Philosophy:

I often ask myself and quite confused why some CFers are healthy and why some are not?

What is that each of us are doing so differently?

Is it because of their genotype?
Perspective?
Medications?
Care center?
Routine?

What is it?

To de-clutter the confusion, the genotype matters. I am not going to go into the thick science of it all; I have read lots on it and recently found a paper in the UK quite interesting how different proteins function in CFers.

To be clear cut: there are certain CF mutations that affect only the lungs and then some that affect both the lungs and pancreas. Then, in those two categories there are tons of variations. This is what scientists and researchers are consistently trying to figure out – the variations.

They generalize it in some form: how dependent are you on modern medicine to stay alive essentially. They broadly characterize it in severe, moderate, or low.

I have known CFers that have had to do their treatments
4 times a day (every 4 hours),
3 treatments,
2 treatments
1 treatment
And barely a treatment

I have heard of CFers doing their treatments 1 a day, 5 times a week. I am not sure what happens the other two days?

When I was 14 years old I had this wonderful opportunity to go to CF camp, the last CF camp, as it was shut down due to cross contamination. A friend of mine only had to take 6 enzymes per meal; I had to take 26 enzymes per meal. I was like “Hey – WTF” . . . before WTF existed.

I think there are some truths that must be taken into account.

Everyone, CF or not, has to move and keep moving.

My former doc for eons, Dr. Warwick, finely pointed out, “If you exercise or do your treatments adequately you don’t have the bacteria down in your lungs to begin with and you don’t have to worry about which antibiotics will or will not work.”

Airway clearance is key. Non-CF people have beautiful hydrated lungs, they wash away all the bacteria just like you are taking a hose to your dirty front step. Non-CF people’s lungs have beautiful proteins in their cells doing the job they were designed to do.

CFers, depending your mutation, have a tiny amount of water, some little, and some in between. It depends how much water you have to wash away the bacteria. If you don’t – the bacteria hangs around. Some of the proteins make it to the surface of our cells to do their job; some make it half-way, some don’t hardly leave the bottom of the cell. Exchange is limited and little water.

This is where the nebulizer treatments come into play – hydration. Then being smacked on your back or percussion therapy/vest treatment/whatever the hell works for you, is just pure force; literally smacking the shit out of you.

If you do the nebs and getting smacked enough, the bacteria doesn’t have a chance.

Movement, exercise, is similar to being smacked.

There are so many variations on what works for you, and your doctor is trying to find the right balance with the right medications in your neb to get the best effect.

There is tension in the effectiveness of your treatments and how well you feel. Sometimes you need to do more treatments or exercise, but you don’t have the energy.

This is where I think this becomes a mental game. You have to leap over this tension and change the way you think.

This is the everyday game.
Stead-force, steadfast, strength, stamina – whatever you want to call it.
There is a lot of laughter in there; a lot of tears. There is a lot of work. Work that I am not afraid of doing. There is a lot of energy. Some days, it is like dragging a boulder up hill.

It takes a lot of love, all around.

Care center philosophy –

In my POV, I find the east coast is like “Eh – do what you can and we’ll see what happens. We want you to feel good, but whatever works for you.”

In MN – “You will live to 80 years old and if you want to argue with me, go ahead. These are all the things we do to support you and we view everything with the cup flowing over. We will get you there.”

I bet if I visited a care center in the west coast, acupuncture would be in my standard of care. All the west coast myths and truths would probably come into play. Diet, yoga, all sorts of things I am sure would contribute to my new way of thinking.

I bet if I went to Europe, be a completely different philosophy.

I read what people do in different parts of the world, but it can be overwhelming so that is when you shut the computer off.

I want to point out – there is no winning in all of this. Winning, in a sense of winning over CF. It is a partnership.

I am getting hungry again.

So what we have here is:
Mutations
Dehydration vs. water
Therapy/getting smacked – how many times a day
Exercise/movement
Tension
Philosophy

My doctor told my mom when I was diagnosed while being sent home with a plethora of medical supplies –

“You can do everything; be perfect like God, and Tessa still may die.”

I believe he was trying to comfort my parents that if something happened, don’t blame yourselves.

So – to anyone and everyone out there reading this, CF or non-CF folks that can comprehend any of these words, I say –

“We still may live.”

And keep living, WTF.

And living beyond what we thought we could live to.

And then we say “WTF.”

And live some more.

And experience joy some more.

And laugh some more.

And say WTF a lot.

Every door closed there is a window someplace or something.

We already walked through that closed door, looked behind, and shrugged our shoulders.

Then we broke through that window –

That window,

And that window.

I believe in nothing less.

I refuse to believe in nothing less.

WTF.