We had our dermatology appointment last Thursday and our 3-month checkup with the transplant team this past Monday. Both appointments went well.
At the dermatologist, Anya had two spots on her scalp biopsied, both the size of a dime. The reports came back on Monday night and the dermatologist determined that both spots were “pre-cancer”, which means no need for surgery. We scheduled an appointment for next month to go back and “burn” them off with liquid nitrogen. Phew! We were very worried about one of the spots pre-transplant, mainly because we thought that they wouldn’t list us knowing that Anya might have a new skin cancer spot.
We told the doctor about the new cancer spots at our clinic visit on Monday and they’re going to monitor it and maybe switch one of the immunosuppressant drugs to a different one (Cellcept to Rapamune). No one really seems to know what to do in these situations including the doctors. What I do know is this, Anya developed chronic rejection in 2012 about a year and a half after the transplant team over at Inova Fairfax changed one of her immunosuppressant drugs. I’m still trying to figure out which ones. This time around, I think we’re going to go with the old saying, “if it ain’t broke, then don’t fix it”. Once chronic rejection starts, it’s hard to stop, but with the skin cancers, as long as we stay on top of them, then from what I’ve read, they can be controlled.
Our 3-month checkup went pretty well too. Anya’s lung function went up to 58%; 16% higher than what it was 3 weeks ago. This is the highest that it’s been in probably 3 years. For her 6 minute walk, the lowest her oxygen saturations dropped to was 93%, so officially there is no more need for oxygen. She hasn’t been using oxygen during the day for a few weeks now anyways.
Also, the doctor finally gave us a “go home date” of mid to late June. Yay! He was very impressed with how well Anya was doing. He discontinued a few drugs and ordered the IV central line to be taken out next week.
After this IV line is taken out, there’ll only be one more line left to take out, which is the feeding tube. The doctor wants Anya to go up to 115 pounds before they take it out, but Anya negotiated it down to 105 pounds. She weighs 89 pounds right now, so we have a little ways to go.
So, both appointments went well. The doctor ordered a bronchoscopy for Friday just to see how things are progressing inside of her lungs. There’s still a little bit of concern with the left side of her airway narrowing. He mentioned the stent again, but more of a “at some point in the future” instead of a “need to put the stent in now” type of way. He seems to think that Anya’s lung function could improve even more with the help of a stent. We’ll see what they think after Friday’s bronch.
What else…biopsies of the lungs have all been negative for acute rejection since transplant. Culture reports have all been negative since February. Bloodwork looks great. All good great news.
I guess it’s time to enjoy Houston. We’ve been waiting for this moment ever since we arrived here. Suggestions?