Well Folks today Sharon and I traveled to Prsby hospital in Pittsburgh and spent the day meeting with the members of the Transplant Team.
We met with the coordinator who gave us a brief overview as to how the process will be handled. Everyone we meet with today in addition to the cardiologist from Prsby and the ones from children will all meet next Monday afternoon and review my case! If I am put on the list then we just wait until we get the call...It is not going to be a speedy thing in fact it could take a year maybe two. I will need to be at the hospital within 3 hours of getting the call...time in hospital will be anywhere from 10 days to 2 weeks....6 weeks after discharge I can drive and about 2-3 months after surgery I can return to work...We talked about anti rejection medications and how they will replace most of what I take right now and that they will be with me the rest of my life....I will have to have weekly biopsies for the first month, bi weekly the second month and then every 3 weeks the third month and so on and so on...then after a year it is yearly...they do this to check for rejections and then they can play and adjust meds before anything major happens.
Next we met with the surgeon who briefed us on the procedure stating it could take anywhere from 4 to 6 hours to complete....that congenital heart patients are a little more difficult due to the plumbing from prior surgeries...However he felt that things should go smooth and the thing is to stay in contact with the adult cardiologist regarding any changes in my status...he said that sometime when folks are sick they don't notices the changes but that people around you usually do. He also agreed that it is better to be listed now rather then waiting because congenital patients tend to see their health decrease rapidly.
Next was a stress test...I lasted about 5 and a half minutes before symptoms of pain in my arms and back appeared...my O2 stats also fell to 85 which is not the best.
Next we met with the social services coordinator who took a social history...discussed that there is a class that I should plan on attending next week....talked about having support during the recovery period...we reviewed the meds I will need to take and what the cost maybe if insurance Does not cover them( although we think most if not all will be)...we talked about fundraising as there are going to be a lot of expenses.
Lunch was Next good thing cause I ate at 7 and was not allowed to eat until after the stress test.
Finally today we met with the Psychiatric nurse...for the most part she kinda went over that feelings of depression and anxiety are common...that the Lexapro I am taking is a good medication to be on...we talked about the fact that I have been preparing for this for a while and knew that someday this was going to be a fact of life...she feels I may have a more difficult time after the transplant as it will be the first time in my life that I have no real restrictions on my activities.....and she informed us that the anti rejection meds cause some very vivid and techno color dreams that are so real it is hard to tell them from reality!!! She warned not to argue with people if they tell me it was only a dream..if I make claims that they were there or did something.
So tomorrow is day 2...I have a couple of sonograms..some blood work and echo cardiogram...and a few other things....then we just wait to hear!! Although everyone today feels that there is not going to be any problems getting listed.
We will let folks know when we know and will also advise you of any fundraising as we may need your help.
Thanks for the support