Author: admin

I purchased a large binder, some tab dividers. With all of the tests and doctors I have to stay organized. Frankly when they give me 1/2 of the paper work I don’t understand it. I now have a health finder.

TAKE NOTE: Get copies of everything you do and put it in your binder. If they do a CT scan— ask for a disc. Is there blood work? Print it out and put it in your binder. I’m becoming vigilant about this binder. Put your own notes in as well.

Pusche

On a positive note, I feel stronger. It is day 102 of my lifestyle change. Every day on the treadmill and yoga along with mostly plant-based diet. I started walking and sprinting on the treadmill and can do o.k with the oxygen of course.

Today I went to the pulmonologist. I thought he would say something like. You are almost over pneumonia you are doing a good job, you will soon be off of oxygen. Instead, this is how the conversation went.

Doc: “I’m going to diagnose you with interstitial lung disease.”

Me: What? I’m flustered looking for my pen. “excuse me?” I poised to write it down.

Doc: Just google ILD. He seems flustered with my being flustered.

Doc: I’m not going to lie to you, if it is idiopathic then those people usually have no more than five years to live.

Me: Now I’m looking flustered.  What? Did he say I might have five years to live?

Doc: So let’s hope you have an autoimmune condition such as rheumatoid arthritis or scleroderma, I’ll also test you for HIV. We can hope it is one of those.

Me: You are hoping I have one of those things?

Doc: Yes it is better than the alternative.

The doc gets up to leave, and I thank him. I thank him for having a bedside manner that is crappy, for scaring the shit out of me. I’m so flustered I forget to pay, and when I’m out in the hall and on the phone and reiterating what the doc has just said to me, I’m confused.  I don’t want any of these awful things, but I don’t want to die.

Breathing through panic,
Pusche