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; 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 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…