CF Happens

Sometimes in life, CF happens…pun intended.

recent posts

  • 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…

  • Tezspire…Ummmm….What the heck is that??

    My CF doctor, along with the CF clinic pharmacist, have been wracking their brains on what to do with me…in terms of my severe asthma that is. My severe asthma has been the main culprit to most of my issues in the last…hmmmm…well, forever…but a lot of this calendar year.

    First, let me explain what makes my asthma in the “severe” category. The type of asthma I have is eosinophilic asthma. This type of asthma is characterized by elevated levels of eosinophils (a type of white blood cell) in the airways, often associated with severe asthma. This is not your “run of the mill” allergic asthma, seasonal asthma or exercise induced asthma. The three types of asthma I just listed are the most common types of asthma, per se. Allergic asthma and seasonal asthma are triggered by allergens like pollen, different trees, grass, weeds, dust mites, animal dander, mold, seasonal changes, etc. Exercise induced asthma is just that, your airways and lungs get irritated and tighten and get inflamed as you exercise.

    When you throw CF on top of my severe asthma, along with the state of my CF progression AND the fact that I’m working with anywhere between 25%-30% lung function, it’s not the greatest combo to treat.

    SIDE NOTE: I AM allergic to animal dander, dust, mold and seasonal changes do affect me BUT that is not necessarily what triggers my asthma in every instance. Once again, this is what this ol’ body of mine likes to do…which is NOT what it “should” do. haha

    Ok, now onto the purpose of this update. I’m going to talk about asthma biologic medicines. They are an injection by a pen. They look just like what an EpiPen or an insulin pen looks like. Asthma biologics are a class of medicines used to treat moderate to severe uncontrolled asthma. They work by targeting specific inflammatory pathways in the airways, reducing inflammation and improving asthma control. Or, that’s the hope anyway.

    Many people have heard of, or seen commercials for Xolair. Xolair is one of, what I would call the “most common” asthma biologics. It is to treat moderate to severe asthma, more of the allergic asthma side of things. Theoretically, this particular biologic would NOT be one that would/should work for my type of asthma. I have NOT taken Xolair.

    The next one I’m going to mention is, Dupixent. Dupixent is to treat moderate to severe eosinophilic asthma as well as if you are dependent on oral steroids like prednisone. Meaning that you need prednisone to help your asthma be more under control. I’ve been on A LOT of prednisone over the last 6-9 months. I was on Dupixent for 1 year with no improvements or noticeable changes in my asthma and asthma symptoms.

    Next up is Fasenra. Fasenra is to treat severe eosinophilic asthma. I have been on Fasenra for the last year with no improvement or change in my asthma symptoms. If anything, my asthma has been more uncontrolled.

    So here we are with the meaning behind the title of this blog post. My CF doctor and the CF clinic pharmacist put their big educated brains together and decided the next step to try is the asthma biologic, Tezspire. Tezspire is to treat severe asthma. It is a newer biologic medicine. Tezspire targets a broader range of asthma types to include eosinophilic and non-eosinophilic asthma. Tezspire works by blocking TSLP (thyme stroll lymphopoietin) which is a key inflammatory chemical, to reduce airway inflammation in the broader asthma pathway. Ummm yeah, that was a lot of medical jargon, that I don’t even really know what those words all mean. haha. Basically, Tezspire is supposed to block the chemical that causes the inflammation in the airways/lungs in hopes that it will improve my asthma symptoms. Which would mean needing less to no prednisone tapers, improve my tightness, wheezing and excessive shortness of breath.

    I had my first injection today with no problems or side effects. This injection is every 4 weeks. I will get my second dose at my next CF clinic appointment on October 2nd. Then I will be doing the injections at home every for 4 weeks. The goal is to try the new biologic (Tezspire) for at least a year to give it the good ol’ college try. Fingers crossed this one helps me. If there’s one thing I would LOVE, it is for my lungs to not be so freaking tight and to not get so short of breath doing very little. I want to be the super woman that everyone thinks I am when it comes to getting house chores done or even running errands…WITHOUT having to take a million breaks to catch my breath. One can dream, right?

    Until next time…