for better results. Assuming the numbers stay the same or continue to worsen, I'm scheduled for another biopsy on Thursday. The small sample of kidney tissue will tell us the nature of the damage to the kidney and give us true cell count of the BKV in the kidney itself.

And then????

I don't wanna think about it.

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: 8.04

Fighting this damn virus is like herding cats. When one number  is under control, another goes wacky. The strategy set one week is changed the next week as the numbers change. But the core element of the strategy is to prevent further damage to the grafted kidney, so as the kidney is threatened, there is less patience to let a treatment run a slower course.

It was good news/bad news at the clinic this morning. The cell count was down to 45,000, the lowest concentration of virus since it was first discovered. That's the good news. It could mean the reduction in immuno-suppressants is working and allowing the body to fight the virus. The bad news is that the creatinine level jumped to 3.0 after being level the last two visits. That probably means that the virus is scarring the delicate tissue of the kidney and preventing it from doing its job. It could also mean rejection, but there are no other symptoms, such as high temperature, rapid weight gain, pain in the grafted kidney, nausea and vomiting.

So Friday I'll check into the outpatient clinic at 7 am for a long morning of infusions. Two hours of saline provide a cushion for the infusion of Cidofovir, which is an antiviral whose main use to treat the symptoms of cytomegalovirus infection of the eyes in patients with acquired immune deficiency syndrome (AIDS). CM Virus is in the same family as BK. By all accounts the drug is pretty nasty stuff. Besides virus fightin' Cidofovir also destroys kidneys  so the treatment is administered in low, carefully monitored dosages every two weeks. How many weeks? If I thought to ask I forgot the answer.

The Cidofovir will be followed up by an infusion of Gamma globulin which will shore up the stores of antibodies to help the body fight the virus. So after 5-6 hours of hanging around on an IV I'll either go to work or go home. (I'm hoping I feel up to going to work.) I go back to the clinic Tuesday to monitor the kidney function.  And find out the next plan of attack.

From all I've read on the Internet, the incidence of BK Virus is a growing problem among renal transplant recipients. No one seems to know why. It is suspected that the main culprit is the increased effectiveness of new, more powerful immuno-suppressant drugs, most notably tacrolimus (Prograf) and myfortic acid (Cell-Cept and Myfortic). But there is still much to be learned. There are no established 'by the book' treatments. Everything is a touch experimental. I mean my situation is that we're using a drug developed to treat a virus that occurs in patients with AIDS that is a nephrotoxin (translation: kidney-poison).

What continues to surprise me is that I had not heard of the virus before I had it. I wrote in earlier blogs some rationale about why my clinic doesn't test for BK Virus, but at this point I have a hard time accepting it. If there is a serum test that can be administered before damage is done to the kidney, it seems it should be done. Once again the emotional logic of the patient runs into the cold logic and established points of view of the medical profession.

BUT.... if I were a new transplant recipient knowing what I know now, I would be asking about BK from day one.

Readers with new transplants, you KNOW who YOU ARE!