Investigation

I was determined to do the best I could to verify my diagnosis. I had zero trust in the emergency room doctor I had initially seen and was unclear as to how the diagnosis was made.

First I checked my medical records thoroughly. What I found there was inclusive, although yes, ideopathic pulmonary fibrosis was mentioned. COPD and asthma were also mentioned. I have suffered from asthma on and off my entire life so that was not news.

Finally, I asked my primary care physician; a doctor I have a lot of trust in. He said my breathing issues were a combination of factors. That left me with a sliver of hope.

Personally, I know this. My breathing has gotten somewhat worse in the past three years, but I have had periods where it is much better - nearly normal. Am I inching my way toward death by suffocation? I don't know, but my guess is that I probably am. The good periods are so damned good that I can deal with that future - at least for now.

I don't think my situation is as bad as it is for other folks with IPF, so I sure can't speak for them and I sure can't give any advice. I just live while I can and make an effort to deal with things when they are not good. Right now, they are good and you can bet I am going to take advantage of that.

Of Deceit and Hope

Here's what happens - at least it does to me.

You know all that stuff about hope or, maybe more accurately, being positive? That, of course, has to be done more or less consciously. You have to try to be positive in the face of death. So you try. That's hard work, but you do it anyway because you have no choice.

The deceit part becomes a factor when you start to feel better - when your health is on the upswing. You have been told that you will have those periods of feeling better; periods where you can breath better. They will last for varying periods of time and how good you feel will vary too.

So, here is the situation I find myself in at the moment. I am feeling better and I am not just trying to be positive. I actually am feeling better. I am hopeful and I am not trying to be. That hope is totally natural. Most of the time I forget that this lung disease is killing me.

All of that is groovy, but am I just being fooled?

Honestly, I don't know, but I am going to go with it while it's there because maybe at the end of the day all of us are being fooled by something. In fact, I know we are.

But, heck, dance while you can hear the music.

Good Days Happen

Something, probably an upper respiratory infection, caused me to have a couple of weeks or more of real breathing issues. It is discouraging at best and depressing at its worst. Essentially you begin to feel like it's your last hurrah. The book is almost finished. You face death and see whether you will blink.

Then, inch by inch, you start to feel better. Your breathing is nearly normal. You can't rejoice exactly, because the fibrosis is still there. You can, however, be extremely grateful that you can breathe - almost normally. You can start to believe that you have a few more hurrahs left in you.

Episodes happen again, but they are are not bad yet. (Who started using the term "episode" for medical problems?) Heck, I went to the coast for the weekend and walked around like I was - well, to be honest, like I was about 66 years old. A sort of  mini-episode happened today, but I can handle mini anything.

May all your episodes be good ones.

Images

Today I got a bunch of my medical records from the hospital. The trick is for me to try to make that interesting for you. I'm not sure I can pull it off. Maybe I should leave out the jargon and go directly to the point.

I found out the name of the doctor who treated me like a dirty dish rag. Oops! Not even that good. He treated like I was something floating in his toilet that he wanted to get rid of. After plunging he finally flushed me away.

Nope that won't work. Let me go back to the drawing board. I sounded too whiny there.

I need to see the pulmonologist (a doctor who possesses specialized knowledge and skill in the diagnosis and treatment of lung conditions and diseases). The medical records raise some questions. OK - I am grasping at straws. But I am not getting my hopes up.

There was the point where the records said the fibrosis was getting better. (There was also a new report saying it was worse.) My impression has been it never gets better. There was the page that was calling it something other than pulmonary fibrosis. There is the fact that none of the records use the word (idiopathic - self-originated; occurring without known cause).

Let me think. I agree that wasn't exciting. Nothing about this thing is exciting and I sure can't make a silk purse out of a sow's ear. The problem is I want to reach some people who have an interest in this disease and I need to figure out a way to do that. My son said to make it more personal. (Yep, I am a single dad of a 17 year old.) I think he is right, but how can I make medical records personal as well as interesting. Impossible, right?

