First PFT

I realized I never made my updated post after my pulmonary appointment. So here we go...

September 13th I had a my first Pulmonary Function Test since the trach removal.

*Similar to what a testing lab looks like*

We don't know exactly what my lung function is because I didn't have the muscle portion done but if my pulmonologist had to guess I'm probably around the 50% range. I do still have an airway obstruction, which I knew and could tell I still had. I'll follow up in 3 months. Then I will likely do the muscle function test in December or early January.

Due to whatever Mitochondrial Disease I have my lungs are still weak and will probably always be that way. Something we'll have to keep an eye on for the next forever.

My lungs are at least WAY better then the 11% they were in December!!! I knew some stuff wouldn't be resolved like the weakness and the obstruction, but I'm much better then I was! So I'll take that!!

This time last year I was on oxygen, talking was a struggle, I couldn't make it far before feeling like I was gonna passout. In December when things progressed to 11%, the likelihood of me making it to this Christmas was grim. I think I was more scared of not being here for the girls birthdays.

When I got my trach out its like I started actually living with purpose for once and stopped taking everything for granted. I put my phone down, got off social media, and started paying attention to those around me especially the girls. If something ever happened I wanted them to have meaningful memories of me not just the basic ones.

I want to do and get done everything I had planned and hoped I would before I got sick. When things were bad I promised if I got even a tiny bit better I would live like everyday was my last. My kids would get all of me.

Living in the moment wouldn't just be this nice phrase we say or live by a few days a week, but it would be a daily thing. Today could be my last. Two months from now my lungs could crap out again. I want to get everything done I had planned for my girls, for my family, even for myself. I promise I will!

I promise they will remember me more for the good and fun then they will ever see or focus on the bad. I never want them to say I didn't do something I said I would. I'm not one to say something and not do it. Then to be gone forever and to have that hang over them. I refuse to leave them with that.

Since getting my trach out I have been living life. I've been focused in doing what I said I would, which is why its taken me so long to write this. I'm a live and I'm living!! My time is not guaranteed!! I am not cured, my body is still weak and that is a whole different post for a different day!!

Keep fighting to breathe another day

💜 💚

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