Houston Methodist – Day 6, 7, & 8: Uncertainty

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.

Disappointing.

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:

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.

Pluer-Evac - To help remove excess air from the chest cavity

Pluer-Evac – To help remove excess air from the chest cavity

Houston Methodist – Day 5: Curve Ball

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.

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…

CCU

Sunday morning (August 17, 2014), Anya woke up and had a really tough time catching her breath.  Literally going from the bathroom and back, she just couldn’t seem to “recover” from it.  She wasn’t sure what to do; neither was I, so we called her sister, and we all agreed that she should go to the ER at Fairfax Inova.

We weren’t sure if we had enough portable oxygen tanks or the capacity (10 liters per minute) to get her to the hospital, so we called the Fairfax County non-emergency number to send an ambulance.  The ambulance came within 10 minutes, asked a bunch of questions, and then whisked Anya away to the ER.

I followed about 10 minutes later with a bag of clothes and her ipad.  We’ve done this before, but never in an ambulance.  In the ER, they pumped her with some albuterol nebulizers to try to open up her airways and help her breathe a little easier.  Anya was noticeably gasping for air.  I was pretty worried.

The nebulizers didn’t seem to work, so the ER doctor decided to try something called Heliox, which is a Helium/Oxygen 60%/40% mixture used to help remove CO2 from the lungs while also providing oxygen.  After 30 minutes on the Heliox, Anya was noticeably better.  She wasn’t struggling as much to breathe, but still not quite normal yet.

By 6:30pm, she was stable enough that they decided to move her out of ER and into the Critical Care Unit (CCU, aka ICU).  In the CCU, they immediately started her on the usual set of antibiotics (meropenem, zyvox, & bactrim).  The struggle to breathe, in addition to all of the meds that they put her on really took its toll on her, as she slept all throughout the night and pretty much all of Monday.

By Tuesday morning, Anya was still groggy, but awake and alert.  I think she totally lost an entire day in her mind because she was asking me questions about the day before, thinking that it was still Monday.  I don’t blame her because she was in pretty bad shape on Sunday and Monday.  I can’t imagine the amount of energy that she expended gasping for air.  Her resting heartbeat for about 6-8 hours was 130, which is a slow jog for most people.

So, what we’ve learned from the doctors in the past few days is that Anya’s cultures, from her last hospital stay, grew out a mycobacterium called M. Abscessus.  It’s a pretty nasty bug, but they think it’s treatable with a cocktail of antibiotics, which they’ve already started her on.  They haven’t been able to get another sputum sample, so they’re not sure if there’s something new growing or if it’s the same bug that caused her shortness of breath on Sunday.

Right now, the doctors are pretty concerned about Anya’s breathing.  She’s on 35 liters of oxygen.  Too much to give her a much needed bronchoscopy to clear out the mucus in her lungs.  If they do a bronchoscopy, they will need to intubate her and put her on a ventilator which will bring on a whole new set of risks.  Without the bronchoscopy, the mucus will continue to be a harbor for unwanted bacteria and fungus.  So, it seems as though we’re in a “hurry up and wait” mode.

The docs are hoping that Anya can clear the mucus up herself through coughing and chest respiratory treatment.  They’re also waiting to see if the anti-biotics are helping or not.  So far, she’s better than she was last Sunday afternoon, but still not as good as she was before she got sick again.


 

On the transplant front, we’ve heard back from all three centers.  Fairfax Inova was the first the reject us.  They’ve only performed one CF retransplant and the outcome was not good, so they are reluctant to do another one at this time.  Cleveland Clinic rejected us for the same reason that Duke rejected us.  Anya’s liver is of concern for them.  And we just heard back from Pittsburgh on Wednesday.  They are reluctant to take Anya on because she is in the ICU at this time.  The doctor did tell us that they’d be willing to give her an evaluation if she can get stronger after this hospital stay.

At this time, we’re going to turn our focus on getting Anya better from this recent infection.  With this mycobacterium in her lungs, more weight loss, and decreased lung function, it will be hard to convince any center to give her a chance.  However, if we can get two consecutive negative cultures, gain some weight, and perhaps show an improvement in lung function, then I think we’ll have a better chance.  Getting accepted into Houston Methodist Transplant Center in Texas will be our next goal, but first things first, which is to get her stronger…