I had a very good day yesterday. I am even shocked by it.
My lung capacity increased from 1.98 Liters 59%, to 2.55 Liters 77%. It increased 500ml, or a half of a liter! 18% increase –
It leaped over the 60s. I thought in all good measure I could be at 67, 68%. I thought I definitely had not gone down, symptomatically.
Let me break this down:
The 77% is called the FVC (Forced Vital Capacity) – is the amount of air that can forcibly exhaled from your lungs after taking the biggest possible breath and blowing it out.
The other number that is highly important, is not as great. I always focus on the higher number, because why would I focus on the lower number?
The FEV1 (Forced Expiratory Volume) is the maximum amount of air you can forcefully exhale in one second. It is measured the degree of airway obstruction caused by x lung disease, whatever it may be.
That is 56%. That number increased 12%!
These are “The Two Numbers” that forecast, or are the most telling of the quality and the length of one’s lifespan. I have been staring at the FVC/FEV1 numbers ever since I learned numbers.
Technically there are four numbers, but today, the emphasis is on the FVC/FEV1.
Growing up, I watched Dr. Warwick plot these numbers with a red, blue, green, and black pens on a graph. He would show me how well I was doing, or if I dipped using his pencil test. Is the straight edge of the pencil generally going up or is it going down?
Then, what do to about it? That dove into a whole cast of characters: meds, treatments, calories, cough, weight, etc. All to be written and all to be studied.
Going back to the PFTS, my trachea closes sometimes when I force the air out. It is because of doing so many PFTs over the years.
The first try it closed. The air was moving out and then it flat-lined. I gave a heads up to the tech. I heard the air become silent in my ears. Think of entering a loud room into a quiet room, the sound engulfed, just inside. I knew it collapsed.
The second, third, and fourth try I force the air from my gut and tried with all my might to keep my trachea open. I heard the wind pass inside; the sound stayed the same. It worked.
These are all nanosecond possibilities.
On the hierarchical values, I really wanted my liver to be okay. If my liver is okay, I can continue taking Trikafta.
My liver is great. My weight is great.
“Do you know your BMI?” They are quick with that one.
“No, but I bet I am on the edge.”
My God, give it a rest. I was asked that twice.
My A1C, fabulous. That is my sugars ticker. Everyone watches that like an eagle going in for its only meal for the winter.
Chest x-ray, better.
They have structured the appointments like MN. Everyone comes to the patient, no separate appointments. I will never make it to all these appointments otherwise. I saw:
PFTs
The MD
Nutritionist
Respiratory therapy
Social worker
Research.
So, what is next? Can I run again? My knees . . . . Laughing with a hard-pressed, “No.”
I will continue doing what I am doing, and up it a notch. I just got my bike rack. I want take my bike and put some miles on it.
You have to work.
You have to continue to do the work.
The work is about being real, and doing what your body is asking.
I looked at my chest x-ray closely, and I thought:
You need me as much as I need you. Stay the course.
Many blessings. Much love. Many, many thanks to Vertex for creating Trikafta, this unbelievable life-changing med. Keep moving forward.