Exercise for Life.

This is what I do. This isn’t a light blog entry. This is it.

I am going to be brutally honest. My lung scores have been relatively stable since January. I haven’t looked back further than that.

I do know from 2010 to now I have lost a liter of air space in my lungs. My chest x-ray showed yesterday physical changes. My left upper lobe in my chest has lost volume and is slowly pulling my left lower chest up, a little – not tons. But, my disease is not only felt but seen more now.

How does this happen?

Mucous obstruction – infection – inflammation – scarring; around-and-around. Much happens in my smaller airways, and they are in millimeters.

My doctor wanted to reassure me it isn’t anything I am doing, or more clearly, what I am not doing.

It is the disease progression.

This is a bullshit disease; a bitch of one, a stupid one, one that makes no sense because even though when I think I am doing okay – who the fuck knows. My PFT machine at home has been a big help, keeps an eye on it. But, I would like to punch someone in the face.

I knew and know that I have been dealt a really hard hand. And yet, supposedly we are never dealt more than what we can handle.

I am still alive, today.

I work so hard in my doctor visits, yesterday two things happened which I would like to take note:

1. My throat kept closing when I was blowing out. In my recollection, I can’t remember this ever happening. In fact, the tech said this usually happens when this is new for a patient. My nurse said I could have been trying so hard my muscle restricted so tightly it closed my airway. Therefore, the result was much lower than normal. I repeated the test at home last night – fine. I was consistent with 3 months ago.

2. My shirt was doused with sweat. So much so – I had to change my shirt. I sometimes bring another shirt because when I do my PFTs it’s like I sprinted. Forever more, I will bring an extra shirt.

I left the PFT lab, which was my annual and longer one yesterday and said to Sheila “I am done. I am so done doing this crap.” I try so hard and then my throat closes. WTF.

But, then I truly see my chest x-ray – I can’t quit.

My weapons:

1. I bought a heart monitor; one you strap around your chest cavity to take an accurate heart rate and wear the HR watch to tell you what it is. Supposedly, research shows that if you work your heart between the 85-100% target heart rate 3-4 times/week your lung capacity will increase. They actually said two times a week, but sense I have junk for health, I better hit it harder. Accurate interval training is the best way. I scheduled an appointment with my CF physical therapy guy to make sure I am doing this correctly.

2. Increase my hypertonic saline in my nebulizer. Apparently, there has been research shown to increase lung capacity. I am going to get the stuff from the pharmacy, not from the stuff I make; directions from Children Hospital. Who knows . . . I may not be making it right, exactly.

3. Continue doing everything else as correctly as possible: drugs, tea, vitamins, antibiotics, therapies . . .

4. May do a round of IVs just to kill some shit, hard, later in the next year; even though it isn’t an infectious process issue.

5. I have found some breathing exercises that are suppose to increase lung capacity as well.

Oh – they found mold in my crap I cough up. Small mold spores that were probably, I believe, from our last place. Thus to me – PROOF!

My lungs/body has been through a hell of a lot these last couple, three years.

Goal: to keep my lungs stable, and what I would love – to increase.

This is so internal, external, subconscious and conscious. This is beyond me perhaps or beyond my mortality – or not.

What I am asking you – nothing for me. Whatever is going to happen is already written.

What are you going to do for yourself?

No excuses. No lame “I can’t; I won’t; time, energy, kids, job, blah…blah…blah…” It is all white noise.

It will come to ahead for you – someday. You should catch, stop it before it does. Cause life on other side, not good.

I may not be here in 10 years, and that’s the truth if something doesn’t change drastically. Maybe it will be one of these drugs that will turn things around. I hope so. I have some plans before then – real plans.

I am exercising for my life – what will you do for yours?