CF Happens

Sometimes in life, CF happens…pun intended.

recent posts

  • 3 Month Pre Transplant Check Up

    First stop was for labs and chest X-ray. All labs were good and my chest X-ray was unchanged.

    Next up…6 minute walk. I walked 1,222 feet today with no need for oxygen. I believe I walked around 1,050 feet last time, I’d have to look back.

    Next up…lung functions. My FEV1 was 0.82L/31%. I’m holding steady.

    Last stop for the day…appointment with the doctor. I’m doing well and holding steady. I don’t have to come back for 6 months!! That will be a nice break from every 3 months. Of course, if I need to be seen sooner, I will call them.

    Thursday I am seeing the allergist to do antibiotic allergy testing. They want to narrow down my antibiotic allergies because I’m allergic to quite a few. They want to make sure they have a list of antibiotics that can be used post transplant. There may be antibiotics that I’m allergic to that could be a last resort choice if needed. They could possibly try to desensitize me to them along with pre-dosing with Benadryl to make my body not react to them if I were to need them in the future.

    I’ll update after my appointment with the allergist on Thursday.

    Until next time…

  • Finally Saw The Rheumatologist Today

    I have been having arthritis pain for a very long time. The pain got much worse when I was finally able to stop needing Prednisone all the time back around October, I believe. It took a while to get into the rheumatologist for a new patient appointment but today was the day!

    I liked the doctor. While he was examining me, he was squeezing my joints in my hands, wrists, knees, shoulders, etc. (ouch!), he noted joint swelling as well as tenderness/soreness. He was able to make a quick diagnosis. I do, in fact, have Cystic Fibrosis Related Arthopathy (Arthritis). It mimics rheumatoid arthritis but it’s not really labeled as rheumatoid arthritis. It does have the same joint pain and swelling, etc. Due to it being related to CF, it makes this a different class of arthritis in a sense but mimics and looks like rheumatoid arthritis.

    Here is the treatment plan…He prescribed a medicine called hydroxychloroquin (Plaquenil) 300mg once a day. This is a rheumatoid arthritis medicine. Unfortunately, this medicine doesn’t start to work right when I start taking it. It can take up to 3-6 months to start to feel the full effects of it. So fingers crossed that it does in fact help and I don’t have any of the noted side effects. As you know, my body doesn’t like to play nice or by the rules, so here’s to hoping that my body accepts it and it helps! What’s another 3-6 months of pain, right? I mean, I’m in some sort of pain all the time anyway.

    He also prescribed a different anti inflammatory medicine called nabumetone (Relafen) 500mg twice a day as needed for the arthritis pain. I am stopping the anti inflammatory, Meloxicam, that I was taking for the arthritis pain. It’s not doing much anyway.

    I have an appointment to see him again in 3 months to see how I’m doing on both medicines. Obviously, If I have any issues before then, I will call and get an appointment before the 3 months.

    Until next time…