Listed!!!

ANYA IS OFFICIALLY ON THE WAITING LIST FOR A SECOND LUNG TRANSPLANT!

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.

anya-listed-letter

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

Update

Anya’s still not listed yet.

The transplant surgeon came in last Tuesday and cleared Anya for transplant with some stipulations:

  • keep BMI above 15
  • walk daily
  • trach collar daily

Anya weighed 80.4 pounds on Friday, which put her BMI at 15.7.  She’s been walking at least 880 feet every day, except Sundays when the physical therapists are off.  As far as the trach collar, Anya’s CO2 levels went up to 85 last week (normal 35-45), so she’s been on vent support (SIMV) since Friday.  I talked to the pulmonary team about this and they told me that her physical strength (walking) is more important than weening off of the ventilator, so they are not as concerned with being on the trach collar daily.  We are still going to try to get Anya on the trach collar for about an hour or two daily, but we need to make sure her CO2 levels are lower than the 85 that we saw on Friday.  Being on the trach collar is important because it helps build up the muscles used to breathe.  The downside of the trach collar is CO2 retention.

The liver team came in last Wednesday.  They reviewed her liver biopsies from Fairfax (June 19th) and Duke (March 28th), along with the pathologist reports.  The only thing they were missing was the gradient numbers from her latest liver biopsy.  I sent them the medical records that I received from Fairfax Inova before I left and they were happy with those numbers (6-7 mm HG).  Anya has stage 3 fibrosis in certain parts of her liver (stage 4 is cirrhosis).  Cystic Fibrosis is known to cause damage in other organs, like the pancreas, liver, and intestine.  Anya’s pancreas and intestines are fine, however, her liver was the main concern and reason why Duke, UPMC, and Cleveland Clinic rejected us for a 2nd transplant.  The liver doctor over at Houston Methodist described her liver as having “spotty cirrhosis”.  Because the two liver biopsies were inconclusive for full blown cirrhosis, the doctors had to use the gradient numbers to determine if she did indeed have cirrhosis or not.  Based on Anya’s gradient numbers, the liver team believes that her liver will be fine for transplant.  The liver team fully cleared Anya for transplant on Wednesday.

So, what’s the game plan for now?  Well, the good news is that Anya is fully cleared for transplant by all teams.  Our transplant coordinator sent all of our paperwork to the insurance company on Friday to get proper approval for transplant.  Lung transplants usually cost between $500,000 to $1,000,000.  If all goes well, then we should have insurance approval by the end of the week.

Once approved, then our transplant coordinator will send our application to the United Network for Organ Sharing (UNOS) to get Anya officially listed for a lung transplant.  Once listed, UNOS will give us a Lung Allocation Score (LAS) to determine how high Anya is on the list.  The LAS ranges from 0-100, with 0 meaning that the candidate is not yet eligible for transplant, and 100 meaning that the candidate needs a transplant today.  Although Anya is not officially listed yet, the nurse practitioner told us that Anya’s score will most likely be around 60.

I’ll share some more information on median wait times, lung transplants performed, and transplant candidate numbers after we get word from the insurance company.  Just FYI, the transplant will most likely not happen immediately.  Being listed is just the first important step in the process.

<deep breath>

Kindred Hospital – Week 7 – MRB

The medical review board (MRB) met this morning to discuss Anya’s case.  Around 10:30am, the nurse practitioner and surgeon’s assistant came in to give us the news.  The transplant surgeons (two of them) want to meet with Anya and see her before listing her.  Also, the liver team wants to “lay eyes on her” before giving the okay.  Hopefully, these two things will happen before the day is over.  If not, then they will most likely happen tomorrow.

The good news is that the infectious disease doctor fully cleared Anya for transplant.  As a matter of fact, the doctor’s assistant came in just a little while ago and told us that the doctor texted her this morning at 7am (before the MRB meeting) and told her that he was going to clear her for transplant.  That is most definitely great news.

I asked the doctor’s assistant how the infectious disease doctor came to his decision and she told me that the team believes the “benefit” of transplant is greater than the “risk” at the current moment.  Phew!

So, as of 2pm, Anya is not listed yet.  We are hopeful that she will be listed before the week is over.  Please keep the positive thoughts coming.  We need just about every little bit of it right now.