Post Transplant – Day 90

We’re still here.  In Houston.  Things are going well.  Anya’s back to her old self again; for the most part.  Her lung function is still hovering around 65%.  Not ideal post transplant, but it was at 42% just 6 weeks ago, so we’re definitely going in the right direction.  It may take up to a year before she reaches her optimal lung function.

The transplant team did have to put a bronchial stent in Anya’s airway this past Friday.  The right side was still narrowing and the one pulmonary doctor, who’s more aggressive, decided that it was necessary.  The plan is to leave it in for four weeks, then reassess.  He’s pretty confident that her lungs will fully heal within 4 to 8 weeks.  He said that it’s getting better every time they go in.  He also said that the left side of her lungs look pretty good.

Anya’s had probably 2 or 3 bronchs since the last update.  There’s been no viruses, no rejection, and no infection found in the lungs in any of those bronchs, which is great news.  We’re just waiting for these damn things to heal, which is a very slow process, especially considering all that she’s been through.

The skin cancers.  We have an appointment next Wednesday to freeze them off with liquid nitrogen.  Hopefully, it will be uneventful.  The plan going forward is to change her immunosuppressant drug, Cellcept (aka Myfortic), to Rapamune, which is better for people with skin cancer.  Also, lower her dose of Prograf, which is her main anti-rejection drug, so that her immune system has a lesser chance of creating new skin cancers.  It’s going to be a delicate balance, as it is always.

The top two things to worry about post-transplant are infection and rejection.  Then, comes cancer.  A lot of the transplant population are more susceptible to all kinds of cancers due to the anti-rejection drugs which lower the immune system.  Anyways, we’ll just have to monitor the skin cancers on a bi-monthly or quarterly basis from here on out.

Overall though, Anya looks and feels great.  Just the other day, we ran from the store to the our car because it was raining and she didn’t even get winded.  She looked at me and said, “I just ran to the car”…and smiled.  The little things that we all take for granted are the things that Anya’s been fighting for all her life.

So, it looks like we’ll be out of here by mid-June’ish.  We have our 4 month check-up this coming Monday, so our 5 month checkup should be in early May, and our big 6 month checkup should be in early June.  If all goes well from now until then, then we should be given the all clear to go home some time after that.  One thing that could hold us back is this bronchial stent in her lungs.  They’re not going to release us until this thing is out of her permanently.  The other thing is the Nissen Fundoplication, which is the acid reflux surgery.  I think the doctor is leaning against doing this, so this probably won’t be a factor.

That’s about it for now.  Here’s what we’ve been doing over the past several weeks:

Blue Bells?

Blue Bells?

Pre Bronchial Stent in the OR

Pre Bronchial Stent in the OR

Duke open practice before elite 8 game

Duke open practice before elite 8 game

Bishop's Palace in Galveston

Bishop’s Palace in Galveston

Galveston - BEACH!

Galveston – BEACH!

Galveston eating seafood at Shrimp 'N Stuff

Galveston eating seafood at Shrimp ‘N Stuff

Freebirds Burritos!

Freebirds Burritos!

Cancelled bronch

Cancelled bronch

Panera (we took a pic like this almost exactly a year ago on this day)

Panera (we took a pic like this almost exactly a year ago on this day)

Natural Science Museum

Natural Science Museum

Space Center Rocket

Space Center Rocket

Selfie on the Tram at the Space Center

Selfie on the Tram at the Space Center

Hermann Park

Hermann Park

Becky and Anya (didn't get a good pic of the rest of the crew)

Becky and Anya

Becky's house with many dogs + 1 horse

Becky’s house with many dogs + 1 horse

Nurse Laura

Nurse Laura

Nurse Laura's daughter who also has CF

Nurse Laura’s daughter who also has CF

3 thoughts on “Post Transplant – Day 90

  1. Steve Weckbacher says:

    Love seeing that smile. Continued prayers for healing….stay strong! Looks and sounds like you’re doing great!

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