Anya’s still not listed yet.
The transplant surgeon came in last Tuesday and cleared Anya for transplant with some stipulations:
- keep BMI above 15
- walk daily
- trach collar daily
Anya weighed 80.4 pounds on Friday, which put her BMI at 15.7. She’s been walking at least 880 feet every day, except Sundays when the physical therapists are off. As far as the trach collar, Anya’s CO2 levels went up to 85 last week (normal 35-45), so she’s been on vent support (SIMV) since Friday. I talked to the pulmonary team about this and they told me that her physical strength (walking) is more important than weening off of the ventilator, so they are not as concerned with being on the trach collar daily. We are still going to try to get Anya on the trach collar for about an hour or two daily, but we need to make sure her CO2 levels are lower than the 85 that we saw on Friday. Being on the trach collar is important because it helps build up the muscles used to breathe. The downside of the trach collar is CO2 retention.
The liver team came in last Wednesday. They reviewed her liver biopsies from Fairfax (June 19th) and Duke (March 28th), along with the pathologist reports. The only thing they were missing was the gradient numbers from her latest liver biopsy. I sent them the medical records that I received from Fairfax Inova before I left and they were happy with those numbers (6-7 mm HG). Anya has stage 3 fibrosis in certain parts of her liver (stage 4 is cirrhosis). Cystic Fibrosis is known to cause damage in other organs, like the pancreas, liver, and intestine. Anya’s pancreas and intestines are fine, however, her liver was the main concern and reason why Duke, UPMC, and Cleveland Clinic rejected us for a 2nd transplant. The liver doctor over at Houston Methodist described her liver as having “spotty cirrhosis”. Because the two liver biopsies were inconclusive for full blown cirrhosis, the doctors had to use the gradient numbers to determine if she did indeed have cirrhosis or not. Based on Anya’s gradient numbers, the liver team believes that her liver will be fine for transplant. The liver team fully cleared Anya for transplant on Wednesday.
So, what’s the game plan for now? Well, the good news is that Anya is fully cleared for transplant by all teams. Our transplant coordinator sent all of our paperwork to the insurance company on Friday to get proper approval for transplant. Lung transplants usually cost between $500,000 to $1,000,000. If all goes well, then we should have insurance approval by the end of the week.
Once approved, then our transplant coordinator will send our application to the United Network for Organ Sharing (UNOS) to get Anya officially listed for a lung transplant. Once listed, UNOS will give us a Lung Allocation Score (LAS) to determine how high Anya is on the list. The LAS ranges from 0-100, with 0 meaning that the candidate is not yet eligible for transplant, and 100 meaning that the candidate needs a transplant today. Although Anya is not officially listed yet, the nurse practitioner told us that Anya’s score will most likely be around 60.
I’ll share some more information on median wait times, lung transplants performed, and transplant candidate numbers after we get word from the insurance company. Just FYI, the transplant will most likely not happen immediately. Being listed is just the first important step in the process.