CF Happens

Today marks 2 weeks of being off of prednisone…finally! It has been an adjustment for my body after being on different strengths of steroids for 5 weeks. It kinda feels like my body said, “WTF!! Why did you take the steroids away!?” Haha.

I did lung functions on my home spirometer to see where I am with no steroids in my system for 2 weeks. They are down to 29% which is no surprise to me. The 36% I got at my last appointment on the 8th, was a “fake” number with it being so close to the day I stopped prednisone. Steroids help open my lungs and airways up. Having the steroids in my system can give, and does give, skewed numbers on my lung functions.

With as big as a hit as my lungs took with the parainfluenza and all the asthma crap that the parainfluenza caused, I was pretty sure my new baseline (my “normal” lung function) was going to be closer to 27-30% now. So this is no surprise to me.

CF is slow progressing disease, so it’s a given that my lung function will decline over time. Of course I would love for that not to be the case but this is life with CF. I can’t change what CF does so I just roll with the punches and make the best of it.

I updated my transplant coordinator on how I’m doing since all the craziness happened. She said they are still good with seeing me in September, which is already scheduled. As usual, if I need to be seen before that I can always let them know.

NO, I’m NOT listed for lung transplant. I’m not at the point of needing to be listed yet. With where I’m at, in regard to my lung functions, if I drop lower and have more limitations in every day life and have fewer treatment options, we will entertain more serious talks about transplant.

Please remember just because I’m followed by my transplant hospital/clinic, this DOES NOT mean that I’m listed or ready for transplant. This is simply so that they can keep eyes on me for themselves. This way I can keep all my testing up to date if I were to have a rapid decline and need to be listed quickly as well.

I wish transplant was a simple process but it’s not. This makes it hard to explain to non CF people and/or anyone who doesn’t understand the lung transplant process. Yes, it would be easier to just say, “yep, I think it’s time, sign me up!” That’s just not even close to how it goes. Haha. My body is the one who is in control, so I just listen to it.

That’s all I’ve got for an update. I hope y’all have a great week!

Until next time…