Almost a month

Here I sit, almost a month already, patiently waiting for my perfect donor. The first 2 weeks were a little tumultuous and left me quite a bit worse than I was on admission. There are a couple of powerful IV medications they want to use on a patient pre-transplant that ideally will help their heart function until they get transplanted. They affectionally call them ‘rocket fuel’. Well the rocket fuel did not work (I call it ‘failure to ignite’) and made me much sicker. A few other issues have occurred that have taken a while to recover from but now I’m finally starting to feel better. As far as I know I have not received any other offers but I may have been put on hold until they resolved a few things. Hopefully it’s smooth sailing from here.

If I have to wait anywhere I’m so glad I’m at the Mayo Clinic and with this team. The staff and doctors are exceptional and go out of their way to make sure us long term patients are happy. I was moved to a room with a huge glass wall overlooking the intracoastal and the Atlantic in the distance and see the sun rise every morning. (Not so much with all this rain). We are strongly encouraged to exercise as much as possible to keep our muscles strong before surgery and to wear our regular clothes. You can’t tell us from the visitors, except for the IV poles and monitors. LOL. We even wear a GPS tracking bracelet so they know where we are at all times. We’re only allowed to stay on this floor except when we get ‘sunshine privileges’ and are escorted downstairs and outside with a 5 person escort for about half an hour! There are 4 of us here now who are pre-transplant and we get together to play cards once in a while. It helps to pass the time.

They have professional musicians who will come and play a keyboard or viola in your room if you wish, canine companions who will come with their dog and visit if you wish and professional artists who will come and draw or paint for you. The food is done as room service and is available whenever you call and a huge fluffy robe is waiting in everybody’s room which we apparently get to keep. My transplant team calls it the Mayo resort but I’m not fooled. I’d rather be on a cruise ship!!

I’ve been so fortunate to have many friends and family come for a visit. Those visits keep me going and I am so appreciative of the time and effort it takes to drive up here. So….I’m patiently waiting. There was a girl who waited 4 months and got her heart about a week after I got here. She got discharged today. Another lady who waited 3 months got her heart and went home yesterday. It will come for me eventually.