Houston Methodist – Day 2: More Tests

Photo Aug 30, 8 53 10 AM

Our agenda for the day.

Only 2 of the 5 scheduled tests were performed.  The “stress test” was rescheduled for tomorrow, as well as the “echo” and “modified barium swallow”.  It took about 2 hours to do both of the CT scans.

I told Anya that I could probably just eat some potato chips in her ear for the stress test.  No need to waste the doctor’s time.

I guess it was somewhat of an uneventful day, in terms of tests.  Anya was able to get a shower in; first time in nearly two weeks and she did it all by herself!

We did get some visitors today, Becky and her daughter, Lauren.  It’s always nice when people go out of their way to do something for no other reason than the kindness of their heart.  And I’m not just saying that because they brought us pizza.  Thanks for the visit…and the pizza!

Photo Aug 30, 6 51 22 PM (1)
Photo Aug 30, 6 56 52 PM

In addition to all of this fun, two doctors came to visit. The liver transplant doctor came in first.  Again, he was very reassuring. He said that based on what he’s seen so far, he doesn’t think that Anya will need a liver transplant. They will need to do another test or two, but if need be, they will list her for a double lung redo + liver. I asked him if they’ve ever done this before and he told me that they’ve transplanted around 10 total and 5-6 of those were CFers. I will confirm with the pulmonary doctor.

The pulmonary doctor came in next.  He just kind of reiterated what he said the previous day….finish all of the tests, meeting on Tuesday, stay the course…

That’s about it for the day.

Houston Methodist – Day 1: Questions Answered

Breakfast

Breakfast

Anya spent the entire day being poked and prodded in every single vein and hole that they could find in her body.  I felt so bad for her.  At one point, they tried to draw some blood from an artery in her arm for an ABG (arterial blood gas) and the nurse hit a nerve; Anya started crying.  When Anya cries due to a needle, I know it’s really gotta hurt because she’s been through this so many times before and she’s never cried for a needle.  If only I could “take one for the team” sometimes.

Blood collection and no, those are not whiskey bottles

Blood collection and no, those are not whiskey bottles

So, we learned quite a bit today.  The transplant team over here is planning on running every single test that a new lung transplant patient goes through, on Anya.  They want their own baseline, which means, heart cath, vials and vials of blood, mucus samples, urine samples…you name it, and it’s coming out of Anya.  They plan on cramming all of these tests into the next 4-5 days.

We also learned that the entire transplant team meets every Tuesday morning to make a decision on patients going through the evaluation process.  Their plan is to have Anya’s case discussed this coming Tuesday.

The pulmonary doctor also gave us some very encouraging news.  He went into quite a bit of detail about what we should expect over the next few days.  He pretty much answered all of our questions.

  1. Mycobacterium Abscessus – He doesn’t think this will be an issue because once the old lungs are removed, most, if not all, of the mycobacterium will be gone or treatable post-transplant.
  2. Liver – The liver is still their biggest concern.  However, they knew about Anya’s liver biopsy results before they asked us to come down for the evaluation, which is great news.  They even had their liver team analyze the slides, and they confirmed what the liver team at Duke confirmed, which is that they firmly believe the liver will hold up with another lung transplant.
  3. Weight – Anya weighs 83 lbs now.  Her height is 4’11 1/2″.  This puts her BMI at 16.8.  At Duke, they wanted a BMI of at least 17.  The doctor here said that they’ve transplanted patients with a BMI of 14 before, so he said that Anya’s weight should not be an issue.
  4. GERD (acid reflux) – Anya has GERD, as do most CFers.  Studies have shown that GERD could contribute to BOS because of the aspiration of acid into the lungs.  He recommended that we do the Nissen Fundoplication surgery a few months post-transplant to lessen the effects of GERD.
  5. Diabetes – Anya was diagnosed with diabetes a few months ago.  Again, a lot of Cfers also have diabetes.  The doctor doesn’t see this as a major factor in their decision.
  6. Skin cancers – Anya had a few squamous cell carcinomas on her head, chest and arms, mainly due to the drug, Cellcept (anti-rejection, immunosuppressant), not too long after her first transplant.  She hasn’t had any since 2011, after they took her off of Cellcept.  However, taking her off of Cellcept could also have contributed to her BOS.  She’s going to need to be on this drug for at least a month post-transplant, but again, he didn’t seem too concerned about this.

Overall, today was a very productive day.  There’s still a lot to be done.  All of her blood work, sputum cultures, etc. have to come back clean.  They’re also going to test her heart, kidneys, and maybe, liver, again.  Once they have all of these test results, then they’ll have an answer for us.  The transplant coordinator gave us a 50% chance of getting accepted.  The doctor seemed a little more optimistic.  We’re hoping for the best.

Houston Methodist Atrium

Houston Methodist Atrium

Houston, We Have Landed!

Things have been moving so fast over here.

On Monday morning, Anya was still intubated and we weren’t sure if she’d be able to get off the vent on her own.  In addition, the doctors told us that she might have a new lung infection in her lower lobes.

Fast forward three days.  Anya’s breathing has gotten so much better that I would say she’s probably breathing better than when she was at home before the hospital visit.  If I weren’t here to see it, I probably wouldn’t believe it.

Then, yesterday, we received the good news that Houston Methodist accepted Anya for a transplant evaluation.  What a whirlwind of emotions it’s been.

Photo Aug 28, 4 45 56 PMHere I am, sitting in an Air Ambulance right now, flying to Houston, TX (Thank you papa Crum for this).  I’m not quite sure what to expect over there.  Do they know about Anya’s liver?  How about the mycobacterium Abscessus?  The social worker over at Houston Methodist made it a point to tell us that this is just an evaluation and not an acceptance into their lung transplant program.

At this point, I guess we’re just happy to have this opportunity.  I’m pretty confident that Anya will be able to meet all of the physical challenges of their program, but things like the liver and the mycobacterium will be completely out of our control.  Those are the things that scare me.

Photo Aug 28, 9 04 27 PMAnya seems to be in good spirits right now.  She kept saying in the medical transport that she couldn’t believe that this was happening.  Five days ago, we were all in a pretty dark place.  Anya asked her dad to say a prayer for us, while the three of us held hands, letting the tears flow.  Anya asked her niece and nephew to come in and give her a hug before they wheeled her off to do the two procedures.

I hate to relive those moments, but I heard this quote from the tv show, The Knick, the other day…”in the blackest darkness, even a dim light is better than no light at all”.

Thanks everyone for your support.  All of the outpouring from the Facebook page, text messages, emails, phone calls, hospital visits, DONATIONS, have really helped Anya keep her mind off of the unknown, and more into the known, which is that there are many people out there that care for and love Anya.  #StayStrongAnya