CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • Life update (osteoporosis and perimenopause…oh what fun)

    I hope everyone had a great Thanksgiving. Mine was fantastic! I thought I’d update on a few things since I finished the oral Cipro and prednisone.

    I am feeling better than I was when I started the antibiotics and prednisone. I’m coughing less and wheezing less thankfully. I do still have to frequently push my air out to force a deeper cough to try and loosen the rattle and wheeze. It doesn’t always work but I keep trying of course.

    My bone density results showed that some areas have gotten worse and progressed to osteoporosis. Other areas showed a little improvement but still considered osteopenia. I have already taken the oral (once a week) Fosamax for the recommended 5 years to help with osteopenia and hope it didn’t progress to osteoporosis. There’s no real research that shows taking the Fosamax longer than the recommended 5 years does much. My doctor wants me to do the Reclast infusion once a year. For that I’ll go to the infusion clinic where I go to get my port flushed once a month. It only takes about 10-15 minutes to infuse. I’m waiting for insurance approval and for the infusion clinic to call me to schedule the infusion.

    Next order of business…I had an appointment with my gynecologist on Friday to discuss perimenopause/menopause. I’ve been experiencing many of the perimenopause symptoms like…hot flashes or as I like to call them “hot seasons” because when I’m hot I’m really hot and it lasts forever, peeing more frequently, trouble sleeping, waking up early (I’ve become a morning person!), trouble with memory, hair loss/thinning and of course messed up periods (I had 3 periods in 7 weeks and now I haven’t had one for 4.5 weeks).

    I bring up perimenopause/menopause because it is very common for women with CF to go through menopause at an earlier age than non CFers. I’m 43 and here I am!! There’s not a lot of talk about menopause and what to expect. Yes, everyone knows/talks about hot flashes, messed up periods and mental health changes but other than that you don’t really hear much.

    I got my lab results back and they do show I’m in perimenopause. I have a follow up appointment at the beginning of January to discuss the next steps. We did talk a little bit about it at my last appointment. She did say that the typical treatment is to do a low dose birth control to help regulate your period to help the transition into menopause smoother. I said as long as taking birth control won’t “trick” my body into having a period when it shouldn’t be then I’m good with it.

    I take this getting older thing with a smile because I didn’t think I was going to be around long enough to experience menopause. Most women complain about getting old…the grey hairs, the wrinkles, the reading glasses, menopause, etc BUT that’s not me! I’m LOVING getting older and being able to do all the things that I didn’t think I would get to go through. As you know, I love my birthday because it means I’m still alive to celebrate them. Many people don’t get the chance to grow old so make sure to be thankful to be alive.

    I’ll update after I get the Reclast infusion and I make a decision on what we’re going to do for the perimenopause as far as what birth control, etc.

    Until next time…

  • Well that didn’t last long

    I waved to white flag this morning and contacted my CF nurse to ask for antibiotics and prednisone. Sunday I woke up with a bad headache at 4am. It was on the top of my head and in my forehead. My sinuses in my forehead are basically non existent now possibly from all the surgeries and all the sinus issues I had as a kid. Sunday night I did a sinus rinse just to make sure there wasn’t anything hanging out in there. There was nothing alarming in there as I suspected. Monday morning I woke up super snotty and my husband said I was snoring all night. I took Mucinex and DayQuil throughout the day to try and help with the congestion and hoped for the best. I have also had a little bit of a sore throat from drainage but there’s no visible drainage in my throat.

    This morning I’m still very snotty and now I’m coughing a lot. Yes, it has in fact invaded lung land. UGH!!

    My CF doctor was able to see me at 9am for a Telehealth appointment. I did lung functions on my home spirometer before my appointment. My FEV1 was 30%/.83L, so it’s down a tiny bit but nothing to be concerned with. We decided on 14 days of oral Cipro, 13 days of prednisone (40mg for 3 days, 20mg for 5 days and 10mg for 5 days) and phenergan (promethazine) for possible nausea that the Cipro usually causes. The phenergan is an antihistamine and antiemetic to help with the nausea. Zofran doesn’t usually help me as well.

    The last time I had a sinus issue I ended up at the urgent care to get started on antibiotics because it was a Saturday. I ended up doing 2 rounds of oral antibiotics (I believe) and then ended up on IVs at home. I went ahead and contacted my doctor in hopes to avoid that happening again. With that said, oral antibiotics rarely work any more and I end up on IVs so we’ll see how this goes. My goal is to make it through an upcoming trip (in 9 days) to KC for my dad’s 70th birthday celebration without IVs. I’ll do all the other stuff I need to do as well like sinus rinses and nose sprays in the meantime.

    Halloween always starts my “sick season.” Growing up it was always up in the air if I would get to go trick-or-treating because it never failed I was sick on Halloween. As the years went on I had more of a fall/winter sick season and late spring into summer sick season, so it’s basically all year now. Here’s to hoping I caught it before it was going to get bad but I don’t really have the faith that my lungs will play nice because let’s be real, it’s my lungs we’re talking about here. As my favorite hash tag on Instagram says, #mylungsareassholes!!

    Until next time…