New Normal Post Trikafta

I have been wanting to write about my post Trikafta life, but I am finding the words so hard to find. It is so hard to describe how much my life has changed in so many subtle and hugely obvious ways over the past 5 months. I am going to highlight the biggest changes I have felt.

• PRE: Treatments used to be such an exhausting all consuming part of my day. I needed to be ALONE because I would cough so hard and so violently that it took all of my focus and energy. I would get red in the face, break a sweat, gasp for air, and cough up so much mucus I needed a cup to catch it all. If it was so too soon after eating it would cause me to throw up from coughing too hard!  
• Post: I can easily play a board game, work on the computer, or hang out with my family while I do treatments because I never ever cough! I don't use up all my energy reserves to do treatments. Instead it feels like maintenance like brushing my teeth or combing my hair. Not particularly fun, but not exhausting, stressful, and painfully time consuming. 

• PRE: CF dictated everything about my life. I could not get out of bed before taking my inhaler. When I did get up I would cough and cough until I finished my treatments. In the evening if I tried to push off my treatments by a few hours (usually when we were having a fun evening) my body would revolt and I would cough and cough until I relented and did my treatments.
• POST: I can wake up, eat breakfast, stroll through my garden, and then settle into my treatments late morning if I want. I do not feel like my life revolves around treatments anymore and my body can function without using my inhaler. I went from needing my inhaler within arms reach at all times to feeling secure in knowing I can survive without it. 

• PRE: If I woke in the night and had to get out of bed (to check on Kaylee, to pee, etc) my lungs would "wake up". My heart would start racing a million miles per hour, I felt breathless and my coughing would begin. It was horrendous. I would often feel afraid that my body would quit after those middle of the night wake ups. 
• POST: I can wake up, go to the bathroom, come back to bed and fall asleep like everyone else. No racing heart, no panting for air, no coughing!!

• PRE: Every day was different. Some days I would wake up and my lungs would be okay, sometimes my lungs would be tight and congested. Almost every single day at some point I would feel BAD. Almost every day I felt like I was on the verge of an exacerbation. I felt bad significantly more often than I felt okay.
• POST: I don't notice my lungs anymore, they feel good every single day! I have days I am more tired than others or some days I feel off, but it is never because of my lungs. 

• PRE: Getting sick meant a few months of trying to get "well" again. Even a simple cold or allergy season made every single day a struggle. Even a small cold used to make my lungs react with inflammation so badly that I struggled to breath sitting still and felt like I may suffocate when walking even a few steps.
• POST: I got 2 bad illnesses since Trikafta. A bad fever followed by a respiratory infection in December and then Influenza A in February. With both sicknesses I felt awful, feverish, miserable. In December I felt so bad I was crying to my husband because I just knew when it hit my lungs I would be in really bad shape. In fact, I genuinely thought I may die. I waited every day for it to hit my lungs and for the inflammation to take over. The inflammation never came. I ended up on oral antibiotics because I was coughing up mucus, but the death grip my inflammation usually puts on my lungs was nowhere to be found. A few months later I had a similar experience with the flu. I truly believe that Trikafta saved my life.

• Pre: I never expected to live a full life. I mourned so many times the loss of growing old. I used to think about how hard CF was on my 20-30 year old body and wonder how a 60-70 year old body could survive the abuse (if I even made it that long) and it felt completely impossible. 
• POST: I fully plan to see retirement, my grandchildren (if Kaylee decided to be a mom), and to grow old just like everyone else. 

This is already long, but I feel like it is just the tip of the iceberg in how much my life has changed. I feel grateful every. single. day!! I was given my entire life back and there are no words in the english language to even describe the joy Trikafta has given me!

Everything Feels Backwards

I haven't written in a while. For so long CF was taking over every aspect of my life. I didn't want to dedicate more time to CF and talk about it in my blog. A year ago I just finished transplant testing and CF seemed to be at the front of everything. I wanted to push CF to the back of my mind and ignore it's existence. Of course, my failing health wouldn't let me and so I took a break from blogging to get a mental break from thinking too deeply about what was happening in my life.

In November, Trikafta entered my life. Suddenly, I had energy, I had health, I had hope. I was busy living life. So many fears and worries of the future melted away and I didn't want to stop living my life to write about CF in my blog.

Then March arrived and Coronavirus arrived in the US. Schools closed, my husband's work closed, and we were told to hide in isolation from everyone we knew. It is amazing how quickly life can change.

It is strange how my "corona" life has mirrored so much of my late stage CF life. So much fear of germs, wearing masks in public, missing out on fun things in the name of health and safety. It almost feels like life as usual except I am not the only one canceling fun activities, wearing a mask, slathering hand sanitizer whenever I touch anything outside my home. The strangest part is while the world is suffering and struggling I personally feel well. While thousands of people worldwide are gasping for air, suffocating, feeling the exhaustion that comes from the lack of oxygen, I am breathing fine. I no longer wake up coughing, I no longer experience shortness of breath, I can breathe. And I guess I should feel relief...and I do.

But man, my heart breaks for every person suffering right now. I know too intimately what they feel, despite never experiencing coronavirus. I know the fear, the panic, the pain that comes from lungs that are failing you. And I have had 35 years to cope with it, and 35 years of getting through so that I can tell myself (even lie to myself) that I will be fine even when I struggle to breath. But all of these people are experiencing it for the first time and the fear they feel must be extraordinary. My heart breaks for them. My heart breaks for their family.

It feels so weird to feel healthy in a suffering world when for the past few years I felt suffering in what felt like a healthy world.