New Lungs for Jesse

Jesse's journey for bilateral (double) lung transplant for cystic fibrosis

What Is Cystic Fibrosis?

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Cystic Fibrosis (here on out CF) is a genetic disease by way of a mutation that affects the ability of chloride to pass through cellular walls. This results in a lack of water balance in cells because it flows freely out of epithelial cells… which is a problem with mucus. Both sodium and chloride need to freely pass through to keep a balance. Here’s  an illustration.

Lack of water balance results in thickened mucus that primarily manifests as a problem in CFers’ respiratory tract (including sinuses), pancreas, liver, skin, and digestive tract.

I’ll explain more soon. Still filling out site content.

Have You Ever Considered a Lung Transplant?

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Thankfully this was not the first time being presented with the idea of transplant from a CF doctor. A decade earlier, months before getting married, I had dipped below 30% FEV1 (the marker to be considered for transplant). That’s when my education began. Four years later when things got dire once again, I launched CF Fatboy and went on a 6-month binge to gain over 30 pounds.

Both my body and my outlook were transformed. I made lots of CF friends online, met quite a few in person (including post-transplant), and no longer hid my diagnosis. As I got healthier and we moved on with our lives building my business, fostering, and finally adopting two boys, CF became less and less a part of my daily life. There simply aren’t enough hours in the day after getting up at 4am or 5am, working all day, and having family time to sit around pondering how CF affects such a life.

Until things get dire once again…

Looking back, I’d say the downward slide to where I am today started in early 2015. I had my tickets and hotel ready for a conference in Miami, about a 5-6 hour drive away. That weekend was a huge struggle for walking while talking to people, escaping to cough my head off before a presentation, etc. I even almost missed a fantastic opportunity to make friends at lunch with a couple who have become close, but I was winded and just trying to get through lunch.

Looking back, I don’t know why I pushed so hard. I relented on the last day to let my wife load the ENTIRE car of our stuff. I felt like people thought I was treating her like a servant, heaving suitcases and bags into our car, but all I could do was watch.

We kept thinking things would get better. That winter I was diagnosed with tachycardia and got that fixed as a source of shortness of breath… but it didn’t solve my breathing issues. Then we thought finalizing adoption of Boy would make my breathing better. It didn’t. Then we thought my issue was having our new foster newborn… but his getting older didn’t help. Then we thought his finalized adoption… nope.

Facing transplant or worse…

The question about transplant comes down to: do you want to die the one to two years you’re projected to live or give life another shot after being taken apart and put back together?

That’s one thing I’ll touch on in future posts, along with:

  • cystic fibrosis
  • lung transplants
  • transplant evaluation
  • insurance
  • my family
  • a running journal of our personal journey to get me new lungs

The Journey Begins…

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If I have the time, I’ll write more about the last 10 years… and all 38 years if given more time with my busy schedule as a husband, dad, and small business owner. Some of you may remember me as CF Fatboy and my journey to 23 BMI back in 2010. Well, that journey bought me a lot of extra time because we’re just now where I am today in 2017, not early 2010.

A lot of things have changed since Fatboy stopped writing, mainly because we had privacy issues related to being foster parents, so this is a new domain and a new outlet for this stage of life. CF Fatboy will remain as an archive of useful CF life info and tips. This will be about our golden years: transplant and beyond.

This is a short and sweet intro post, so now it’s time to fill you in on what today looks like.