Monday, February 9, 2009


The tricky part of treatment post-transplant is to set the doses of the anti-rejection meds. THis involves trial and error of dosing and measuring serum levels daily. Emily's surgical recovery has been very smooth. Getting the meds straightened out is taking some work. She is on a lot of meds that will be temporary, some she will be on for the rest of her life. It is very important that the level of the primary antirejection drugs stays at a certain level. Unfortunately, Tachro seems to make Emily's blood pressure go up and gives her headaches and nausea. So we are working at trying to keep food in her and keep her stomach settled while she is taking these drugs and yesterday her blood levels were way too high, making her feel sick.

The other challenge is that there is a nasty GI bug going through the hospital. The staff is being very careful, but by my estimate about half of the nurses were out sick last night. We are being very cautious, staying in our isolated room and not touching anything from the outside world.

The transplant team is meeting this morning. They will review her meds and discharge plan. We'll update the blog later. Rounds on Mondays are late so we won't hear until late morning.


Unknown said...

I can't believe its only been a little over a week and they are talking about discharge plans. That just shows you how the body has an incredible way to heal and how strong Emily is. It also teaches you that hospitals are the germiest (is that a real word, I don't think so)places and the doctors want to get you out of there as soon as they feel it is safe to do so. Boy can I appreciate that! I hope Emily has a good day today.


Agatha said...

One of our Angel Flight pilots recommended that I visit and read about Emily and her family. You are all amazing!! My husband is currently a patient at Mass. General waiting for a new heart. The past few days have been difficult as he developed an infection and had to be removed from the UNOS listing. Hopefully, a new PA will be inserted today and he will go back on the list. We live in upstate New York too (near Albany) and I'm having a hard time dealing with with distance between us. Reading your words about Emily post-transplant is more enlightening than any of the literature we have been assigned to read. You give me hope that my husband will soon enjoy a healthy life.

Hummels said...

Hang in there with adjusting to the meds, it must be so frustrating not to feel good after all you've been through, but I 'm confident it's going to get better. Do you guys have some card games? There are a couple Deb likes called Skip-Bo and Quiddler. I know it means going out to get, but may help pass the time. Keeping you in our prayers to get the medicine right.

Unknown said...

Deb and Bob I know this is hard to go through right now but it will be all worth it when you see Emily back in the saddle again. You are incrediblie parents,and I know where she gets her strength. It will get better in time.

m.wynn said...

ahhhhhh emily i hope you dont get the bug, whatever it is... :) i cant believe you might be getting out of there so soon!