Tuesday, December 2, 2008

Stupid virus

Last Monday I wrote that, due to impressive counts, I was “promoted” to every other week clinic visits instead of every week. I had a little separation anxiety, but it didn’t last long, since I was quickly “demoted” to every week.

That’s because once again I tested positive for CMV, a virus that often pops up after transplant when your immune system is weak. The virus can lower your counts, as can Valcyte, the drug given to fight the virus. I had already been through this in October, when I had to take Valcyte for so long that my counts were in the basement.

So I went into Boston yesterday for a 1 p.m. appointment to get my counts and the viral level checked, not really anticipating too much change since it was only a week after my previous visit.

My white count (3.1) and platelets (112) had only dropped a little, but my hematocrit was 23.8 (and hemoglobin 8.5), meaning it was transfusion time. A few days earlier I had huffed and puffed going up the stairs, making me wonder if my red count was dropping. But I’ve been walking without any fatigue, although I did feel exhausted after Thanksgiving dinner.

In any case, due to a backlog of patient visits after the missed day of appointments on Thanksgiving, the blood wouldn’t be ready until about 7 p.m. This meant arranging to stay with Diane in nearby Newton and making sure that, back home, Katie and the dog had a place to stay. Everything quickly fell into place, thanks to my wonderful support network.

The whole afternoon was ahead of me, and although I had a book, I couldn’t see spending any more time in the waiting room. I had envisioned a quick clinic visit followed by a short (masked) trip to the Chestnut Hill Mall to return a shirt. I figured I might as well go to the mall while I waited for my blood. On the way to the mall I got a coffee and a scone (I was pretty tired but not too tired to proceed), and, when I arrived at the mall with some coffee still left, I didn’t want to waste it.

So I put on my mask and took the coffee cup into the mall, pausing now and then to take a quick sip underneath the mask. Still wearing my white patient ID bracelet, I went into JJill to make the exchange and try on something else. I had to wonder how I looked: A masked woman with a hospital ID bracelet, holding a shopping bag and maneuvering a coffee cup.

After a quick stop at Diane’s to charge my cell phone, I went back to the clinic for the transfusion, starting a little before 7. Diane’s husband, David, dropped her off at the clinic around 9, and she drove me back to her house for tea and cookies and a good night’s sleep.

I’ll be back at the clinic next Monday. Woohoo.


Ann said...

You're not alone on the Valcyte count. I've been taking it for the last month and it's been lowering my counts as well. Like we don't have enough to worry about. Hang in there. You've defeated CMV once and you'll do it again.

Anonymous said...

How would you feel if I had a virus and you found about it on my blog?

If you HAD called and told me about it, I would have told you not to worry because you'll be OK, as usual.

So I assume since you didn't think it warranted a phone call, you ALREADY think it's no big deal without having anyone convince you that's the case?

Ronni Gordon said...

Geez Louise.

(This is for Ben, in case he checks back in again and who I will call before he reads this anyway.) As Ann said, a lot of people deal with this and I've dealt with it before. It warrants writing about because it's so frustrating, but it doesn't really warrant phone calls to get people worried.

Anonymous said...

Ben is such a good son. Loved his comment.

Despite my initial resistance to your blog, I love learning in real time of the daily ups and downs. Of course, I prefer the ups. Glad the transfusion got done without too much delay.

Anonymous said...


But I am happy you actually went to the mall. I think it is often difficult for people like us who want to be the best patients possible to sometimes venture out. The Hutch really encouraged this (obviously to be done with caution and safety). I think this is a big milestone. I have been to the Chestnut Hill Mall and I bet everyone was so wrapped up in their holiday shopping they did not even notice the mask and coffee!

Good luck with the transfusions.

Susan C said...

That's a wise offspring you have there, Ronni.

But I'll join you in the name calling - STUPID virus.

Nelle said...

I am curious about this. I always tested CMV negative and all blood I was given was also CMV negative. When you get a transplant do you get CMV because of your weakened immune system or do you get it from the donor? This may sound crazy but I always loved getting blood because I felt so much better afterwards. My son is protective of me as well and I think it's a great tribute to their love for us. It's not easy to have a sick Mom, no matter how old you are. Sure hope the CMV vanishes soon.

Ronni Gordon said...

Nelle: You get CMV due to a weakened immune system. Most people have it anyway in a dormant state, then it gets activated in some, but obviously not all, people when their immune system is weakened.