Trikafta: Day 7- It’s been one week…

One week ago I turned 1. My health began to head down a different path. Not the one of more struggles, more pain, more obstacles and then a lung transplant, but one of renewed health. Something I only dreamt about after a long recovery from a lung transplant. Something I was dreading I would have to do in my not so distant future.

I’m not sure I can encapsulate in writing everything that has changed physically, mentally nor emotionally. I’m still living in an alternate reality. To breathe again feels like freedom. It feels like peace. It feels like calm and reverie. Breath is what keeps our bodies going. Without it you die. Losing that breath little by little, year after year is absolute torture. You remember when you could change the laundry just a year ago and now you need oxygen and rest breaks. You remember when bringing in the groceries was no big deal and now you have to have groceries delivered and till struggle to bring them in from the porch. You remember when you could walk down the block on a straight sidewalk and not have to stop to catch your breath. You remember and it’s painful. Year after year you say goodbye to your freedoms while your body pulls you into its prison. I was living in my own prison, fighting everyday to make it to the next day. It was hard and felt futile. it was humbling and exhausting. It was impossible. And now, now I feel free.

I am still severely ill but it stops here. I can walk that block without stopping, I can put that laundry in the dryer without my oxygen and I could go get my own groceries but don’t due to Covid. I am still sick yes, but I just got a part of me back. I have so much to look forward to now. I have so much to live for. I can take a damn break from my old life and get some real rest. A rest I thought I would never see because even with transplant, you don’t get a rest. You trade one disease for another. This feels different. I know I’m not cured but I feel like I can live at this new level and wait for the researchers to figure out how to regenerate my lungs. Yeah I know, I’m getting old and when will all this happen. LOL but now that I have seen a miracle I am not doubting anything anymore.

I am so glad that I worked so hard taking care of myself. It has prepared me for this new life. With my Crossfitting and rowing and walking and never giving up its allowed me to thrive on this drug. All this activity hasn’t left me sore or tired because I prepared my muscles as best as I could. I hated it so much because it was so damn hard but it was a part of me that was non-negotiable. If I had stopped moving, I’d be dead. Exercise for a CFer is just as important as all the treatments. So I am proud of myself. I’m glad it finally paid off.

Now I am happy to share all the good things that happened to my health this last week:

1. The mucous in my body has dwindled down to almost nothing.

2. With no mucous, I have no cough.

3. With no cough, I have more energy and am burning much less of my coveted calories.

4. With more energy I have been able to tackle tasks that normally required outside help, 3 litres of oxygen and many rest breaks.

5. With tacking these tasks I feel like a new person.

6. Exercise is not a chore, it is a gift.

7. My outlook on life is changing. I feel like I could start to set some goals. Goals that are actually attainable.

8. I want to spend more quality time with my bestest friends and family and share the best of me with them rather than the broken worst of me.

9. I want to let go of my anger. Anger is what fuelled me to conquer every battle I was faced with. I’ve been pissed off with my CF since I was a little girl. It’s time to put that demon to bed for awhile.

10. I want to live, to feel alive, to feel like my star has been lit and it’s my time to shine.

11. I feel like I can take a vacation from my old life and just relax. I don’t know how to do that but I am willing to figure it out,

My journey has just begun and truly, the skies the limit. No mountain climbs but a whole hell of a lot of little victories to come. I can’t wait.

I was blind and now I see.

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