I am going to talk about the logistics of CF today. I didn’t even know if I wanted to write anything, but here I am.

I have been doing 3 treatments a day. Each about 30 minutes. I have this awful choice to stop it whenever I want out. There are 6 time frames of 5 minutes each. I start at a low setting, and during that 5 minutes the intensity climbs, then after 5 minutes, it stops; I hit “start” and the intensity slowly declines to where I began at the end of that 5 minute interval. I can increase the pressure with it; it defaults at 60% which is soothing, but you can go all the way to 100% and that is when you pretty much can’t breathe.

It is a vinyl jacket; great in the summer! I latch on two tubes that force the air through, and literally feel as if I take off.

My doctor back home invented the machine. He noticed, I don’t know why this situation even happened, that when one puts a blood pressure cuff around a dog’s neck, the dog coughs. Thus, through him and Physic Graduate students at the University of Minnesota they came up with prototypes.

The vest is the most amazing invention for CF patients. It has allowed independence where it just did not exist before. Before I had my parents pound on me in a variety of positions.

I was not able to get the vest until I was 18 years old, because my parents made enough money not to qualify for special programs; not poor enough, yet we were not rich. The vest originally cost $15,000 in the mid 90’s.

I upgraded 5 years ago to a newer model; half the weight, 17 pounds, and looks more like a PC hard drive. I will have to post a picture between the new and old model. The old model, odd looking thing; but it worked!

To get the newer model it consisted of me writing a 6-page letter to make sure the insurance company understood fully that after 10 years it was time for a new model. After speaking, writing with other CF patients, the insurance company always came back with a letter stating “DENIED” the first time around. I decided to up the game and leave no space for them to jab me. After a month, I called and the gentlemen on the phone stated I was “APPROVED.” He mentioned my “rather lengthy letter” they received.

The newer jacket is custom fit, not a generalized small, medium, and large size. The tubes latch on, so when you twist the tubes don’t fling off and scare the shit of me. The new vest price was $13,900. My insurance “bargained” the price to $12,500. A bonus to the process, I was offered a promo because this was a new design; a new company start-up driven by my doctor, as the old vendor was Hill-Rom. If I put $2,500 down up front FOR THE REST OF MY LIFE, not the vest’s, I will have COMPLETE coverage, repairs, upgrades, everything. It was a dummy decision.

One of the best investments I ever made. And I am so fortunate that I was in the position to have the $2,500, I know many people are and were not.

When I think of expense when it comes to medical equipment, these figures come to mind. A few hundred dollars, a $1,000, not bad; even $2,000. A new car price, obscene.

All of this is what it takes to live with a long term condition. It is absolutely crazy.

Today I have done two of my three treatments, exercised for a hour, stretched. Two days this week I did yoga; killing me, KILLING me – a great killing though.

The most awesome thing, and maybe it won’t happen tonight, I DID NOT cough at all last night. No kleenexes on the floor. It has been months, seriously.

Let me tell you something, and the reason I didn’t know if I wanted to write today; I can see why people quit. There is a max, a ceiling, and it hasn’t even gotten hard yet. I am fairly healthy in a sense. Trying to remain at this level is hard. Yet, nothing is easy about any of this. There are only things less harder than others. And I should not have to work this hard to breathe like any other person. I KNOW and completely self-aware that other people have it far worse; I know if I wasn’t born in the last half of this century I would have died at birth. I get it. I have always gotten that.

Yet, there is a limit.

I got a follow-up appointment, June 14th, 9:45 am. I am trying not to be nervous, I am. I will try not to be and get into that tight frame of mind. Sheila says matter-of-fact, “You have nothing to be nervous about. You are doing better; you said so yourself.” I had a moment. I knew I would not handle this stuff very well. I know myself well.

A few good things about this slot:
-It was supposed to be a friend’s baby-do-date. My friend already had their baby. Nonetheless go mojo.
-It is in the morning when I generally have higher lung scores. Something about the natural body time clock, cycle; people become sleepy during the afternoon. I read once, true or not, this is when our liver rests. The liver provides energy to our body. It takes longer to process food, toxins, when the liver slows down and that is why people become tired in the afternoon. The liver works all night when other systems sleep. I suppose not everything can sleep at once otherwise we would be dead.
-Two days prior I can do 3 treatments a day.
-My mood is stronger in the morning with a tight focus.

I know I am not dying, but the thing is, every step counts. My entire life, which I will explain my lung scores a bit more later, I have been told two of my lung scores in particular are the KEY indicators how long I will live, if the bus doesn’t smack me.

If you had a number, one number to know your future, you would keep a close eye on it too.

Every notch up or down counts. I want to ascend, to keep ascending – to keep flight.