We had our first clinic visit last Wednesday, followed up by an ultrasound and bronchoscopy on Friday. We learned a few things:
- Anya’s current FEV1 (lung function) is 42%
- Medically, she does not need oxygen, but the doctor is okay with her using it for a few more weeks.
- Her liver enzymes are slightly elevated (thus the ultrasound on Friday)…we’re not sure about the results yet
- Her right bronchial lobe where they attached the new lung is closing up, so they are going to have to put a bronchial stent in this week. Sigh.
Anya’s lung function was pretty disappointing, but the doctor assured us that he wasn’t too worried about it seeing that she was only 5 weeks post transplant with a trach still in.
Anya did a 6 minute walk without oxygen to see how low her oxygen saturations dropped during the walk and the lowest that it got was 89%. Medically, it needs to be equal to or below 88% before oxygen can be prescribed.
The elevated liver enzymes is nothing new to Anya. The most likely cause is one or two of the meds. The doctor said that it was only slight elevated and he wasn’t too concerned, but he ordered an ultrasound of the gall bladder anyways. We should know the results in the next day or two.
The big one was the bronchoscopy. The doctor said that he was “pretty disappointed” in what he saw. Basically, Anya’s entire right lobe was blocked with mucus, so he said that she was literally breathing with her just upper left lobe. We didn’t even notice because her breathing
pre-transplant versus breathing with “just her left lobe” was still like night and day. The doctor ordered some more breathing treatments to be added to her daily routine (hypertonic saline 7% & pulmozyme). The hypertonic saline loosens the mucus from her lungs and the pulmozyme thins the mucus, so that she can either cough it out or have it absorbed into her body. He also ordered us to suction her pretty diligently on a daily basis.
The other thing that he wanted to do was to put a bronchial stent in her airway to prevent it from closing while it’s still healing. Less than 20% of lung transplant patients require a bronchial stent, but he said that it was a little more common for retransplant patients.
He showed us a picture of Anya’s airway and there’s still quite a bit of white stuff in her lungs. Part of that is narrowing now. I think the protocol is to put a stent in if the airway is less than 50% of it’s normal size.
The other thing that the doctor said was that Anya is “not out of the woods yet”. I asked him what he meant by that and he said that just because Anya’s at home, it doesn’t mean that she is fully healed yet. We still need to be cautious. I asked him if there was a chance that the lungs wouldn’t heal and he said that they will definitely heal, but it will take time. Then, he reiterated the 6-months that we’ll have to stay in Houston before we can go home-home. There’s probably only a slim chance that we can go home sooner than that now.
So, the bronchial stent is a relatively safe procedure. The pulmonary doctor goes into Anya’s lungs like they do in a regular bronchscopy, then inserts a wire mesh tube into one of her lobes to hold the airway open. I think the tube is a temporary thing because he said that they will need to change it every 6 weeks. Anya should notice an immediate increase in lung function as soon as the stent is in place. Anya is a little concerned about this stent, as we all are, but ultimately, I think it will help in the long run. We don’t know when the procedure will take place, but it should be some time this week. The procedure is scheduled for tomorrow, Tuesday, at 8:30am.
With our first clinic visit and first outpatient bronchoscopy behind us, I will say that Anya still looks and feels pretty good. It’s good to see her take a long walk and not be out of breath with every step. We’ve been able to enjoy a little bit of Houston over the past week and half. We took the dogs to Memorial Park on Valentine’s Day and took a stroll around the walking trail. While most of you guys are freezing your butts off, we spent the day soaking in the rays with mid-70s temperatures….haha…