Transplant Update #1 (4-11-18)

*Originally posted April 11, 2018 on fundraising website*

The support from everyone has been incredible. I felt a lot of stress and pressure when I first announced the fundraising, but people have been so kind and generous that it has made this part of the process easier.

This week, I’ve had a cardiac catheterization, had my sinuses checked out at the ENT, and went to the required visit to the psychiatrist. A doctor said to me after the cardiac cath, “you have gorgeous coronary vessels.” I hope my actual heart is just as robust because lung disease can take a toll on the heart. The ENT said I may need sinus surgery prior to the transplant. When you have cystic fibrosis, the lungs aren’t the only place filling with mucus, the sinuses are as well, and that can drip down into your lungs. Having the surgery and disrupting that spreads bacteria in the body, so the ENT said she would have the transplant team decide if I needed surgery before or after, so it’s not a matter of if, but when.

I was disappointed to hear that news because it could mean a delay and it’s more visits to the hospital. But, having it done before would give the new lungs the best chance, so I’ll do whatever it takes. The psychiatrist visit was pleasant. I told her to deal with the stress of the process that I do a lot of venting and make sure I get my feelings and thoughts out because it makes me feel better, and she said “you know how it works.” Can’t keep things bottled up or you’ll never release your stress. At the end she said “you’re one of the guys that makes it through this.”

I have a colonoscopy scheduled for Patriots Day (Marathon Monday), so I’ll be doing my own marathon back and forth to the bathroom. I hope my colon will be as gorgeous as my arteries.

Everyone has been asking - when is your surgery? I don’t know. It seems like every time I go to MGH it leads to more appointments. Basically, you want to take care of any problems before transplant to give it the best chance.
When I am listed eventually, I could be called at any time, and I would have to be at Mass General within 3 hours for the operation. The average wait time on the list for lungs at MGH in 2018 was 29 days, last I heard. So, that’s the reason you have to prepare in advance with fundraising and everything else because you’re on-call once you’re on the list.

Thank you all for helping me and thinking of me.