Last we finally got to meet the transplant coordinator (at Oregon Heath & Science University - OHSU) in person and we both feel reassured that the official evaluation process is occurring. Here's where we are now. Each time we come in we are seen by one of the three lead docs on the heart transplant team. This time we saw Dr. Mudd. He's the "cup is half empty doc" but of the three we feel that he is doing the best to manage our expectations carefully. Overall, I am much stronger now due to cardiac rehab and my mental health is greatly improved also. While my heart and kidneys will not recover, I am doing better and getting stronger. Dr. Mudd is considering switching out my pacemaker for a biventricular defibrillator to help better regulate my heartbeat and make my heart stronger.
Unless we can get the pulmonary pressure down and my dry weight closer to 90 kgs, I won't be considered for a transplant. Its just not possible to match a healthy heart of similar weight and size when my pressure is running so high. So I may be starting start dialysis 4x a week in the hopes of getting more fluid off. The side effects are unbearable cramping (the kind where my hands contort in cramps and my legs cramp all night long) and exhaustion. I've had another catheter put in my abdomen in preparation for home peritoneal dialysis (PD) as opposed to the clinic hemodialysis which is what I am doing now. Once I am on PD I will do it 7 days a week at home. It will be less stressful on me physically and I can take the set up with me if we travel. Both my wife and I have to go through intensive training before that can start. We expect the training to be completed and hopefully I can begin the home dialysis in March.