So far, so good

It’s been an amazing 24 hours!  Anya is awake and alert.  She’s still on the ventillator (assisted support), but they are going to take her off the vent and put her on the trach collar around 6pm.  By tomorrow morning, the plan is to get her vertical to help with the draining in her chest cavity.  Right now, she has four chest tubes in her draining out fluids and blood.  This is normal.

When we went to see her this afternoon around 4pm, she was joking, she was agitated, she was upbeat and she was very happy to be awake.  Honestly, I couldn’t believe the way she looked.  I was expecting a lot more swelling and definitely expecting her to be asleep.  She was only slightly swollen around the neck area, but that was about it.  I don’t think there’s a protocol for transplant recovery, so they go as fast as they think the patient can go.  I think all of the hard work that Anya put in before transplant is helping her now.  Thanks to Kindred  Also, I’m sure that she’ll be feeling it a little bit more after the pain meds start wearing off.

Anyways, things are going well.  According to the ICU nurse, the bloodwork was pretty “unremarkable”, which  means that her kidney function, potassium levels, magnesium levels, hemoglobin levels, platelets, etc. are all within a reasonable levels.  Nothing too alarming.  We spoke to the infectious disease doctor and he was encouraged by how Anya was on such low support with the ventilator already.  He was very optimistic.  The pulmonary doctor said that everything looked great in the bronchoscopy.  She was SAT’ing well on the new lungs.  His only concern was the bleeding, but he assured me that the surgical team was on top of it during the surgery, so it should be fine.

Things are looking good right now, but we’re not entirely out of the woods yet.  I mean, it’s only been 24 hours.  There’s still a long road ahead of us, but I would say that things look very encouraging right now.

Thank you everyone for your tremendous support!  Every single comment on this blog or facebook or text message or in person…it means to world to us.  This process has been so hard for us in so many different ways, but knowing that there are people out there thinking about us and wishing the best for us, means a lot.  Thank you so much.

It’s a go!!!

Its 2:30am on Wednesday.  Anya’s going into surgery now.  The surgeon said that they should be done by 9am depending on how many adhesions they have to deal with.

All that we know about the donor is:

  • Between the ages of 30-40
  • female
  • not high risk (tattoos, prison, drug addict, etc.)
  • about the same size as anya
  • her death was an accident

We’ll know more soon.

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