CF Happens

I added “pre” because I’m NOT listed for a lung transplant yet. Some people get confused when I say I have/had a transplant checkup. These 6 month checkups are so they can put eyes on me, as well as doing the necessary maintenance testing like labs, chest X-ray, 6 minute walk and PFTs. This keeps me up to date on everything so that in the event I have a drastic decline and need to get listed ASAP, it will expedite getting listed. It will save time in the listing process with not having to backtrack and do ALL of the testing.

Now to the details. First appointment was for labs and chest X-ray. My lab results were in the patient portal within an hour. All were good!! The chest X-ray is just to make sure there’s no big changes, which there isn’t.

Next appointment…6 minute walk. I have to do the 6 minute walk each time to see how I’m oxygenating and to see if I’m staying steady on distance walked. They want to see if I can maintain my oxygen level while walking. I’ve never really had a problem with keeping my oxygen up, except for times when I’m having a CF exacerbation (actively CF sick) or when I’m having a bad asthma flare. Most people assume I should be on oxygen or that it would help me with how crappy lungs are and with being at 32% lung function but having crappy asshole lungs doesn’t automatically mean oxygen. I walked 1,076 feet with no stops and didn’t need any oxygen. My O2 stayed at 99%. Last appointment in March I walked 1,176 feet with no stops and no oxygen needed. So that’s steady!

Next appointment was for PFTs (lung functions). My best was FEV1 32%/.89L. So that’s steady too!! My ABG (arterial blood gas) which is a tiny needle stuck in the wrist in the artery to get blood directly. That test looks at the level of oxygen, carbon dioxide and the pH. All was good there too!!

Final appointment was with the transplant doctor. I like the doctor I saw. I’ve seen him before. You never know who you’re going you see sometimes. Haha. Consensus is…I’m holding steady which is great! As I’ve said before, the goal is to use up my original lungs before getting new ones. Statistics for survival rates after lung transplant have gotten better over the years of course as treatments have gotten better. With that said, it’s still best to use up my original lungs for everything they have to give. Getting a transplant isn’t a quick fix to having better lungs and breathing better. Yes, it sounds like a good idea but the goal is to be alive for as long as possible therefore I will squeeze out every ounce of life my original lungs THEN get a new set of lungs and keep on living for as long as possible!

I told the doctor all about “Pete” the peanut in my L2-L3 that will be evicted soon. Speaking of…I FINALLY have an initial appointment with the neurosurgeon to talk about surgery. That appointment is October 17th. Yes, it’s a ways out but at least I now have an appointment on the books! What’s a little more time when I’ve been hurting for multiple months. I’ve survived this long. I got this! Haha

The short update is, I’m steady and maintaining so keep doing what I’m doing. I go back in 6 months for my next checkup.

Until next time…