OMG

Not too long ago I was on the phone talking to a nurse at a new doctor’s office. It was the usual sort of Q & A for a patient new to the practice: who referred you, what do you need to see the doctor about, give a brief history. I’m used to it, I’ve done it quite a few times – the only problem is making the history brief. So I’m talking to this very nice nurse and I tell her the very short version of my story. “Oh my God.” That was her response; or words to that effect. It wasn’t the first time that I’ve heard that sort of exclamation, but it was a while before I realized why I was getting it.

I used to think that it was because of what was wrong with me and how long I was ill and all that had happened to me. Then I realized that it was because they were surprised that I was alive. Then it finally sunk in that not only was it because I was alive but I was actually talking to them.

This is all the nurse heard: In 2005 I got Legionnaires’ Disease, developed Acute Respiratory Distress Syndrome, sepsis and was in the ICU on a ventilator for almost 6 ½ weeks. That’s all it usually takes for a doctor or a nurse to make a comment. I don’t even get to explain that I was originally taken to the ER by ambulance because I had a blood oxygen level of 87 and dropping. Or that I was intubated all but the last few days I was in the hospital (normally they do a tracheostomy after a few days). Or that I was on dialysis for 3 – 4 weeks and my heart stopped once. The medical professionals don’t need that much information. They get to OMG right away.

Now, if only it was that obvious to me maybe this would be easier to get through. Oh well, at least I make an interesting patient.

A little background detail

Well, I've decided to go with the abbreviated version. Yeah, this is the shorter version. There is a lot that could be said, but I want people to read this, not run away from TMI overload. I am doing this partly for selfish reasons, but it is in part for others. I wanted to tell my story in the event that it may do me some good. I also wanted to put it out there for other people to find because it helped me to read similar stories when I was first looking for info about what had happened to me.

The short version:
In 2005 I got Legionnaires’ Disease, ARDS (Acute Respiratory Distress Syndrome), sepsis, suffered multiple organ failure (I was on dialysis for 3 - 4 weeks, my heart stopped, that sort of thing), and I spent two months in the hospital – most of the time in the ICU, sedated, on paralytics and intubated on a ventilator. Now I have scarred lungs, COPD, asthma, muscle weakness, nerve damage, problems related to brain injury and PTSD. It's just shy of three years and I am still trying to recover from the after-effects of the diseases and also the damage caused by the treatment. No complaints, just the truth; sometimes when they save your life they do some damage.

Just saying some of those things about myself is hard. This is, in many ways, still unreal to me. That's part of what I'm doing with this blog: trying to make it more real.

Now, I am not a doctor, so take nothing I say as medical advice.

I repeat: this is not medical advice. It's a personal blog.

I am offering my personal experience and hopefully encouragement. These types of illnesses are things that most people never hear of. I certainly didn't know about ARDS until I woke up in the hospital and my wife told me about it. You can feel as if you're the only one who has ever gone through this and feel isolated. That doesn't mean that there aren't thousands of other people out there who have shared the experience. It's hard when you can't find a doctor who can help you because many doctors never see patients like us. I just want to say to anyone looking for information that you're not alone. I may not be the best source of info, so search online. I'll do what I can.

I'm just lucky to be alive. I know that when you wake up to find yourself disabled it isn't easy to see the good in it all. You're life gets turned upside down and it's all out of your control. The simple things of daily life can be a challenge, but I’m alive. Right now I'm trying to rebuild my life and recognize what I still have. You can lose a lot to disease; ARDS especially can take so much from you. I realize that there are others much worse off than I am. I am not the person that I was, but I haven't lost everything. It's hard for me to accept the very things that I am saying, but that's what I need to do.

I am further along with that now - so far I'm still recapping and trying to tell other people that there are others out there like them.


To be continued.

Not quite an introduction

Hi, I’m new here.

Just ignore the boxes, I still have a few things to unpack. Watch out for the extension cords and, uh, don’t step on that, I think it might be alive.

For those of you who know me, and you know who you are - who are you, by the way? - the first posts here will not be revelatory, not much, anyway. I'm starting from the beginning so that I can get my history down here. I will try to get up to the present as quickly as possible.

For those of you who don't know me, and who are wondering what the heck is going on here, first - and to all - welcome.

I want to write a bit about myself so that I can get some benefit from venting, and so that others can learn that they are not alone in a similar experience, and maybe to learn from others who might happen along here. I will eventually write about just about anything, but to start off it’s all about me.

So the first few posts will most likely be somewhat medical in nature but nothing too graphic. I may burst out into some sort of political or philosophical or just manic rant later on, though, so bear with me.

More to come.