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

6 thoughts on “Houston Methodist – Day 1: Questions Answered

  1. June Deem says:

    I am praying for you and your family! Today I lit a candle to Our Lady of Perpetual Help Shire for you at my parish, The Basilica of Saint Mary of the Assumption, here in Marietta. I will continue to keep a light shinning there for you. Love to you and your family!

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