Her lung allocation score is 50, which is right smack in the middle of the 0-100 range.  Fifty is a pretty high number, but not so high that she needs a transplant tomorrow.


Official listing letter

Now that Anya is listed, what happens next?  Basically, we just wait for a set of matching lungs.  Once our organ procurement center finds a pair of matching lungs, then Anya will be transported over to Houston Methodist and prepped for transplant.  The total transplant time usually takes around 4-5 hours mainly because the biggest limiting factor of transplantation is that organs do not last outside of the body for very long.  Lungs generally last for no more than 6 hours outside of the body.

It’s not uncommon for a transplant candidate to go through multiple “dry runs” before the actual transplant, so even if we do get “the call” tonight, it may not necessarily be a “go” on the first time.  Anya went through one dry run with her first transplant.

How long is the wait going to be?  Based on what I’ve researched, the median waiting time at Houston Methodist is 48 days, but this is for all lung transplant patients.  A lot of the waiting time depends on the transplant candidate’s LAS, blood type, and where the candidate is located.

Here are some of the median wait times for the top lung transplant centers across the country:

Anya waited nearly 3 years for her first transplant in 2008, but the circumstances were totally different then.  Her LAS was not nearly as high as it is now.

Some more stats, as of November 14, 2014, in all of Texas, there are 181 active lung transplant candidates total.  Nine out of 181 of these candidates have an LAS of 50 or higher.  Of these 9, there are only 5 within our Donation Service Area (DSA).  Of those 5, there is only 1 other person with the blood type B, which is Anya’s blood type.  What this means is that if matching donor lungs are found today within our DSA with the blood type B, then it will either go to Anya or the other guy first.  Our DSA consists of 8 transplant centers, but only 2 of them are adult lung transplant centers, St. Luke’s and Houston Methodist.

Obviously there are many other variables at play here, like the fact that transplant candidates are being added and removed from the waiting list on a daily basis.  Also, the size of the lungs is a big determining factor as well.

The truth is, no one really knows for sure when matching lungs will become available.  The head of the pulmonary team said “a couple of weeks”.  The nurse practitioner said “3 months”.  The other guy that’s currently on the waiting list with Anya’s blood type has been waiting between 3-6 months already.

Thank you VA Orange and Rhinos for sending this!

Thank you VA Orange and Rhinos for sending this!

How Anya’s doing?  Lately, every time I ask her how she’s feeling, she says “ehh, I’m okay” with a wiggle of the hand.  She’s been on the ventilator full time for about two weeks now.  Her CO2 levels were going too high every time she went on the trach collar, so the team decided to just keep her on the vent until transplant.  She seems to be doing a lot better on the vent.

Her weight has been slowly rising.  Today, they weighed her at 84.3 pounds, which puts her BMI at 16.5.  Another 2.7 lbs and she’ll be at the 17 BMI minimum that most centers want for their transplant patients.  Her weight has been such a struggle, but I feel like they finally found a way to control the diarrhea and nausea to help her absorb the nutrition from the tube feeds.  She’s probably gained about 12-13 lbs from her lows, which was not too long ago.

Photo Nov 03, 11 09 58 AMAnother big checkmark is that Anya has been walking quite a bit lately.  The pulmonary team doesn’t mind her being on the ventilator, but they absolutely stressed that she must walk daily.  Today, she walked a total of 5 laps around the floor, which is roughly 2200 ft or the length of 7.5 football fields.  The idea is to keep her chest muscles working and build up strength to help her post-transplant.  They call it pre-hab.  She’s been doing an amazing job at walking.

Everything else has been pretty stable for the most part.  The infectious disease team put her on two new antibiotics for 10 days, mainly as a precaution because her last sputum culture grew out pseudomonas and stenotrophomonas, two common bacterial infections in pre-transplant cycstic fibrosis patients.  Her breathing hasn’t really changed, nor did the x-rays show anything abnormal so they were content to stop the two new antibiotics after 10 days.

One of the biggest issues now has been her anxiety.  It’s gotten a lot better, but there were nights where she would wake up gasping for air and the respiratory therapist would have to bring out the big green football looking thing and bag her until she was able to calm down.  I never realized how big of a part anxiety played in pre-transplant patients, but apparently it is a very common thing.  To me, this has been one of the most frustrating things lately because seeing her gasping for air has been scary.

So, that’s about it for now.  This week was a great week.  It’s been such a long journey and to think that getting listed is just the start of it, but we are thankful to even have this chance.  We’re also thankful to everyone for their tremendous support over the past few months.  I would start listing names, but there are way too many to thank.

Mid-walk group selfie

Mid-walk group selfie

4 thoughts on “Listed!!!

  1. kate Goodrich says:

    Such great news. As the new kids on the block would say she’s “Hangin’ tough”… complete with awesome dance moves! Love you!

  2. Larry and Becky Love says:

    I have been following Anya’ story for quite sometime. Larry, my husband, grew up close to Crum Ridge where your dad and Uncle Vernon are from. I have met your dad before and know Vernon well. Our prayers are with you and your family that all goes well for you as the next phase of this journey begins. Our God is an awesome God and the fervent prayers of a righteous man availeth much.

Leave a Reply

Your email address will not be published. Required fields are marked *