Yes, we’re still here.
The big news is that Anya’s case is going to be reviewed again next Tuesday, November 4th. There is a chance that Anya will get listed on that day. The head of the pulmonary team says that he is going to try his hardest to get her listed. On the flip side of that, the head of infectious disease team says “no promises”, but there will definitely be a discussion. We’re keeping our fingers crossed.
At this point, we have no clue what to expect. We really thought that we’d get listed at Duke 7 months ago. That was SEVEN LONG MONTHS AGO. We can’t control what they decide, so we’ll just keep moving forward with our rehab program and trying to get Anya in the best shape possible for another transplant.
Anya has been such a trooper. I can’t imagine what she’s going through. Not just physically, but mentally. In and out of hospitals since July, confined to a bed for most of that time, having nurses, respiratory therapists, doctors coming in and out of the room, poking her with needles, taking her blood pressure, x-rays, bronchoscopies, administering IV antibiotics at all hours of the day, non-stop…she is most definitely the strongest person that I know. Then, imagine going through all of this while breathing through a straw. Sigh.
Not much has happened over the past week and a half. The biggest thing has been Anya’s anxiety. For a few days there, she was waking up several times a night with panic attacks. She explained it to me like she was being strangled. The doctors checked everything, including blood tests, CO2 levels, blood pressure, ventilator settings, x-rays, and everything “looked fine”.
She’s still getting good volume on the ventilator, which means that she’s moving air in and out of her lungs at a good rate. Her CO2 levels have remained unchanged around 70 mmHG. Her SATs have stayed above 90%. And her X-rays have showed no degradation. So, the docs and respiratory therapists have been attributing most of her recent breathing problems to anxiety, which is a very common problem amongst pre-transplant patients. The anxiety seems to be getting better though.
Anya’s had some good days and some bad days, but I feel like she’s been getting stronger every day. Some days have been harder than others, but the hard days usually pass. Yesterday was a good day for her. She did her daily walk and after two laps around the floor (880 feet), she told the physical therapists that she wanted to go around one more time, so she walked a total of around 1350 feet, while only stopping twice! That’s a record for her. And they weighed her yesterday at 77.4 lbs. That’s a gain of over 5 lbs from her lows. She even managed to eat a Fage Greek yogurt a few days ago. It didn’t taste all that great to her, but we’ll take the added calories any time.
Another bit of good news is that my parents and sister drove my car down with the dogs last Friday (Thanks mom, dad, & sis!). I brought the dogs over to see Anya on Saturday. It was the first time in 3 months that she’s seen the dogs. I captured the moment on Instagram:
So, things are moving along here. We just need to keep this going until Anya gets listed.
Also, I wanted to thank everyone for their donations. The hospital bills are just starting to come in. I’ve never had to deal with so many bills before because I wasn’t with Anya for her first transplant but I can see how dealing with insurance and bills can drive someone mad. The donations will go to good use. It will allow us to focus on getting Anya stronger, instead of worrying about pile of bills coming in. Thank you.
That’s about it for now. #StayStrongAnya