Tuesday, August 2, 2011

Day 2 of Transplant Evaluation

Even though I had less testing today, I was more tired at the end of my appointments than I was at the end of the day yesterday. We were actually done at about 2:45 but I didn't even last the 20 minute drive home, I was asleep practically before my mom pulled out of the parking lot.

The day started with an Esophogram. I have never had this test before and didn't know what to expect. I changed into a gown, (side note: The gowns here are so comfy. They are a jersey material and remind me of a night gown. Much better than the normal hideous, stiff gowns I'm used to! I have to take pleasure in the small things : )) then I got onto a table and was told to drink the barium/oral contrast. I was worried about the taste but I only gagged once! It wasn't too bad, chalky and bland. The technician compared it to Mylanta. They had me gulp it in various positions on the table; standing up, laying on my back, my side and my stomach as they took several different pictures of my esophagus and how it was working.

Even though the actual test wasn't too difficult, I had a bad headache when we finished. I was required to fast for 10 hours prior to the test so I wasn't sure if the headache was due to lack of food or from the contrast that I had to drink for the esophogram.

After we had a bite to eat, we were scheduled to meet one of the transplant coordinators for a transplant education lecture. There was another patient there too so the information was very general. To be honest, because we've gone through this before and done so much research on our own, there wasn't a whole lot of information that was new.

The lecture lasted about an hour and covered things like:
*how to gauge readiness for transplant (the "transplant window" is when you are sick enough to need a transplant but well enough to survive the surgery and recovery),
*how one actually gets listed,
*average wait times for lungs (2 days to 2 years depending on your "score"),
* UNOS,
*lung allocation score (the higher your score, the sooner you get lungs),
*the actual procedure (6-12 hours),
*the ICU after the surgery,
*the risks of organ rejection and infection due to being immunosuppressed (there is a fine balance between being immunosuppressed enough to prevent rejection but not enough to risk too much infection),
and
*the recovery process (1-3 months of pulmonary rehab here at Stanford after discharge).
It was a lot of information and I was still struggling with a headache so my energy level was pretty low by the end of the meeting.

Like I said, I fell asleep in the car and took two Advil when we got to the hotel and slept till dinner. I feel recharged tonight and ready for another day tomorrow. I will meet the whole transplant team and look forward to that. I have been so impressed with everybody I've met so far and feel confident that I will continue to connect well with the team at clinic tomorrow.

Thank you again for your heartfelt messages, comments and prayers. They mean more to me than you can know!

- Posted using BlogPress from my iPad

5 comments:

Anonymous said...

Sending so much love and strength to you, Shar. You are incredible. -Stephanie

Cormorant said...

It's amazing how strong and prepared you already are during this whole process. Keep it up!

Kat Quinn East said...

Thinking about you and sending all my love and prayers sweet friend! xoxo

Somer Love said...

Love you SO SO SO much! So glad we were able to catch up last night! Xo infinity

Michelle S. said...

Alicia, Natalie and I are thinking of you every day. Thank you for the update! We love your posts, and are glad things are going well. We love you so so much!!