CF Happens

I’ve had people ask “how I’m feeling now that I started IVs,” “how long until the IVs start working” and “how long until I start feeling better” so I figured I’d make a blog post to help everyone to possibly understand how IVs work, for me.

Unfortunately, for me IVs don’t work like magic like they used to. I’ve been using oral antibiotics for 44 years and IV antibiotics for 31 years so it’s a given that because the bugs in my lungs become resistant to the antibiotics over time. I’m very limited on what antibiotics I can use. I’m allergic to quite a few antibiotics, so those are out. I give a sputum sample at every CF clinic appointment. That sample is sent to the lab. It “cooks” for a little bit to see what bugs grow in my sputum. Then they test a bunch of antibiotics on what grows to see what antibiotics “should” work.

I grow pseudomonas in my sputum currently and have for 30+ years. I have grown other bugs but they aren’t there at this time and haven’t been for a long time. With that said, antibiotics will never kill all the pseudomonas that lives in my lungs. CF causes thick sticky mucus therefore it holds onto anything and everything. My body produces the thick sticky mucus all the time, so I can never get rid of it all. So it’s just a vicious cycle.

Now back to “when will I feel better,” that’s a good question. I have no idea. It’s just a wait and see kind of thing. Antibiotics never make feel great like they do for “normal healthy people” when they get sick. I wish it was that easy for me.

Unfortunately, this is what life in “end stage CF” looks like. You eventually run out of options to treat exacerbations (being CF lung sick). When I say “end stage CF” I don’t mean I’m dying. “End stage” is the term when you are getting the end of the life of your lungs you were born with. When you are running out of treatment options (ie; antibiotics that work), getting lower lung function, lower quality of life, increase in frequency of lung infection exacerbations, need for oxygen, etc you are getting closer to needing a lung transplant, if that’s the route you chose to take. So no, I’m not dying, you’re stuck with me for a while longer. Haha

I’m hoping that the pleurisy pain will be gone by about Sunday or Monday with the higher dose of prednisone on board. As far as the IV antibiotics go, I won’t feel a ton better just because they never make me feel a ton better. It is what it is. I’m used to it, it’s just a part of having CF. As long as the pleurisy pain is getting better, my cough is decreasing, my wheezing is getting better and I’m not achy anymore, I’ll stay the course of 14 days of IVs at home. If I’m no better at the end of next week, I’ll call my CF doctor to let him know so we can come up with plan B.

I hope that helps explain that I don’t really have an answer to the question, “when will you feel better.” haha. I wish I did have an answer but I don’t. I just keep pushing every day. I’ll keep everyone updated as there are things to update. Thank you to everyone that has reached out to check on me. It is greatly appreciated.

Until next time…