CF Happens

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

recent posts

  • Yearly (Pre) Lung Transplant Clinic Check up

    Transplant check up days are always long. I just have to say…I appreciate my husband so freaking much for being my person! I am so thankful that he’s with me through everything when it comes to my health. He’s my safe space and my “safety blanket,” so to speak.

    First stop was for labs and chest X-ray. All my labs looked really good. My chest X-ray showed my normal volume loss in my upper lobes.

    There is some change in my upper left lobe. There is a slight increase in nodules, compared to my last chest X-ray that I had last September. The nodules are most likely attributed to reoccurring infections and inflammation. The right upper lung is unchanged.

    Next stop was for lung functions and an ABG (arterial blood gas). My ABG was good, within the range it should be. My first test was 30% (FEV1), my second and third tests were both 28% (FEV1).

    Next stop on the fun day of appointments was my 6-minute walk. The goal is to walk more than 1,000 feet. I walked 1,116 feet. I didn’t need any oxygen and I didn’t need to take any breaks. All great things!

    Last stop was clinic to see the doctor. We talked about all of asthma issues I’ve been dealing with. He’s not as convinced as my CF doctor back home is that it’s mainly asthma causing the issues. He did say with Tezspire being my 3rd asthma biologic I’m trying, it should give us a better idea if the eosinophilic asthma is a/the major culprit.

    It could just be the trifecta of CF, asthma and bronchiectasis all causing issues. With the decline in my lung function as well as not getting my lung function back up to what was my baseline/normal of 32% (FEV1) shows a descent enough decline. I’ve been averaging between 25% and 30%.

    He would like for me to go down from 5mg of prednisone to 2.5mg of prednisone soon. Then of course work at getting off prednisone all together. It’s not an ideal thing for me to be on prednisone long term (pre transplant).

    When I am totally off the prednisone, he wants me to do lung functions and a 6-minute walk to see where I’m sitting at without the prednisone in my system. He also is curious how the Tezspire will perform without prednisone in my system.

    He wants to see me back in 3 months. When I go back in 3 months I’ll do all the normal things I do with every time I have my (pre) transplant appointments which are labs, chest X-ray, lung functions, 6-minute walk and see the doctor. He wants to add in a chest CT in as well. Hopefully we can go back to every 6 months after the next day of appointments.

    I think that covers everything. It’s a good thing I have my husband at these appointments with me because I remember half the stuff. Haha

    Until next time…

  • Depression is a B!TCH!!

    Many of you don’t struggle with mental health issues like depression and anxiety. I have clinical depression, situational depression, seasonal depression (aka winter blues) and generalized anxiety disorder (GAD). I’m laying it all out there. Haha. My depression is managed with antidepressants and my anxiety is managed with anti anxiety meds as needed. I also see my counselor every 2-3 weeks. I absolutely LOVE my counselor. I’ve been seeing her for 5 years now. I’m very thankful for her.

    As you can imagine being a person with an incurable genetic disease like CF, one might develop or have depression. Not to mention, if depression and anxiety are in your family history…talk about a double whammy!

    There have been some pretty dark times, like when my mom passed away. I didn’t know if I was could make it to the other side at that time. Thankfully in did. A lot of times I don’t know how I do it, I just do it.

    Anyway, the reason I bring this topic of depression up in this post is that my depression has not been playing nice lately.

    I’ve been really missing my mom A LOT. This coming January 19th will be 10 years since her passing. It doesn’t seem possible that it’s been that long already. I have felt every one of the 3,527 days it’s been so far without her.

    Yesterday, I was at my aunts house to watch the Chiefs game with family. It hit me harder than I thought it was going to without my grandpa there. This is the first time we’ve been home to visit since he passed way 7 months ago. He would have been there ready to watch!

    I wasn’t able to travel home for his funeral services because I had just had my back surgery 3 weeks prior. I’m sure there’s multiple layers as to why it hit me hard. He and I were really close.

    Next up on the depressing train…my health this year has sucked big time. My lungs have been their normal asshole selfs BUT with a dash of extra assholery in the mix.

    I’ve been more worn out and tired than I usually am in general this past calendar year. It takes a lot out of me when I’m having a hard time breathing. Then when I get out of breath it takes me longer to recover which is so frustrating. When it’s your every day life, you just want a freaking break! You just want to breathe “normal” for once.

    So for everyone that thinks that I’m always positive and happy go lucky. Guess what…THAT’S NOT THE CASE! This is a prime example of that.

    The saying, “fake it until you make it,” is well known in my house and life. After 45 years of feeling like crap physically and dealing with depression, I’ve learned to “set it aside” to do what I need to get done, to include peopling. So you would most likely not notice that I’m feeling “off,” because I’m so used to just doing what I have to do.

    I don’t want to miss out on life’s experiences and making memories, therefore I keep on keeping on as best I can.

    Anywho, this is me being real and wearing my heart on my sleeve. I wish there was a quick fix but guess what, there’s not. No, I can’t just “snap out of it.” Boy do I wish I could “snap out of it” but that’s not how depression works.

    If you don’t deal with depression, anxiety or other mental health issues, it most likely doesn’t make sense. That’s ok if that’s the case. Just be sensitive to those of us that do deal with these things. If we could not have any of them, we would be quick to offload it!

    Until next time…