Here is another chapter in the seemingly never-ending lung transplant evaluation that I began 12 months ago:
I am now considered a "pre-patient" and have been attending education seminars at the center with my husband. It is required that I take 12 hours of education a year. I have now completed 4. We have picked up some new information but much of it is general post transplant procedures which I am familiar with due to the kidney transplant. The interesting thing is the other people in the seminars. The people that are listed are all on oxygen, even at rest, which I am not as I only need it for exertion. Most are older than I am and look like they have a higher BMI than they should. In my mind, this confirms that I am currently not sick enough and that if my lungs do worsen I am in good physical condition to be listed. I also learned that the doctors meet as a group and discuss the patients.
I met with the surgeon, a session that I was very interested in, as he specializes in both the lungs and the esophagus. The damage to my esophagus from scleroderma is what eliminated me from another center and may from this one as well. I asked about a Nissen Fundoplication and he agreed with my Gi and scleroderma doctors that it would not work for me, that a Dor Fundoplication would be a better solution. With this procedure they leave a donut hole when wrapping the stomach and the esophagus so the food goes down. In one of the education seminars a person who is listed and waiting mentioned that he has bad reflux so this would be fixed after the lung transplant so I asked the surgeon about it and he said that is the way they usually do it. He also looked at my tan skin, told me I had to stay out of the sun and that "we look for compliance."
In a couple of weeks I meet with the lung transplant doctor and have a complete pulmonary function test. This will be the first PFT at this center so I do not know if it will differ from others that I have had a my doctor's and scleroderma center. I plan on asking him what the other doctors at the discussion have brought up about my case. I also have an appointment with the pulmonary hypertension specialist and may need another right heart catherization.
All in all I am doing well. I do need to use oxygen when walking or exerting myself, but not in slow movements or walking on flat surfaces for short distances. I need to remember to move slowly and do pursed lip breathing. The humidity at this time of the year makes breathing a little more difficult but I am able to do the things I enjoy with moderation. I have even been able to go in the ocean, and you know how much that means to me!