Maybe the bottom line here is hope - not false hope. I mean just good old fashioned hope. I hope that I get better or just even hang around on the planet for awhile longer. Does that seem reasonable?

Yeah, I think it does.

Roller Coaster

Ah yes Idiopathic Pulmonary Fibrosis. It's a name that does not roll off the tongue particularly easily. It's an always fatal lung disease that gets progressively worse. It's a bummer.

So you wake up one morning and you can't breathe? Well, not exactly. Every person is different. It's kind of like English grammar - the rules have exceptions. Sometimes your breathing is OK and other times it's not. Gradually the “breathing is OK” turns to "sort of OK", then "sometimes bad", "sometimes real bad" and then it will slowly reverse itself and go the other direction - sometimes completely, but temporarily, sometimes not.

A while after you get the news, everything will be heightened - in neon, three dimensional, with exclamation points. Your senses, your emotions, your moods, your feelings. Everything. Maybe that's because you are dying. Maybe it's because you notice you are breaking - almost all of the time you notice it. You are breaking because of your breathing. Always your breathing.

It is as though you are reading a book and thought you were paying attention. Suddenly, although you remember what you read, you realize you weren't paying attention at all. And now you start to notice everything you read. In fact, you are reading it and writing it at the same time. You know what the ending is, but you continue to read-write with a higher consciousness than you have ever known. You own this book. This book is you.

Oh, but yeah, you are in a daze about it too and don't notice, hear, feel, anything. Nothing at all. Partly that is because your mind is somewhere in the past. You are living in the past because the past is now. In fact, everything is now. It is as though you see things, but others can't see them. It is as though you can see life and death at the same time. About then you realize you are alive and dead and the movie title makes more sense to you than it ever has - dead man walking.

Maybe that is what Zen enlightenment is like. Everything and nothing. Alive and dead. All at once. Nothing at once.

Maybe that is why this now popular thingy "just breathe" is so annoying and right on at the same time.

Does that make sense to you? I hope on some level, you can feel what I am writing. You can sense it. I don't think you can understand it - well, I know I can't understand it anyway.

Note: I am not a doctor or an expert on Idiopathic Pulmonary Fibrosis. I am just a guy who has that disease.

Who Am i?

WHO AM I?

I am a father, philosopher and person with a fatal illness. That creates some challenges, embarrassments and , oh yeah, ultimately death. In this blog I intend to write about that and, of course, incorporate some related topics - some distantly related, no doubt.

I have a disease called Idiopathic Pulmonary Fibrosis – a name that does not roll off the tongue particularly easily. It's an always fatal lung disease that gets progressively worse. Here is a definition based on what I have culled from the internet:

“Pulmonary fibrosis refers to scarring of the lung tissue (fibrosis of the lungs). The most common type of pulmonary fibrosis is called idiopathic pulmonary fibrosis; its cause is not understood. Treatment options for pulmonary fibrosis are limited as the disease is progressive (worsening over time). The prognosis (outlook) is poor for pulmonary fibrosis. The survival (life expectancy) for most patients is less than 5 years.

“With time, shortness of breath (dyspnea) worsens. Dyspnea initially occurs only with activity and is often attributed to aging. Over time, the dyspnea occurs with little or no activity. Eventually, the shortness of breath becomes disabling, limiting all activity and even occurring while sitting still.”

Because the diagnosis was given about a year and a half ago, I have moved along in several areas. First, while there wasn't denial, there was a kind of ignore it attitude. Anger didn't follow, it was part of the initial stage and it was aimed at the doctor who diagnosed me. He was a young emergency room doctor in a local hospital, who spoke to me about five minutes, ordered a chest x-ray and then had a male nurse hand me a piece of paper. The nurse said, "I am so sorry" and then gave me the death sentence on a standard print out. I am still angry about that part.

I have moved on now to accepting my situation. There was no magic involved in that - just "bummer, now deal with it." The two people closest to me have been very supportive, helpful and caring. I am very lucky in that regard.

Note: I am not a doctor or an expert on Idiopathic Pulmonary Fibrosis. I am just a guy who has that disease.