My CF nurse called today to check in and see if I needed another week of IV antibiotics. I told her I’m as good as think I’ll get and that another week of IVs won’t do anything. My doctor wanted me to do home spirometry (lung functions) and to send it in so he can see it. My FEV1 was 32%! So I’m back up to my baseline between 30-35%. My last days dose of IVs will be my 10pm dose tomorrow night. I can then deaccess my port and be free!
I’m not as tight or wheezy as even I went into the hospital. I was up at 4am wheezing so I did a breathing treatment and stayed up until my 6am dose of IVs. I’m also not as short of breath so I’ll take it. I’ve been able to do more around the house, like cleaning. I do still have to take breaks like I usually do but I’m about to push through.
I’ve had some people ask about lung transplant and where that stands with having my lung function having been down to 21%. I’m still not ready for transplant yet. To be reevaluated for transplant, my lung functions would have to be 29% or under (steadily) along with other things like being resistant to IV antibiotics meaning they are having no effect on my lungs. IV antibiotics already are not as effective as they used to be when I was younger. I don’t bounce back like I used to. There are still different antibiotic combos they they can try for me with the hope they will help. We aren’t out of options quite yet.
Like I said before, you learn to adapt to lower lung function as it slowly goes down. The reason I noticed such a difference in my breathing when I went to the hospital was because it had dropped like 12% rather quickly. Yes, new lungs seem like a solution but there’s more to it than just getting new lungs. It’s a lot of hard work getting listed and enduring transplant. I will cross that bridge when the time comes. I’m still not mentally ready for transplant. It is so scary! It’s a journey for sure. Yes, I would get ready real quick if I declined quickly and had to be listed sooner than I would like. There are a lot of moving parts that have to be figured out when I do list for transplant. We will figure it all out in due time though. I know I have a lot of support with my family and friends. I will make it!
I have a telehealth appointment with my CF doctor on Friday the 20th for a check up after finishing IVs. I will do lung functions again and send them in the day before my appointment for his reference. I’ll update after that appointment.
Oh, and I got word that I was approved for Dupixent, the asthma medicine. I have an appointment with the allergy doc/nurse on the 18th to do my first injection in the office so they can teach me how to do it. The initial dose is 2 injections and then it’s 1 injection every 2 weeks. It’s in a pen injection like an epi pen is. I’m really hoping this helps my asthma and I won’t get as short of breath. We shall see.
Until next time…