We were thrown a curve ball yesterday.
The infectious disease doctor came in around 2:30pm and told us that the Mycobacterium Abscessus lung infection needs to be treated before they can list Anya for a transplant. She said that M. Abscessus is a pretty nasty bug and needs to be treated for at least 6-12 months prior to transplant. Therein lies the problem.
I don’t think this decision is final yet. We have not heard from the pulmonary doctors. One of them seems to think that the mycobacterium will go away with the old lungs and the other one seems to think that it will be a problem going into transplant. Same with our infectious disease doctors at Fairfax. One told us that no center will transplant Anya with this infection and the other said that it wouldn’t be a problem.
I did a little digging myself and from what I’ve read, M. Abscessus is not necessarily a contradiction to lung transplantation, however additional complications may arise post-transplant.
- Lung transplant outcomes in cystic fibrosis patients with pre-operative Mycobacterium abscessus respiratory infections.
- Mycobacterium Abscessus in Lung Transplantation: Proceed with Caution
- Lung transplantation in patients with cystic fibrosis and Mycobacterium abscessus infection
No matter how we look at it, a second transplant is going to be high risk. With this lung infection, the post-transplant risk will be even greater. However, we already knew this before coming here.
Yesterday was not a great day, but we did get some good news in between all of the bad. The liver doctor told us that Anya had “spotty cirrhosis”, but would NOT need a liver transplant, which was what held us up at the other centers. He wanted us to focus on the lungs and not get sidetracked with anything else because the lungs were the primary concern. Definitely good news, but now we have this lung infection to deal with. We should know more within the next couple of days…
Anya just had a bronchoscopy this morning at 10am. I had a chance to talk to the pulmonary doctor after the procedure. He said that the review team did not discuss Anya’s case yesterday because there were still a lot of tests pending. They will discuss her case next Tuesday. He said the plan was to get her discharged over the next few days. Most likely a decision will not be made until after the results of this morning’s procedure come out, which will take about 6 weeks…Ughh…
Where will we go after we get discharged? No clue. Do we stay here or do we go back home??? I think the plan is to stick around here until they make a decision next Tuesday. If they say “no” to the transplant, which is a possibility, then we will head back home. If they say “wait 6 weeks”, then we may stick around. I wish I had more answers than questions…