I have been super busy and have been meaning to update you all. It has been on my “to do” list for a week but it keeps getting bumped. I have a few minutes to finally ‘get er done.’
The Rising Star educational night was really great! Talking about CF and all of what it entails is my, or at least one of, my elements. I love to educate people on CF. I always encourage people to ask any questions they have about CF and what it’s like to have CF. For those of you that were at the educational night, I hope that you all learned something and I didn’t bore you. I have said it before, and I will say it again, I am pleasantly surprised by the amount of fundraising and awareness that the East Tennessee Chapter of the CFF raises. I am grateful to be a part of it. My nurse said, “now that we know that you are willing to do these kind of things, get ready!” Challenge accepted!!
Now for the health update of the post…I finished 21 days of IVs on Friday the 7th. I felt good when finishing. Now the weather is playing games and can’t decide if it wants to be cold or warm and that is all in one day. Every October starts the lovely change of the season and the bi-polar weather which means my lungs aren’t happy. I do feel decent in general, it’s just the tightness and wheezing from the weather changes that gets me most days. That is one perk of having asthma on top of CF. I am not a fan of all the coughing, crackles and wheezing but I can’t seem to make it stop. LOL
Today was clinic to follow up from IVs and the 6 weeks of inhaled steroid to see where my lung functions were at. My weight is stable. My lung functions are pretty much the same as last time. They were FEV1 of 1.51/50%. Last clinic appointment they were FEV1 of 1.47/49%. I’m just happy they didn’t go down again. Like I said in a previous post my lung functions have gone down 10% in a year which I am not thrilled about but as long as they stay there and don’t go further I’m okay. At the last clinic we did a lot of testing and brainstorming as to why they have decreased so much. My IgE level was fine, the level that shows if your body is reacting to something in the environment. My lung CT showed nothing spectacular, only my normal “cystic cavities.” My sinus CT was also unimpressive, only showing scar tissue from previous surgeries and no polyps. Then of course I conveniently happened to be on IVs in between clinic appointments.
Today we brainstormed some more and decided to add a few more inhaled things to my regimen in hopes that it will help extend the amount time in between rounds of IVs. First off we added Tudorza twice a day which is another inhaler in powder form. We are hoping that it will make the asthma component in these rebellious lungs of mine behave. Next up was the TOBI podhaler twice a day, an inhaled antibiotic that alternates every 28 days…28 days on the medicine then 28 days off of the medicine. I have been unable to take any inhaled antibiotics in a few years because they aggravate my asthma, lucky me. We are trying the TOBI podhaler because it is a different form of the medicine. It is a powder instead of the liquid solution. I was actually on the drug study for TOBI years ago and stayed on it after it was approved but about 10 years ago I had to stop taking it.
This makes it Duo Neb, Pulmozyme, Symbicort, Tudorza and TOBI podhaler for the things I inhale during treatments. I have an appointment in 8 weeks to see how I am doing on this regimen. My goal is to stay off of IVs during the holiday season. That means I have to make it at least another 34 days. I guess I’ll group my birthday into the holiday season too so make it 73 ish days.
Until next time…