Day 6 – Wednesday
Anya spent most of the day recovering from the bronchoscopy. She mentioned that the left side of her chest hurt a little bit. She’s had a ton of these bronchoscopies done before, so this was abnormal for her. The only thing that I noticed was that she sounded a little stuffy.
As Anya sat in the room, recovering from the bronch, two doctors came in. The first was one of the pulmonary doctors. He told us that this was a serious lung infection and that it needed to be treated for at least 6-12 months before they would do anything. He was in and out within five minutes. We didn’t get a chance to ask any questions.
The second doctor that came in was the infectious disease doctor. It was the first time that we had met him. He basically just reiterated what the pulmonary doctor said –12 months of antibiotic treatments, then we think about a listing. I asked him a few questions, but he was pretty set on his decision.
We both just kinda sat there in disbelief because the major hurdle with the other centers was Anya’s liver and that was given the green light by the liver doctor here, so we were under the assumption that we were clear for takeoff. Sigh.
As the day went on, I noticed that Anya’s breathing was getting a little more labored. Going to the bathroom, brushing her teeth, etc., she was noticeably more winded.
Day 7 – Thursday
Thursday was somewhat of a long day. The docs ordered blood and urine cultures in the morning. Then, Anya finally did the modified barium swallow test, which was a lot easier than the regular, cement barium swallow test. The “modified” part allowed her to eat barium filled pudding and other foods, which made it easier to go down.
Around 4pm, the respiratory therapist asked us if we wanted to go to the weekly transplant support group meeting. Anya didn’t want to go, but both of us dragged her, with the help of a wheelchair and some oxygen, to the meeting. There were about 30-40 of us, some pre-transplant, some post transplant, and just as many caregivers. We sat in one big circle and went around the room telling our stories.
I can see why Anya didn’t want to go to the meeting now. While it was great to hear so many of these post-transplant success stories, it just wasn’t what we needed at the moment. Here we were fighting, hoping just to get listed and then, we had all of these post-transplant patients talking about great it felt to take their first deep breath. We left before the meeting ended.
By night time, I noticed that Anya’s face and neck looked a little swollen. She didn’t feel any other discomfort, except for some pain in her chest from the bronchoscopy, which was pretty normal. We decided to wait until the morning to alert the nurses.
Day 8 – Friday
Anya barely slept on Thursday night. She was in a lot of pain. We bumped her oxygen to 8 liters and her oxygen concentration levels were hovering around the 93-95 mark. The day before, she was on 4-5 liters and saturating at 98-100.
By morning, her face and neck were…how do you say it…like a blowfish. Not normal. I called for a nurse to check on her. Three hours later, the nurse practitioner (NP) came in and finally ordered an X-ray. The X-ray revealed excess air around her chest and lungs. The NP said that the biopsy from bronchoscopy might’ve punctured a small hole in her lungs, thus causing air to leak into her body and up into her neck/face. They said that it was nothing to worry about because the air would eventually get absorbed into the body or find its way out.
Around noon, the pulmonary doctor came and went. I stopped him in the hall to ask a few questions, since he’s been so elusive. The conversation didn’t go too well. He was unsympathetic and downright rude. I’m just so glad that he’s not the only one making decisions on Anya’s life. I don’t wish bad upon anyone, but I’d like to see this guy in Anya’s shoes for one day.
The social worker came in next. She just went over all of the paper work and things we should expect right before transplant and the weeks after transplant. She didn’t know about all of the conversations that we’ve had with some of the doctors, so she was gearing up for the transplant, as if it were going to happen next week. I told her what some of the doctors said and she told us to not to get caught up in the opinions of a few doctors because the decision will be made amongst a big group of doctors, not just one or two.
The infectious disease doctor was next to visit. He came in and reiterated the long treatment time for the lung infection. He said 6-12 months this time, instead of the firm “12 months” he said on Wednesday. He did say that Anya’s strain of M. Abscessus was sensitive to a lot of drugs, so the antibiotic treatment was relatively straight forward.
I told him about our concern with the length of time for the treatment. He proceeded to tell us about this recent study involving double lung transplantation with M. Abscessus. I asked him if it was the North Carolina study with 13 patients and he said, “yes”. This “study” was the same “study” that I google’d a few days earlier:
- Lung transplant outcomes in cystic fibrosis patients with pre-operative Mycobacterium abscessus respiratory infections.
In the study of 13 patients, the outcome for lung transplantation in patients with m. abscessus was good, but all of the patients were treated for a minimum of 6-24 months pre-transplant. I asked him if it mattered whether Anya had an active infection or just a colonized infection and I could see that his head just kinda spun a little bit.
Hopefully, he’s going to do a little more research before making a final decision on Tuesday. The problem is that there is not a lot of data out there right now.
Anyways, we had a very productive conversation with the infectious disease doctor. At the end of the conversation, he said that he’d be willing to compromise and adjust the length of time for the treatment based on how Anya’s health progresses. At the end of the day, we both want for Anya to 1) get a transplant in the safest way possible, and 2) be able to recover from the transplant, infection free, and without any unnecessary complications.
After our productive conversation with the infectious disease doctor, the transplant surgeon’s assistant came in and talked to us. One of his main concerns was Anya’s size and weight. Finding a new set of lungs that will fit Anya will be the main challenge from a surgical standpoint. That was their main concern. Another concern was the fact that this was a second transplant and it was going to be a lot more risky, in terms of bleeding and removing the old lungs. The good news is that they’ve faced these challenges before.
Around 5pm, the pulmonary doctor ordered a chest tube to help release some the excess air in Anya’s chest. The procedure took about an hour. After the procedure, Anya said that she was breathing much better. Her face and neck were still swollen, but they said that it would go away in a few days.
It’s been a long few days.