Post Transplant – Days 22 – 27

Crazy that we’ve been here for four weeks already. Yes, we’re still in the ICU. It’s getting a little frustrating.  Okay, maybe a lot frustrating. The transplant team cleared Anya to leave, but there is a holdup with insurance now. They denied the transplant team’s first request to be moved over to Kindred about two weeks ago.  No clue why they would want to spend more money keeping us here in the ICU versus kindred. I’m sure they have their reasons. Whatever they are.

So, Anya’s been doing great. I can honestly say that at this point, I feel like she is in the best shape that she’s been in since we arrived in Houston.  Her breathing is great, that “pleural effusion” discovered in the X-rays last week is totally gone, and that bacterial infection did not show up in her cultures so they discontinued the new antibiotic…the only thing that remains is the ischemic injury in the left lung, which is getting “much better” according to the doctors.  The team is ready to release her to Kindred, so I think that speaks volumes.

Anya enjoying the sunshine with her awesome physical therapist, Chris.

Anya enjoying the sunshine with her awesome physical therapist, Chris.

I don’t think that we’ll be at kindred for very long once we get there.  Anya’s been walking like a champ.  For two days in a row this past weekend, she walked several hundred feet without stopping and barely got winded.  The walking is not the surprising part because she was walking a lot more at Kindred pre-transplant, but it’s the “barely winded” part that’s amazing.  It’s been a while since Anya has been able to breathe like this.  It’s such an amazing sight to see her breathe so much easier.

I think almost all problems have been resolved so far.  The transplant team is planning on doing another bronchoscopy tomorrow afternoon to clean up the lungs and see how the ischemic injury is healing.  If they like what they see, then I think the next step will be getting Anya off of the ventilator completely.  I don’t think she needs it now, but they are keeping her on it to help her lungs heal faster.  If she gets off of the ventilator completely, then I think insurance will move a little faster getting her out of the ICU.  I’m hoping that we leave here before the end of the week for Anya’s sake.  She’s really been struggling with life in the ICU.  Four weeks in the ICU will drive any sane person crazy.

Other than that, there’s not a whole lot that has happened.  They did remove the IV line in her neck and replaced it with a central line catheter in her left upper chest.  The latter is a more of a longer term IV line where they can draw blood and administer medicine for the next several months while Anya continues to recover from the infections and the surgery.  The IV line that was in her neck after the transplant is not something that you want to leave the hospital with, due to the high risk of infection.

That’s about it for now.  Hopefully, in the next post, we’ll be over at Kindred.

Here’s Anya talking to her sister and Parker for the first time in about 3 months with the help of a Passy-muir valve:

 

 

Post Transplant – Days 18, 19, 20, & 21

Things are going well.  Anya’s been walking like a champ.  Today, she walked about 300 feet stopping only once to look outside of the hospital window.  It’s been a long time since she’s been able to walk this far, this fast without getting winded.  It’s pretty amazing really.

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I think the pulmonary arterial stent helped.  It opened up the blood flow to her left lung allowing her to push her new lungs a little harder.  The proof is in the walking.

The pulmonary doctor performed another bronchoscopy on Anya on Monday.  They sucked away quite a bit of the dead white tissue inside of her new lungs, revealing the healthy lung tissue.  They said that it’s going to take a few more weeks, perhaps.  There’s no real timetable on how fast her lungs are going to heal, but they are encouraged by what they’ve seen recently.

A few other things popped up over the past few days.  Her chest x-rays showed a splotch of fluid around her right lower lobe.  The doctors ordered a CT scan which revealed some pleural effusion which is just fluid between the outside of the lungs and the inside of the chest cavity.  It wasn’t a significant amount of fluid, but enough for them to investigate.  The doctors determined that they were just going to leave it alone.

Pleural effusion a few weeks post transplant is not an uncommon thing and usually the fluid just gets reabsorbed back into the body once the nutrition and movement comes back.  Anya  mentioned that she had this same thing happen to her after her first transplant and the doctor used a big needle to extract the fluid but there’s a risk/reward ratio that the doctors at Methodist don’t feel is worth it at this time.  From what I’ve read, the pleural effusion is not uncommon and usually harmless.

