CF Happens

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

recent posts

  • 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…

  • Clinic visit

    Looks like I forgot to update back in October. I wasn’t feeling good at the beginning of October so I did a round of oral Levaquin for 14 days and prednisone. It didn’t really do much but I held on until last week. I started with a sore throat and sinus drainage on Thanksgiving day. I went to the walk-in clinic last Saturday. It is always a gamble going to doctors that don’t know me or my CF history. I started another round of oral Levaquin (Saturday) and prednisone (Monday). I have a sinus infection that has made its way to my lungs. Today I had a regular CF clinic check up. My lung functions are pretty steady considering I’m sick. My FEV1 was .93L/34%.

    My lungs sound junky, especially in the lower lobes. We decided to make a plan since I will be out of town until the 12th. I will finish the Levaquin and prednisone at the end of next week. If I’m no better by the time I get back in town I will start home IVs. I will do cefapime which is a push (just a syringe of medicine that is pushed in over 10 minutes) every 8 hours for 14 days. I will not be surprised if I end up on IVs because it’s been awhile.

    I have been having random bruising the past few months so he put in orders for labs if/when I start IVs since they will be drawing labs anyway. My labs were all fine in September but things change. I’m also being referred to an allergy doctor to talk about doing asthma medicine shots, like Dupixent. My asthma has been a problem a lot lately. I’m hoping that will help with my wheezing and shortness of breath.

    The national CF conference was not too long ago and they discussed doing an abdominal ultrasound every 2 years as a maintenance test just like the bone density scan. Mainly to look at the liver because the liver is not always good in people with CF. I think that sums up life to this point. I will update about how I feel and if I end up doing IVs.

    Until next time…