CF Happens

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

recent posts

  • Christmas in the Club

    First of all I hope you all have had a great Christmas so far. Now onto other business.

    Yes, you read the blog title correctly. I’m in the hospital aka “club med.” Now let me fill you in on the details. As you know I was sick and on oral Levaquin and prednisone for 2 weeks. I finished those on the 10th. I had a decent week after that. After that I started getting more short of breath so I upped my breathing treatments. Yesterday I was even more short of breath and did even more breathing treatments with no relief. We were hosting dinner for Christmas Eve so I pushed on through like I do. After everyone left and I was cleaning up I had to have my husband finish cleaning up so I could do another breathing treatment. Well after the treatment I was still not breathing great and short of breath just sitting on the couch.

    I made the decision to throw in the towel and go to the ER at 9:30pm on Christmas Eve night. Let the adventure begin! It was a relative smooth process which I was surprised with it being Christmas Eve. While in triage in the ER, I had a bunch of labs drawn along with the dreaded brain swab for all respiratory stuff. I later found out that it did sore influenza A. I also had a chest X-ray and a chest CT. I did 2 doses of IV antibiotics while I’m the ER, meds that I don’t usually use. Then the pulmonary doctor on duty came to see me while I was still in the ER. We discussed doing cefapime like my CF doctor talked about me doing if I wasn’t any better after doing the Levaquin and prednisone. I, of course, asked to do steroids more so specifically IV solumedrol as well because I’m very tight and short of breath. He said that’s fine. Also, when I came in my O2 sats we’re at 90% so I’m on 3L of oxygen right now to help give me a boost. I’m sitting around 97% with O2 on. I take it off to go to the bathroom because it doesn’t reach and I drop again.

    I got to my room at 1am. Of course I had a parade of people in and out. Finally got my port accessed at 3am. I slept from about 4am until 6am when my nurse was in drawing more labs and hanging the new antibiotic cefapime. I think I was able to get maybe another hour and a half until it was shift change and people started coming in.

    Later another pulmonary fellow came in. He was not so keen on giving me steroids. I’m hoping my CF doctor talks some sense into him when he’s able to talk to him. Haha. It’s really hard going into the hospital on a weekend and Christmas Eve to boot when you have a chronic illness and know what you need but your doctor aren’t there. I may not get started on steroids until tomorrow. I hope that’s not the case though.

    I’ll be here for at least a few days to get the antibiotics on board and hopefully the steroids so my lungs can get open. As usual I hope to be out by Friday. I hate weekends in the hospital. I’ll keep you all updated as things go. Thank you for all your love and support.

    Until next time…

  • Appointment with Allergy Doctor

    Today I had an appointment with the allergy doctor to discuss injectable asthma biologis, which is asthma shots. I have had asthma since I was a kid. It has really been bothering me for probably the last year. After getting my most recent labs and lung functions, along with my previous allergy skin testing from back in 2014 (I think) she decided to prescribe Dupixent. She gave me orders for additional labs to check my eosinophils level, a few immunoglobulin levels, pneumococcal titer and tetanus titer. I filled out the paperwork to get the Dupixent approved by insurance. The Dupixent company will mail the medicine to me when it is approved. It could take up to a month to hear if it is approved. I learned that Dupixent is not only for asthma treatment but also for nasal polyps. I had many sinus surgeries for polyp removal as a kid. My last sinus surgery was in 2001, I was 21. During the last surgery they also made “windows” in my front bottom sinuses. Basically they drilled holes in the bone to make drainage easier so they wouldn’t get packed again. It was a rough recovery from that one. My face hurt for a long time after. My sinuses have doing well since that last surgery. The Dupixent will also help with inflammation in my sinuses as well as inflammation in my lungs. The hope is that the Dupixent will decrease my wheezing, tightness and shortness of breath. I would love for that to be the case. I’m over always being out of breath and my lungs feeling tight. I do have crappy lungs anyway with 35% FEV1 but any help is appreciated. When the Dupixent is approved I will call the allergist and make an appointment to have them show me how to administer it.. It is similar to how an epi pen works as far as it being in a “pen” and you inject it in your thigh. It is every two weeks. Here’s to hoping the approval is smooth sailing!

    Now for an update from my last post when I was sick. I finished the oral Levaquin on Saturday and finished the prednisone on Tuesday or Wednesday. I am feeling better thankfully. I guess I’m back to my normal crappy. For now, no home IVs! I’m due to see my CF doctor again in the beginning of March for a regular 3 month check up. As always, if I need to be seen before that I will call. I’m hoping I don’t need to call of course.

    We just got home from visiting family and friends for the last 10 days. It was great seeing everyone but man was it nice to be back home and able to sleep in our own bed and just to be back in our own space. We sure do love East Tennessee. I’m thankful the Air Force brought us here. I think that is all I have to update. Thank you for all your love and support as always!

    Until next time…