The other thing that popped up is that there’s a new bacterial growth in her lungs from the bronchoscopy on Monday.  They don’t know exactly what it is yet, but they are waiting for the daily culture reports from the lab.  In the meantime, they’re putting Anya on a new antibiotic until they determine the actual bacteria that’s growing.  The doctor told me that it may just be something picked up from the room air during the procedure.  I’ve seen them do the bronchs and sometimes the long black tube that they use to put into her lungs touches the bed or a glove or something that’s not fully sanitized, then they put everything in a jug and send it out to the lab.  The doctor said that so long as the bacteria doesn’t show up in the culture report then he’s not going to worry too much about it for now.  I think once Anya’s lungs heal, it’ll be harder for the bacteria to stick to the walls of her lungs. Right now, the white stuff and the mucus in her lungs make it easier for the bacteria to grow.

So, we’re moving along here.  The doctor said that Anya will most likely make the move over to Kindred by Friday or early next week.  Anya wants to stay for the weekend, at minimum.  We have a bronch scheduled for tomorrow and then another one on Saturday.  The main thing is that they’re still waiting for the inside of her lungs to heal.  They’re doing pretty much everything they can to facilitate that process.  Once they feel comfortable with the progress then I think they’ll get a little more aggressive with the physical therapy, weaning Anya off the vent, and ultimately sending us home.  I don’t feel as though we’re too far away from that point now.

Walking with her PT, Chris

Walking with her PT, Chris

Some friends from the weekend (from top left: Darlene, Colette, Sharon, Quentin)

Some friends from the weekend (from top left: Darlene, Colette, Sharon, Quentin)

Post Transplant – Days 14, 15, 16, & 17

Anya had a stent put into her pulmonary vein yesterday around 5pm. The pulmonary doctor told us about this problem a few days post transplant, but they didn’t make anything of it until Thursday. He told us that when the surgeon connects the new lungs to the body, sometimes the pulmonary veins heal in a way that causes some scarring inside the connection. When the scarring occurs, the blood flow to the new lungs is restricted. Normally this is not a big deal, but for someone recovering from a new lung transplant, it could be a big thing.

The main concern is that Anya’s new lungs aren’t healing as fast as they would like. With the stent, hopefully the proper blood flow will help speed up the healing process. The vascular team was able to lower the pressure gradient in the pulmonary vein from 12 mmHG to 4 mmHG (0 is ideal, which means unrestricted flow).  Anya is getting much better blood flow to the new lungs now.

As far as paralyzed diaphragm problem, it looks like that was just a false alarm. They did a sniff test on her and she passed, so it doesn’t look like her diaphragm is paralyzed. It’s just weak from 3 months of being on the ventilator pre-transplant. It will take some time to rebuild the muscles around the diaphragm.

The team also found a blood clot in her neck where the IV line was inserted, so they’ve been giving her an IV heparin drip for the past few days. Yeah, it seems like it’s been one thing after another post-transplant, but I think things are moving in the right direction.

So, it looks like we’re probably going to stay in the ICU for a little while longer.  That’s just my guess.  With the new stent and the lungs still healing, I don’t think the transplant team feels comfortable releasing her to Kindred just yet.  They told us that it may take some time for the new lungs to heal.  Maybe even months.

Marion and I were in the room when they did Anya’s bronchoscopy today.  The pulmonary doctor showed us the inside side of Anya’s new lungs.  On the right side, the lungs looked pomegranate colored with white patches here and there.  Kind of like what you would expect from a healing flesh wound.  On the left side, the lungs were mostly white in color.  It looked like that white layer that forms over a skin scrape as it’s trying to heal.

I don’t think the doctors are too concerned.  Anya’s breathing has been pretty good.  Her oxygen levels have never really desaturated post transplant, even while on the trach collar.  As a matter of fact, the other day as she was sleeping, the trach collar pulled over to the side a little bit, so she was literally breathing room air and her oxygen saturation levels were hovering right around 93%.  She was on the trach collar for about 8 hours today and she looked great.

So, it looks like we’re still very much in a hurry up and wait mode.  The infection, the pneumonia, the second surgery, the new stent…these were all unexpected events post-transplant, but the fact is, it’s only been about 2.5 weeks.  No one recovers from a double lung transplant in 2.5 weeks.  Anyways, we’re moving along here.  I’m not going to lie though, I’d feel a lot more comfortable once they discharged us from the ICU…