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.

Post Transplant – Days 28 – 33 – Out of the ICU

Anya leaving the ICU with nurse Laura who has a 12 year old daughter with CF.

Anya leaving the ICU with nurse Laura who has a 12 year old daughter with CF.

Anya is finally out of the ICU!!!  The ICU nurse took us to our new room in a different part of the hospital on Saturday morning around 10am.  The new room is in Dunn Tower, room 407.  This is important because a little over 5 months ago on August 28, 2014, Anya and I flew to Houston Methodist in an air ambulance, knowing no one in Houston, scared, nervous, and not having  a clue what to expect.  Five months later, we’re in a room three doors down from where we started this journey.  The difference…Anya has new lungs now.  We’ve come nearly full circle.  There’s only one more stop before the circle is complete — home.

Anya is doing great.  A lot has happened over the past 48 hours.  Her size 6 trach was downsized to a size 4 “Jackson” trach, which is a smaller metal tube used for patients on their way home.  They also capped the trach.  It’s crazy because just 4 days ago, Anya was still on the ventilator and now she is breathing room air just like everyone else.  As a “security blanket”, they’re giving her 2 liters of oxygen through a nasal cannula, which will hopefully be gone after today’s scheduled bronchoscopy.  Her SATs have been great…95 and above.

Dr. Mankidy (pulmonologist) & Dr. Shakespeare (fellow)

Dr. Mankidy (pulmonologist; blue pants) & Dr. Shakespeare (fellow) in Anya’s new room

It’s been over a week since Anya has had a bronch.  They kept canceling the scheduled bronchs last week because her x-rays looked so good that they didn’t think that it was necessary.  As a matter of fact, one of the doctors told Anya that the x-ray of her lungs looked identical to the x-ray of a healthy person that’s never had a lung transplant.  It was great to hear him say that.

This morning, they are going to go in and check on how her lungs are healing.  No biopsy is scheduled.  They’ve done two biopsies so far and there has been no indication of acute rejection, which is a fairly common thing, but still unwanted, within the first year post transplant.  That is good news.

So, pending the results of this morning’s bronch, I think Anya is pretty close to being released from the hospital.  They’ve cut off a lot of the IV meds that she’s been on, like the heparin (blood clot), lasix (diuretic), amphotericin B (strong antibiotic) and they’ve removed most of the tubes and lines that she can’t leave the hospital with.

Anya with mom

Anya with mom

Anya still has a feeding tube.  The plan is to see if she can gain some weight by eating…if not, then she may have to setup the feed to run at night to give her some added calories.  She weighs 82.9 pounds as of Saturday.  After her first transplant, it didn’t take her very long to get back to a reasonable weight. She’s pretty confident that she’ll be able to pack on the pounds once they allow her to eat again, which should be soon.

A few other lingering things…the doctor told us that the mycobacterium abscessus avium infection (MAI) was cultured in one of the bronchs post transplant.  It’s not a cause of concern since the bacteria is sensitive to several antibiotics (bactrim & azithromycin), but Anya will most likely have to be on these two drugs for at least 6-12 months. They are going to add another antibiotic or two for several months.  The pseudomonas has not been cultured since they started treating it at day 5 post transplant.

In the next 3-6 months, Anya will need a surgery called Nissen fundoplication (fundo).  Fundo is a required surgery for most lung transplant patients these days.  GERD or acid reflux is a common condition with CF patients, including Anya, and what happens with GERD is that the stomach acid can aspirate into the lungs leading to chronic rejection.  To combat this problem, Nissen fundoplication surgery is performed so that the acid stays in the stomach and not in the lungs.  This surgery is something that the transplant team wants Anya to do before we leave Houston.  Usually 3-6 months post transplant.  We may be able to have it done back home, but we’ll have to talk to the transplant team first.  Also, there is a new procedure out there called LINX that is less invasive and easier to recover from.  We’re going to push for that, but insurance doesn’t always cover it and the transplant team may not approve of it.

So, that’s about it for now.  Like I said, Anya is doing great.  Her spirits are great.  She’s just happy that she can breathe again.  We watched the Superbowl in her hospital room last night and she’s happy that she got to watch another Superbowl.  There was a time not too long ago that she didn’t think she’d ever watch another Superbowl…

Post Transplant – Days 22 – 27

Crazy that we’ve been here for four weeks already. Yes, we’re still in the ICU. It’s getting a little frustrating.  Okay, maybe a lot frustrating. The transplant team cleared Anya to leave, but there is a holdup with insurance now. They denied the transplant team’s first request to be moved over to Kindred about two weeks ago.  No clue why they would want to spend more money keeping us here in the ICU versus kindred. I’m sure they have their reasons. Whatever they are.

So, Anya’s been doing great. I can honestly say that at this point, I feel like she is in the best shape that she’s been in since we arrived in Houston.  Her breathing is great, that “pleural effusion” discovered in the X-rays last week is totally gone, and that bacterial infection did not show up in her cultures so they discontinued the new antibiotic…the only thing that remains is the ischemic injury in the left lung, which is getting “much better” according to the doctors.  The team is ready to release her to Kindred, so I think that speaks volumes.

Anya enjoying the sunshine with her awesome physical therapist, Chris.

Anya enjoying the sunshine with her awesome physical therapist, Chris.

I don’t think that we’ll be at kindred for very long once we get there.  Anya’s been walking like a champ.  For two days in a row this past weekend, she walked several hundred feet without stopping and barely got winded.  The walking is not the surprising part because she was walking a lot more at Kindred pre-transplant, but it’s the “barely winded” part that’s amazing.  It’s been a while since Anya has been able to breathe like this.  It’s such an amazing sight to see her breathe so much easier.

I think almost all problems have been resolved so far.  The transplant team is planning on doing another bronchoscopy tomorrow afternoon to clean up the lungs and see how the ischemic injury is healing.  If they like what they see, then I think the next step will be getting Anya off of the ventilator completely.  I don’t think she needs it now, but they are keeping her on it to help her lungs heal faster.  If she gets off of the ventilator completely, then I think insurance will move a little faster getting her out of the ICU.  I’m hoping that we leave here before the end of the week for Anya’s sake.  She’s really been struggling with life in the ICU.  Four weeks in the ICU will drive any sane person crazy.

Other than that, there’s not a whole lot that has happened.  They did remove the IV line in her neck and replaced it with a central line catheter in her left upper chest.  The latter is a more of a longer term IV line where they can draw blood and administer medicine for the next several months while Anya continues to recover from the infections and the surgery.  The IV line that was in her neck after the transplant is not something that you want to leave the hospital with, due to the high risk of infection.

That’s about it for now.  Hopefully, in the next post, we’ll be over at Kindred.

Here’s Anya talking to her sister and Parker for the first time in about 3 months with the help of a Passy-muir valve: