I now have a home spirometer which allows me to go do my lung functions at home. It’s pretty darn close to my clinic numbers which is good. Now I am able to do my lung functions at home before my telemed appointments and send them in so they can see them. I had a video appointment (CF clinic) last week. It went well. Nothing major to report. My lung functions are holding steady at 35% (per my home spirometer).
The appointment was basically a Trikafta (new CF medicine) check up. I’ve gained weight which they like but I do not. Exercise is hard for me because I have a hard time breathing. Just walking the dogs is a work out for me. Our driveway is a hill so checking the mail is bad enough. The extra weight I have now doesn’t make it any easier either. I still eat like a CFer which means getting as many calories as I can because I burn them just breathing and existing with CF. With Trikafta it is supposed to thin out and clear out the mucus throughout the body. Which means I’m coughing less and coughing up less and the mucus in the digestive track is different as well. All good things.
All in all I am feeling decent so I’m just going with it. The last time I was on IVs was February/March, so it’s nice to be feeling good when I have been on IVs just about every 3-4 months. Working on pushing that time frame out as long as possible. I do still have my port that I use for IVs which is flushed every month.
The family is all doing well and surviving the coronavirus pandemic.
Until next time…