Its July 13th, Terri’s Birthday…. yea!!! So we are taking it easy, she is sitting on the couch and doing her own thing, The rest of us are making her life a little easier.

We traveled to St. Louis on Wednesday, July 11th to see NP Stephanie, and get the IV-IG treatment. During the last “bug”, I dropped 10 lbs, so we are working on that now so I can gain back my strength. Remember before I got hit with the BK virus and the last bug I was walking 2 miles a day and gaining strength. During those 3+ weeks I was barely able to leave the bedroom and that set me back. It was almost like getting out of the hospital after the transplant. But I’m taking it slow, walking around our cul-de-sac with Caitie each day and building up strength.

I'm a Virus _Argh!

I’m a Virus -Argh!

It appears to Terri and me that the second bug might have been my body finally taking on the BK virus and has kicked its butt. I have had no pain since and am off the pain meds. I’s sure its still lurking around, because it never goes away, it just goes dormant until something else triggers an outbreak. It can go dormant forever, it was not fun. NP Stephanie and I looked over my lab reports… I read each one so I can ask questions and research what each means. Its my life and I take an active role in my care. Anyway, I noticed that my CMV lab came back positive. They have been checking it since I got my transplant. Why? I was CMV negative, but my donor was CMV positive. There is a 30% chance of transfer from donor to host. Its just barely detectible so we caught it early! And that is a very good thing.

CMV, or Cytomegalovirus (an overview from the CDC), is a group of viruses that is part of the herpesvirus family, that you probably have had. 50 – 85% of the population has it. You get sick, and then it goes dormant ( just like the BK virus). In immunosuppressed transplant patients it is quite serious. It can affect many organs of the body, but primarily the lungs and gut. If you get pneumonia from it, there is a high mortality rate, the gut not so much. I’m not worried. We caught it early, and the Med team is doing something about it now! For starters, we dropped my Prednisone to 30mg/day to let my donor’s immune system help fight it off. We have to be careful though, so my GVHD does not come raging back. But we have been decreasing the dosage of the Prednisone for a three weeks now and so far so good.

The IV-IG treatment I got on Wednesday should also help. It does many things and is a treatment they sometimes give to patients fighting CMV. So that works in my favor as well. I truly believe that going with the flow works. If I had my IV-IG treatment 6 weeks ago, when I “should” have, it would not have helped to fight this virus off. Now it has a chance to.

Lastly, on Friday I received my first IV dose of an anti-viral med called Ganiciclovir. We are really happy that we were able to get the IV form. They have a new pill form, but the co-pay alone is $1000!!! Getting it in IV treatment gets sent straight to insurance. So instead, my local doctor was able to give it to me in the treatment room, they like to give you a new drug in clinic or a hospital just in case of an allergic reaction… safe policy… I don’t mind. The kicker is that they are sending out a nurse to my house today to administer it. She will teach Terri and I how to infuse the drug through my “central line”, so we can do it ourselves. The nurse will come out for the first few days to “train” us.

I don’t know if they will send out the same nurse every time, but the first one’s name is Kathy, she seemed pleasant on the phone and is coming around 2pm today (its Saturday) to administer the second dose. I get a total of 21 doses over the next three weeks. The nurse will come back every 3 days to draw blood and send it to the hospital so they can check on the status of the virus and my kidney function. Of course there is always a side affect to drugs. This one damages the kidneys. I already have a problem with them, so monitoring is going to be very important. I’m drinking a lot of water, so that should help flush the toxins out of my kidneys.

From what I have read, and this is from research journals, the Ganiciclovir does not kill the virus, but controls it in order to give your immune system time to build up killer T-cells to build up antibodies to fight it off. If all goes well, the CMV virus will go dormant, and they will monitor it for another year or two to make sure it does not come back, or until I’m off immunpsuppressing drugs.

All of the past four weeks of infections and drama is normal for transplant patients. I just got lucky and had my first ~90 days free of “illnesses”. Most transplant patients get hit sooner and it is spread out more. I got hit late and one after another.

We are on track with the treatment plan, which is to slowly lower my Prednisone and then wean me off immunpsuppressing drugs while making sure my GVHD is under control and does not come back. That is going to take time. And there will be more rocks in the river (switching to the new metaphor) to navigate around. Bottom-line: I’m back to going with the flow.

Going with the flow.

Going with the flow.

Huli pau!

~ Mark and Terri


  1. Linda Senenfelder

    Happy Birthday Terri. Sounds like you guys have this under control and are on the road to recovery. We will keep the prayers coming and sending Pixie dust your way. Stay strong.

  2. Sunbeam Magic

    I like the sound of that “kicking some VK Virus butt” … btw HAPPY Birthday! Terri! enjoy your special day as you are so special!!! sounds like the family will make it magical for you!! Sending some ‘happy party pixie dust’ in a rainbow of colors just for you.

    Sorry you had some down time the last few weeks but things surely seems to be looking up and full of sunshine! Big HUGGS Fly High, seek peace and laugh daily!

  3. Especially To Linda, Monica and Sunbeam…. and those who read the comments. Sorry for the delay in responding. We are trying to balance life in our little world.

    Terri is now working full-time, I’m trying to work a couple of hours each day, which is not working out as I had hoped. 🙁 The kids have been a blessing, but are bored, not what they expected this summer vacation.

    Bottom line: I have little time to recover and heal. Going with the flow, just have to move so the resistance is in the whitewash behind me.