Post Transplant – Days 28 – 33 – Out of the ICU

Anya leaving the ICU with nurse Laura who has a 12 year old daughter with CF.

Anya leaving the ICU with nurse Laura who has a 12 year old daughter with CF.

Anya is finally out of the ICU!!!  The ICU nurse took us to our new room in a different part of the hospital on Saturday morning around 10am.  The new room is in Dunn Tower, room 407.  This is important because a little over 5 months ago on August 28, 2014, Anya and I flew to Houston Methodist in an air ambulance, knowing no one in Houston, scared, nervous, and not having  a clue what to expect.  Five months later, we’re in a room three doors down from where we started this journey.  The difference…Anya has new lungs now.  We’ve come nearly full circle.  There’s only one more stop before the circle is complete — home.

Anya is doing great.  A lot has happened over the past 48 hours.  Her size 6 trach was downsized to a size 4 “Jackson” trach, which is a smaller metal tube used for patients on their way home.  They also capped the trach.  It’s crazy because just 4 days ago, Anya was still on the ventilator and now she is breathing room air just like everyone else.  As a “security blanket”, they’re giving her 2 liters of oxygen through a nasal cannula, which will hopefully be gone after today’s scheduled bronchoscopy.  Her SATs have been great…95 and above.

Dr. Mankidy (pulmonologist) & Dr. Shakespeare (fellow)

Dr. Mankidy (pulmonologist; blue pants) & Dr. Shakespeare (fellow) in Anya’s new room

It’s been over a week since Anya has had a bronch.  They kept canceling the scheduled bronchs last week because her x-rays looked so good that they didn’t think that it was necessary.  As a matter of fact, one of the doctors told Anya that the x-ray of her lungs looked identical to the x-ray of a healthy person that’s never had a lung transplant.  It was great to hear him say that.

This morning, they are going to go in and check on how her lungs are healing.  No biopsy is scheduled.  They’ve done two biopsies so far and there has been no indication of acute rejection, which is a fairly common thing, but still unwanted, within the first year post transplant.  That is good news.

So, pending the results of this morning’s bronch, I think Anya is pretty close to being released from the hospital.  They’ve cut off a lot of the IV meds that she’s been on, like the heparin (blood clot), lasix (diuretic), amphotericin B (strong antibiotic) and they’ve removed most of the tubes and lines that she can’t leave the hospital with.

Anya with mom

Anya with mom

Anya still has a feeding tube.  The plan is to see if she can gain some weight by eating…if not, then she may have to setup the feed to run at night to give her some added calories.  She weighs 82.9 pounds as of Saturday.  After her first transplant, it didn’t take her very long to get back to a reasonable weight. She’s pretty confident that she’ll be able to pack on the pounds once they allow her to eat again, which should be soon.

A few other lingering things…the doctor told us that the mycobacterium abscessus avium infection (MAI) was cultured in one of the bronchs post transplant.  It’s not a cause of concern since the bacteria is sensitive to several antibiotics (bactrim & azithromycin), but Anya will most likely have to be on these two drugs for at least 6-12 months. They are going to add another antibiotic or two for several months.  The pseudomonas has not been cultured since they started treating it at day 5 post transplant.

In the next 3-6 months, Anya will need a surgery called Nissen fundoplication (fundo).  Fundo is a required surgery for most lung transplant patients these days.  GERD or acid reflux is a common condition with CF patients, including Anya, and what happens with GERD is that the stomach acid can aspirate into the lungs leading to chronic rejection.  To combat this problem, Nissen fundoplication surgery is performed so that the acid stays in the stomach and not in the lungs.  This surgery is something that the transplant team wants Anya to do before we leave Houston.  Usually 3-6 months post transplant.  We may be able to have it done back home, but we’ll have to talk to the transplant team first.  Also, there is a new procedure out there called LINX that is less invasive and easier to recover from.  We’re going to push for that, but insurance doesn’t always cover it and the transplant team may not approve of it.

So, that’s about it for now.  Like I said, Anya is doing great.  Her spirits are great.  She’s just happy that she can breathe again.  We watched the Superbowl in her hospital room last night and she’s happy that she got to watch another Superbowl.  There was a time not too long ago that she didn’t think she’d ever watch another Superbowl…

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…