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.
To help you understand a little better - a little background. In order to have a heart transplant the pressures in the pulmonary artery have to be low - say closer to 25 - 35. Back in July my pulmonary pressure was above 90. My pressure is quite visible in my neck and the docs can see how high it is by my turning my head to the left and visually seeing the pressure or heartbeat in my neck. A little pressure on my abdomen and it picks up rapidly. The only way that we can help to control this is by removing more fluid through dialysis. Currently I go to dialysis 3x week and they remove between 2 and 4 kgs of fluid each time. In dialysis you have what is called a "dry weight" or the weight that is agreed to be the lowest they can get you down to. Each time I attend dialysis I am weighed before and after treatment. Originally when I started in July they set my target at 92 kgs after dialysis. This was hard to achieve because my blood pressure is very low. This is normal for final stage heart failure patients but the dialysis professionals don't always understand that. So they have been bringing my dry weight up - I am at 95 kgs now and my pulmonary pressures are remaining too high.
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.
Meanwhile, on the transplant side, I will complete various doctor visits and receive releases from the doctors and dentists. We will visit with the social worker and other members of the transplant team in coming months. It is expected that we will complete the evaluation process within the next several months. Once completed, our transplant coordinator will present our case to both the heart and kidney transplant teams and they will decide if I am a candidate for the transplant. Even if I do get on the list there is no guarantee that I will receive a transplant.
