Listed – Weeks 3 & 4

We had our first dry run last Saturday (December 6th). Our transplant nurse practitioner, Tiffany, called around 1pm and said “we have lungs!”. She told us to sit tight until they received some more information. As if we were going anywhere… but we did sit tight, and around 2:15pm, Tiffany called back and said that it was only a single lung and we needed a pair, so it was a no go.

It was pretty disappointing, but at the same time, it was very encouraging that we got our first call only two weeks after being listed. It’s been a very nerve racking several weeks knowing that Anya could get “the call” at any time now. She could get the call tonight and be in surgery by tomorrow morning…it could be that fast.  Scary, but I know that the transplant is the ultimate goal.

Rick and Kim, two the best physical therapists, helping Anya walk

Rick and Kim, two of our favorite physical therapists, helping Anya walk

Anya’s been doing well.  She’s been walking at least 5 days a week.  Yesterday, she walked 5 figure eights around the floor, which equates to about 2720 feet and she only stopped twice.  She also walked two laps in the morning, so seven laps total for the day was the most that she’s walked in one day since we’ve been here.

Her recent sputum cultures didn’t grow out anything significant, except for a very minute trace of CMV, which the team was not too worried about because the sputum cultures come from the trach tube, which could be contaminated.  There has been no other positive mycobacterium abscessus culture since the July.  In terms of infection, she hasn’t produced much mucus lately, which is a good sign that the infection is under control.  She’s still on a pretty strong antibiotic called Zyvox and I think, Bactrim, to help with the abscessus.  She’ll most likely be on these two drugs even after transplant, for a good 6 months to a year.

Anya and dad

Anya and dad

Her weight has been pretty steady over the past few weeks.  Her weight went up to around 88 pounds a few weeks ago, but we think some of that was water weight.  The team has been giving her Lasix, which is a diuretic to help reduce the swelling.  Yesterday, Anya weighed 84 pounds, which puts her BMI at 16.4.   She’s been hovering around this area for a few weeks now.  We switched her tube feeding formula to a less caloric dense formula yesterday….1.2 calories per ml versus 2.0 ml in hopes of fixing her diarrhea issues.  Instead of getting 3,120 calories per day, she’s getting 2,448 calories now, with the hopes of retaining and digesting more of those calories.  We’ll see how that goes.

donation service area - texas - lifegiftOverall, things are going well.  We’re just waiting for a good set of lungs now.  I just checked the OPTN website and Anya is now at the top of the list for her blood type (B) in our donation service area (DSA), which is LifeGift Organ Donation Center.  Our DSA covers all of Houston and some of the surrounding area, so I really don’t think that it will be too much longer now.  I found this picture of our DSA:

BTW…here is our current address for anyone wanting to send christmas cards or anything…some of you have asked for it:

Anya Crum, 6441 Main Street Room 528, Houston, TX 77030

Listed – Weeks 1 & 2

Not much has happened over the past two weeks.  Our dog, Remy, ate an entire box of cookies, which put him into a food coma for 2 days.  Our other dog, Rudy, somehow got his lower canine embedded into his lower lip, which resulted in a trip to the vet.

Photo Oct 30, 8 00 12 PM

Definitely guilty.

Photo Nov 21, 4 11 22 PM

Get your hands out of my mouth!

Sleepy head.

I’m on drugs.

Anya’s mom and I spent Thanksgiving with Anya in her room.  Jocelyn and Patrick sent us Thanksgiving dinner in a box from Omaha Steaks (thanks for that!).  Becky, Lauren, Stephen, and Luke stopped by to say hi on Thanksgiving evening.

Photo Nov 27, 6 00 29 PM

Thanksgiving dinner

Photo Nov 27, 6 52 29 PM

sorry, i didn’t get Luke in the picture

Not much else has really happened since Anya got listed two weeks ago.  We’re just waiting for “the call” now.  As of November 28th, there is still only one other person with the blood type B and an LAS of greater than 50 in our donation service area, so Anya is most likely second in line right now.  She may even be first in line, depending on the size of the incoming lungs.

Anya is continuing to get stronger every day.  The occupational therapist comes in daily to do breathing and weight exercises for about 30 minutes.  The physical therapists take Anya on walks at least once a day, but usually twice a day.  Anya’s been doing great on her walks lately.  Yesterday, she walked 1,200 feet without stopping to rest.  It’s probably the best she’s done since we’ve been here at Kindred.  She walks anywhere from 900 feet to 2,500 feet daily, the length of 3 to 8.5 football fields.  Post-transplant success is directly related to physical strength pre-transplant, so that’s why every doctor has been stressing the importance of exercising daily.

Anya’s weight has been steadily increasing too.  She weighed 84 pounds yesterday.  Last week, she was 88 pounds, but we knew that something was off because she was putting on a lot of weight, quickly, so we told the doctors and they prescribed a diuretic (Lasix) to help reduce some of the water weight.  Her arms and legs were swelling a little bit.  We figure that her real weight is probably around 80-82 pounds, which is great considering where she was just a month ago.

Anya’s feeding tube twisted inside of her stomach last Wednesday, so the GI docs had to replace it.  This is the second time that it’s happened.  The first time, the entire tube came out, so they had to wait for the incision to heal before replacing it.  This time, the tube was still in place, so the docs just had to pull the old tube out and thread the new one back in, which was much less invasive and much less painful.  Unfortunately, Anya lost about 5 days of weight gain during that time because it happened the day before Thanksgiving and there were no doctors able to do the procedure until the following Monday.

Anya’s hemoglobin fell below the critical level (7.0) a few weeks ago.

“Hemoglobin (Hb or Hgb) is the protein in your red blood cells that carries oxygen. A low hemoglobin count is a below-average concentration of the oxygen-carrying hemoglobin proteins in your blood.”

— http://www.mayoclinic.org/symptoms/low-hemoglobin/basics/definition/sym-20050760

The low hemoglobin is most likely the result of the nutritional problems that we’ve been dealing with.  The doctors are giving Anya intravenous iron to help with the production of the red blood cells.  It’s going to take a few weeks, but hopefully it’ll help with the blood problems.  The doctor explained to us that her levels are not at a “severe” level yet because she’s been hovering around 6.8 to 7.5 depending on how they draw the blood, but he wanted to see what they could do before it got to a bad level (below 6.0).  The alternative would be to have a blood infusion, but the problem with that is that antibodies could build up causing post-transplant rejection problems, which is something the doctors want to avoid.  The doctors are keeping a close eye on it, but as of right now, it’s not a major concern.

That’s really about it for now.  Anya’s doing pretty good.  The good days seem to be way more frequent than the bad days now.  Being here at Kindred has really been the best thing for us.  I feel that Anya is the strongest that she’s been for the past 3 months.  Just waiting for a good set of lungs now…  I have a feeling that they will be coming soon…

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