IPF JOURNEY 10-20-2016 (to a friend)

One mans journey down the path of IPF.

JOURNAL 10-20-2016 (to a friend)

This note will be a bit brief due to super low energy this afternoon. Amazing. Even with the “O”s up while on the oxygen, absolutely no stamina.

Dragging a 50′ green hose around the house which is a drag, and listening to the oxygen condenser puffing in the living room. Man this happened really fast! I wonder why it wasn’t caught much earlier. So it goes.

Idiopathic pulmonary fibrosis is scaring of the lungs. It isn’t known for sure why. It isn’t even necessarily from smoking, or so they say. I have read postings from people who never smoked and got it. There appears to be a gene link but what gene? They don’t know.

No prediction on remaining time. Dr. really dodged that one, but she and I knew it is probably less than five years*. I was speaking in code with the Dr. but S caught on so … I’d say less as I am 67 tomorrow. I’ve been joking in my head for some time that I doubt I’ll see 70. Huh. Not a joke any more.

Still not depressed. But I tear up not for myself, but for S who will have to watch this thing unfold and maybe even see my last breath. Wow. Also, reading about other people with this makes me quite teary as well. Maybe it is a proxy for myself but it still all seems alien and not quite me yet. A certainty but not as yet internalized it seems.

Actually writing this thing is perking me up some. But not very quick thinking right now.

Not sure what to tell family yet. Wait until after the Stanford visit? Seems that that is a doubtful project from my reading the studies on the two drugs they are most likely using. In fact, they could make me sick enough to just want to cash it all in to stop the pain.

I’ve read some stuff a long time ago about life the universe and everything. I tried reading that enlightened woman -whose name escapes me- some time ago. Perma Chandra? Nope, found it Pema Chodron. Did not resonate with me at all. Sorry, but it is Alan Watts all the way right now. Humor. Human vulnerability. Incredible brilliance. Something even an intellectual can understand.

I have lost almost all interest in the crap we have been watching on TV. But it is all S and I really do together these days.tv_highquality Going out to dinner is not happening, yet at least. Fine wines are at a minimum at present. I am not cooking of late either, and cooking has become something of chore with so much of this visiting doctors and such. She cooks better than me anyway, but time is more valuable now. […] So it goes.

As for me, I don’t think there is a documentary on history or oppression or social justice that I need any more. It was fun when it was a possibility for the classroom. No more classroom. I may look again at IAI (Institute of Art and Ideas https://iai.tv/ although it can seriously bog down in absurdly abstract discussions. Then again…

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IPF JOURNEY INTRODUCTION 10-12-2016

This is a series of reflections over time by a guy who during the summer of 2016, at age 67, on vacation, found out he has idiopathic fibrosis, or, IPF. That’s me. A very simple definition of the disease is that it is one that produces scaring (fibrosis) of the lungs (pulmonary) which has no known single cause or cure (idiopathic). You can find more detail elsewhere.

I need to share my experience in some manner, even as I continue to discover its menacing secrets. So you are invited to read along.

As a warning, this is not a day-to-day recording of the progression of my disease or its treatment. It is a recording of me on a sort of day-to-day basis.

Eric Panama Hat small cropped
Me trying to look cool before putting oxygen tubes in my nose.

It is more about the person inside. If you want the outside stuff, or a more technical approach there is a lot out there. Imagine that I am a being who has recently been placed into a kind of petri dish. There is stuff growing and changing all about me but I remain at the center.

I do enjoy a conversation so feel free to post something if so motivated.
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