Bronchial Stenosis Procedure

We arrived at the hospital around 8:45am yesterday morning.  It took about 2 hours to get back to the surgery pre-op area.  Once there, the nurses went through the standard pre-surgery protocol (list of meds, blood pressure, O2 sats, blood sugar, risks, etc.).

bronchial stenosis pre-op

bronchial stenosis pre-op

The pulmonologist talked us right before they rolled Anya back to the operating room around 10:50am.  He told us that they were going to balloon the affected area before attempting to put in a metal stent.

Around 11:50am, I went back to the waiting area and saw the pulmonologist standing there waiting for me.  He told me that they didn’t put the stent in because she didn’t need it at this time, but he did balloon part of her bronchial lobe to open it up a little bit.  He drew me a picture that looked similar to this one:

respiratory tree

The part labeled “D” is where the white stuff is located.  He said that the white stuff was “slough” (aka dead cells) and not the airway closing up.  He actually said that the size of her airway in that area was pretty “normal”.  If anything, they will put a stent in later.

It’s crazy how one doctor says one thing and then the next doctor says another.  The doctor who did the bronch on Friday was a different doctor than the one yesterday.

Anyways, I think it’s good that they didn’t put the stent in.  Even though the procedure is relatively safe, the metal stents tend to harbor unwanted bacteria and fungus, which could cause infections later on.  Anya does not need any more infections or colonizations of bacteria in her lungs.

The plan from here on out is to do a bronch every other week to clean and suction the “slough” out of her lungs.  I don’t think Anya will have any problems with the healing, since she is breathing pretty good right now.

Without the stent, I think we have a better chance of getting out of here by the spring time. That’d be nice.

Home (Houston) – Days 1-10

We had our first clinic visit last Wednesday, followed up by an ultrasound and bronchoscopy on Friday.  We learned a few things:

  1. Anya’s current FEV1 (lung function) is 42%
  2. Medically, she does not need oxygen, but the doctor is okay with her using it for a few more weeks.
  3. Her liver enzymes are slightly elevated (thus the ultrasound on Friday)…we’re not sure about the results yet
  4. 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.

first stop - bloodwork

first stop – bloodwork

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

getting ready for the bronch

getting ready for the bronch

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.

Photo Feb 13, 3 16 01 PM

White stuff and airway closing – picture is worth a thousand words

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…

Dogs are wandering around below somewhere

Dogs are wandering around below somewhere

 

Home Sweet Home (Almost)

Anya spent exactly 172 days in the hospital; 5 months and 19 days.  Last Thursday, she came home.

You just won a trip to home, how do you feel Anya?

You just won a trip to go home, how do you feel Anya?

It’s been such a long journey.  SUCH A LONG JOURNEY.  Coming home was a big deal.  A HUGE DEAL.  Anya’s mom captured the moment we stepped in the door on her ipad:

Me, Anya, Jocelyn

Me, Anya, Jocelyn

And here are the doggies seeing Anya for the second time in about 6 months:

Just a little over a week ago, we were still in the ICU.  And now, we’re home.  What a feeling.

We still have a little ways to go, but I think the hardest part is over.  The plan is the stay in Houston for several more months until the transplant team gives us the okay to go home-home (Virginia).  If all goes well, then we should be back by the spring time.  Fingers crossed.

So, I feel like everything is pretty much under control now.  The biggest issue is that Anya still has a little bit of “mush” at the bottom of her lungs, in her lower lobes.  Yes, that is the term that the doctor used…”mush”.  The doctor doesn’t know exactly what’s causing it.  It could be the pseudomonas (bacterial infection), it could be the perfusion/ischemic injury (lack of blood to the lungs), it could be “a little pneumonia”…whatever it is, the plan is to do weekly bronchoscopies to clean out the lower lobes of her lungs.  The “mush” is too far down her lungs for her to cough it up herself, so they need to go down there with a tube to clean and suck it out.

With that said, Anya’s breathing has been pretty good.  If I had to guess, I’d probably say that her lung function is around 60-70% right now; much better than the ~15% that it was pre-transplant.  It may take several more months for her lung function to get back to full capacity.  Some post-transplant patients don’t see their peak lung function until two years out.  There’s still a lot of healing that needs to be done.

What happens now?  Well, we have a clinic appointment once a week where Anya goes to the outpatient center to get a full blood panel, spirometry test (lung function), x-ray and/or CT Scan, and then a visit with either the nurse practitioner or a pulmonologist.  From there, the transplant team determines whether to add/remove/change her drug regimen and assess her overall health.  Currently, Anya still has an active Pseudomonas infection and she is still being treated for Mycobacterium Avium Infection (MAI) and Mycobacterium Abscessus.  They’re all under control with the help of a few antibiotics.  It’s common for CF patients to colonize these bacteria in their lungs, even after transplant, so she will most likely be on several antibiotics for several months, and some for up to a year or more.  With that said, these bacterial infections are nothing new to her.  She’s had to deal with these infections before and after her first transplant too.

Anya still has a trach, which is capped off.  They want to keep it in her for the bronchoscopies and suctioning, as needed.  I don’t think that it’ll be in her for that much longer though.

She still has a feeding tube as well.  The plan is to keep the feeding tube for use at night, which will give her about 1,000 calories while she sleeps.  This nutrition will be in addition to whatever she eats during the day.

Overall though, I think Anya is doing great.  She looks great.  Her spirits are so much better now that she’s at home.  And the spunk is coming back.  We’ve gone for a few drives around Houston over the past few days.  Up until Friday, the only places that she’s visited in Houston were Kindred and Houston Methodist.  Now, she’s been able to see some of the places that we’ve frequented while she was in the the hospital.  We’re still trying to avoid crowded places and if need be, have her wear a protective mask, but just being able to go outside without being tethered to a ventilator is a gift in itself.

Our first clinic appointment is this Wednesday.  They’ve also scheduled a bronchoscopy for Thursday.  Other than that, Anya is just enjoying her time out of the hospital as much as she can.  She just started binge watching Orange is the New Black.  And catching up on all of the shows that she missed while in the hospital.  There’s a ton of shows that she’s missed over the past 5 months, so I think that’ll keep her busy while we’re waiting for the final okay from the team.  Hopefully soon, they’ll release us to go home-home.  I can’t believe that we’re even talking about that…