It has been 31 days since I was admitted to the hospital. I spent the first two nights and three days in the Cardiac ICU being monitored. This meant the doctors were looking at my pump controller every couple of hours to see if there were any more speed drops. At this point there have been no recurrences. The care team here made a decision that all things being equal it is in my best interest to remain hospitalized where I can be observed. If a recurrence occurred or a complete pump failure occurred the doctors could respond immediately. Better to happen here than in my car or on a golf course someplace.
Now that time has passed and I have not received a heart the prevailing thought is I need a heart now. To do this the team has decided to transfer me to Cedars Sinai in Los Angeles. This will likely take place in the next couple of weeks. The benefit of this is that 1) CS is the worlds largest transplant center by volume, doing 120 transplants last year compared to 14 at Abbot (1 every 3 days vs. 1 every month), and 2) CS is the world's leading Transplant Center for highly sensitized patients (high antibodies) which I have. The hope is that by sending me to LA I will get a heart quickly and get the best care in the world. I will come home once CS releases me and I pass my initial biopsies. Let's get a heart first:-)
There are some Veteran's benefits available for me, but there are also some financial challenges. I require caregiver support initially after transplant meaning those who come will need some place to stay. I learned today that this would include realistically $3000 per month for a short term housing rental, plus rental car, plus food and miscellaneous. There are some resources to assist me in finding a place to stay and I hope to get those in the next day or so.
If there is any good news in this it is that I am no longer treading water. We are dropping the petal not just to the floor, but through it. I will try to keep posting as things evolve, but I secretly hope the next post is after transplant:-) I have been enjoying the occasional cappuccino and have seen eagles from my room as I look out and they continue to give me hope.
