Sunday, July 25, 2010

A Sentimental Shot

We finally got new phones today and I now have a way to get images off my phone and into circulation. Which not only means we got 'smart' phones, but plonked down the bucks for data connection... 

So, this is a picture of my fistula in action for the last time during my last dialysis treatment the day before my transplant. It was taken around 7 am on a Monday morning. We had received the call about 4 hours earlier and had made the decision and wandered around the hospital in the wee hours before we finally found the outpatient lab for the final blood draws to confirm the match. 

I would have used the photo on the blog, if it had been available at the time. When I posted about my first dialysis treatments I had to google-search images to use as illustrations.

So, this is a sentimental photo and a sentimental post.

Things seem OK on the BKV front. Blood pressure seems to be more controlled now that the virus count is not so high. I'll get my new lower dose myfortic tabs Monday or Tuesday which will give me about a week at the full lower immuno-suppressant dosage before the next blood draw.

Wednesday, July 21, 2010

BK Virus: 7.21

And now for this week's BK Virus Update.

Started Monday morning with a trip to Baylor for a blood draw to check the viral cell count. Which is to say it started with aggravation. Checking in for the lab work (just a needle stick and 1 vial of blood) took an hour and a half. The check in was the same as checking in to the hospital, only just one woman seemed to be working. Maybe others were on vacation. Sign countless consent forms, get a bracelet, the whole nine yards. It wasn't like I hadn't this just two weeks ago and had a biopsy done two weeks before that all over the same diagnosis...

The good news is that I am now checked in for a series of tests (I guess that makes me a serial patient.) When I check in at the desk, they should give me a copy of my orders and a bracelet right there at the gitgo and off I go dancing down the hall to the lab. We'll see if that works.

So today I went to the Transplant Clinic for the rest of the story.

The best news was that the creatinine did not go up. It's been stable the last three visits at 2.7, 2.6 and 2.7. There was little expectation that it would go down, there was fear that it would go up. It stayed flat, so that means we can concentrate on the virus.

The viral cell count went up. From the initial count of 497,000 copies of the cell, the first reduction of immuno-suppressants combined with a dose of ciproflaxcin dropped the count to 73,000. This week, two weeks after the cipro treatment stopped, the count has risen up to 156,000. The suspicion is that the cipro reduced the count to below the 'new' normal level with just reduced immuno-suppressants. What we don't know is what the new baseline count should be. We'll know a little more about that next time.

So, what's the next step?

There's a little more room to play with the immuno-suppressants, so that's what Dr. Melton wants to do next. We're cutting the Prograf by 25% and cutting the Myfortic another 50%. If the kidney had been a 6 antigen match, there would have been even more room to play, but it's been 21 months since the transplant and no sign of any rejection, so he feels comfortable with the reduction.

And we check everything again in two weeks. Hopefully the creatine will remain stable and the BK cell counts will start going down. If not, he will probably begin treatment with cidofovir. Cidofovir is an antiviral agent developed as treatment for AIDS. Its drawback is its nephrotoxicity. So it is carefully administered in low-dosage to renal transplant patients fighting the BKV. It is infused via IV over several hours in a hospital on an out-patient basis. Once a week for several weeks.

So that's the news for today. Time to stop here, get dressed and get to work!

Added later that afternoon.

Janet just called from the clinic. My prograf level was up today, so they're cutting my dosage by 50% instead of 25%. All these numbers and levels and dosages. Just watching the gauges and making the adjustments to keep everything in balance!

Wednesday, July 14, 2010

BK Status: Holding Steady

Just back from the clinic. This morning's lab results are very consistent with the results a couple of days ago. Creatinine is 2.6 today versus 2.7. All other numbers are very consistent. Red blood count and hemoglobin are still just a hair low, just as they have been for the last month.

The action plan for now is just to hold steady. The thinking is that if the creatinine level holds, we can concentrate on controlling the virus.

So I'll continue to stay hydrated and keep my fingers crossed and we'll do it all over again next week. Blood draw next Monday at Baylor to check the serum BKV count and follow up appointment at the clinic next Wednesday to check results.

Until then, have a great week!

Back from Vacation, Time to Recheck the Virus!

So we made it back from vacation. Successfully, albeit in retreat.

Susan's been fighting toothaches for longer than she likes to remember and it really flared hours before we were to hit the road. So of course we went anyway. (She had seen the dentist and had an appointment with an endodontist for when we returned, it's not like the problem had been ignored.) To make a long story short, she obtained antibiotics and pain meds which helped, but instead of going on to the Great Salt Lake, we made the retreat back to Big D, where she immediately had two root canals.

And while she was having her morning in the dental chair, I wound my way through the maze that is Baylor Hospital, found the outpatient lab where they drew blood samples to check the serum BK Virus cell count. Yesterday I went to Dallas Transplant for the usual drill: labs and a check-up.

Good news bad news. The Ciproflaxcin really knocked down the serum cell count of the virus (That is the cell count in the blood). From close to 500,000 to 73,000. Normally the follow up here would be to wait and see if the reduced immuno levels would allow the body's antibodies to fight the virus before moving onto anti-viral infusion. Except that my creatinine took a stiff increase, from 2.0 to 2.7 (normal is under 1.1.) OUCH.

Information note:  Creatinine is waste product from the muscles that the kidney clears from the blood. It is quick and easy to measure with a blood sample, so it is the most common measure of kidney function. It is not totally accurate as the appropriate creatinine level varies according to mass, body type and fat, age and even race. When put through a complex formula that's over my head, it becomes the Glomular Filtration Rate which is a much more accurate gauge of kidney function. But because of the ease and low cost of the test, measuring creatinine is the most common measure. And mine, which was high, just went higher.

So, what's next? I go in tomorrow for a recheck. Maybe I was dehydrated, maybe this, maybe that. A number of alternatives were floated that would have produced the elevated creatinine. They sounded like pie-in-the-sky to me.

Bottom line: I go in for a recheck. If it's down, we'll go into a 'wait-and-see' mode or go to the anti-viral. If it's up, it's back to the hospital for another biopsy. What would the biopsy show? Possible rejection due to the reduction of immuno suppressants. Possibly the Cipro knocked down the BKV in the blood, but the virus count is still high in the kidney. And possibly damage to the kidney by the BKV.

And yes, it is depressing to be back in this murky medical malaise. And then I remember. The last four years of dialysis and transplant have been such a blessing. Stoppage. Extra time.

Stay tuned!