Tuesday Morning Update

Yesterday's hospital visit was interesting. For about a week and a half, I haven't been feeling very well. I've been nauseaus, headachey and have had less energy than I had before. So on Friday I called the doc's office and moved my appointment up from Wednesday to Monday (yesterday). My first stop was the Treatment Center where they draw blood for the CBC. When the nurse put the needle in, I fainted. After all I've been through, after gazillions of needles...I don't understand it. When I came to, he took my blood and I went to see my doctor.

Dr. Schuster didn't seem overly concerned about my having passed out. And he said that the nausea and other symptoms are a "classic GVH flare-up." Since I discontinuted the Tacrolimus two weeks ago, this is not unexpected. Unfortunately, he put me back on 20mg/day of Prednisone. He believes that it should be short term. I took my first one this morning. He also told me to discontinue another of my meds, the Actigall. Slowly, slowly the list of my meds is getting shorter.

My CBC results were mixed -- WBC 3.2, HGB 8.3, PLT 120. Dr. Schuster said I should come in next week instead of the usual two weeks because I'd probably need blood. I haven't needed a transfusion since the day of my last hospital discharge in April so this has been quite a long stretch!

After seeing the doctor, back to the Treatment Center I go for my Benadryl/Pentamidine. They gave me the Benadryl IV and then, about 10 minutes into the Pentamidine I fainted again. My BP dropped to 90/50. They paged Dr. Schuster and he told them to give me fluids, finish the Pentamidine and then to give me a unit of blood. So it turned out to be a whole day affair. We (Mom & I) were there from 11 to 6.

So far, so good. It's Tuesday morning and I haven't fainted again so hopefully it was from the anemia. Dr. Schuster said I should keep my appointment for next Tuesday anyway. I'll update my blog after that visit.

Thank you for checking in and for all your thoughts and prayers. Believe in miracles!!

Tuesday's appointment

I had my appointment at the hospital today. Thank God (B"H) my counts were very good. WBC 4.5, HGB 10.0, PLT 118. These are very good numbers, especially my HGB which is finally going up on its own, without transfusions. I also had my 50 mg. of Benadryl and the Pentamidine and spent most of this day napping.

As of today, I am no longer taking Prograf (the immuno-suppresant) and we've also discontinued the Entocort (protects the lower GI tract). More major milestones.

My eyes are still bothering me but there may be some small improvement. I've decided to try the steroid eyedrops again and, although I don't really feel much of a difference, more than one person has mentioned that my eyes are looking better. So, I'm gong to continue using them for a while and see how it goes.

I've been feeling very well, thank God. I've been doing a lot of bicycle riding and walking and spending very little time sitting around, watching TV, napping, etc. (except for today).

Thank you for checking in and for your continued prayers and good wishes. Believe in Miracles!