Monday, August 3, 2009

Monday clinic report

After having my blood drawn today, I went across the street to visit PJ at Brigham and Women's Hospital, where she is having her second transplant. I met her through her blog, on which she is, with eloquence and humor, telling her story. We discovered that we have some amazing similarities and have, with a group of other friends from the blogosphere, been supporting each other ever since.

It was good to see her and meet her husband and two sons. She seems comfortably situated on 6A, my home-away-from-home for much of this past winter. Her room is next to my old one. I can clearly remember lying in bed staring out at the pod, watching patients walk around and wondering when I could do that again. It's been a long haul since I took my first faltering steps with a walker, got half-way down the pod and had to pause to catch my breath before moving with difficulty to the end of the pod, and then turning around and looking longingly back at my room and my bed, which seemed pretty far away.

Naturally you go back to a place like that with mixed emotions.

I was glad to check in with PJ's nurse today, Christina, who happened to be my nurse on one of my darkest days when they weren't sure I would make it. I appreciated that I was standing up talking to her instead of lying in bed. None of my other regular nurses were there, but I was happy to see other old friends, including nutritionist Paula, who helped find me things to eat when I could barely tolerate anything, and personal care assistant Donna, who buzzed my hair for me when it was falling out in tufts.

After that, I returned to the clinic and met with Melissa and Dr. Alyea. My counts were: platelets, 10 (at least not in single digits); hematocrit, 23; and white, 4.9. This is lower than last week, but they said it was fine. Dr. Alyea lowered my Prograf from .5 mg twice a day to the same dose once a day. He said he hoped that would help my body stop chewing up platelets and red blood cells. Next, I got a bag of platelets and two bags of blood, almost closing the place down..again.

Oh, by the way, Melissa also said not to worry about the two spots on more forehead. They are already fading and were probably a reaction to bug bites, as my rational mind tried to tell me. 


Ann said...

Yay for less prograf!!!

Trish said...

it nice to not officially be a patient in the hospital you are visiting! Not nice to have to visit someone on the inside, but great you're not the one!

isn't it amazing how our minds start going in circles and driving us slowly insane about two little dots?

they could be nothing, but they COULD be a dozen other things. The more time we have to think about it and the more we know about our bodies, the worse the scenarios can get.

twice now we've freaked out when I've found a new spot on my body that "wasn't there yesterday!". both times we fell victim to a slight drop of chocolate or Worcestershire sauce. but for a melanoma patient, it can be freaky to find a dark spot that pops up quickly.

breathe, relax, let those blood products take effect and help you and yippie on less prograf!

Nelle said...

Sounds like a good report to me. It's nice sometimes to look at how far you have come...not how far you have yet to go. You are making progress and I cannot wait until you can visit the hospital less and less.

Susan C said...

Life is full of such unexpected surprises. Who knew that you would be visiting PJ near the same room where she visited you.