10:29pm
We did what felt impossible: we went to a follow-up appointment for both the transplant clinic and the CF clinic in one day, along with minor satellite visits that always orbit the big ones, and nobody threatened to pitch Nathaniel back into the hospital.
His lung function is down quite dramatically based on the respiratory tests but they think that’s more muscle wasting / weakness than it is infection or poor health, so they want him to keep eating and doing PT to get stronger and stay healthy. His transplant numbers for his liver are exactly where they should be and his kidneys are even better than before all the shenanigans began. They said “keep doing what you’re doing”.
I am immensely relieved.
Tomorrow: we keep doing what we’re doing, trying to get a little better at it every day. And then we keep that up for the rest of our lives. Piece of cake, right? 🤣
Sounds like the system you both have planned is working very well. Keep up the good work. Don’t forget to take some time to relax and get some rest.
Love hearing your medical status Nathaniel. Keep up the medical self care,
Love ❤️ You Both
Great news to start the New Year! So impressed at the way you’re handling all this.
Sometimes it’s a bit scary that everything is going well- try to relax a bit & enjoy it. You both are fantastic!