I did skip it this year

In case you were wondering at the lack of posts about my illness and hospitalization, which in the past I did on the anniversary dates of specific events, I did intentionally avoid blogging about it this year.

I was going to post on Sunday about the day I came home, because that was a great day, but I decided to keep silent – until now, which is just in case anyone was wondering.

I just wanted to try to think about other things.  To be honest I did think about it, but I didn’t focus on any of it which I would have done if I were writing a post.

I don’t know if this was a better approach or not.  It helps to let it out and writing about it actually can give me some distance from it and internalizing it is the hard part, but I needed to try this approach to see how I felt after the two months was over.  When I figure out the results I’ll let you know.

September 30th, 2005, revisited

Home.

This is the third anniversary of me coming home from the hospital.

My wife came and took me home from the physical rehab hospital. It was a gorgeous day. It was cool and sunny, with high white clouds in a bright blue sky. It was wonderful.

All I wanted was to be home with my wife, and the sheer joy of riding in the car with her is hard to describe. Somehow I knew, I felt, how long I had been in the hospital. I had only been conscious for part of the time, but I had experienced the whole thing. I knew that I had been away. I wanted to be home. I wanted to be with my wife. Finally, I was. Just being in the car and enjoying the sun and the Autumn air, sitting beside my wife, being alive and going home, was all that I could ask for.

I was going home.

I am home, now, with my wife. What more could I ask for?

Mind like a steel sieve

Oops. I said that the 22^nd was the day that I left the ICU. Nope. I left the ICU on the 17^th. The 22^nd was the day I was supposed to be transferred to a physical rehab hospital, which happened on the 23^rd because a bed wasn’t available on the 22^nd.

Oh well. Don’t know where that came from.

September 22, 2005, revisited

You may have noticed that I haven’t been posting much. I decided to stop the hospital update stuff. While I think that sharing my ICU experiences may help some people, I don’t think that the minute details are that important. I’ll mention a few things here, and if anyone wants to know more just ask.

I want to say that I have great respect for the nurses who work in the ICU, the doctors as well, but they come and go and the nurses are there all shift. The environment is designed to facilitate caring for critically ill patients; it is not congenial to normal living. There is something called ICU psychosis that affects patients, and the nurses are not immune to all of the effects. One of the things that can get to the nurses in the ICU is that their patients are so bad off. By way of evidence, I offer the following.

This is the day I was moved from the ICU to a regular room. Now, I understood that this was significant, but all I was doing was lying in bed. The nurses on duty told me I was going to be moved, and then when everything was set they came in to get all my stuff together – cards, the electric razor my wife bought for me because I was on blood thinners and a regular razor was a big no-no, a special card that my wife had brought for me, and there was the Black Knight that was watching over me.

Other ICU nurses started stopping by to help, but there wasn’t room for them. I didn’t really understand why they were all so excited. When they wheeled me out of the ICU space and over to the elevator on the other side of the ICU, every nurse working there said hi and wished me luck and congratulated me on getting out of the ICU, and they were all smiling like crazy and everyone knew me. Even the guy cleaning the floor knew who I was and was smiling and wishing me luck and all. I did not understand what was going on.

OK, maybe I’m dense. I had been in that ICU for 6 weeks (the first week was at another hospital), and I had been almost dead. They all knew that. I had been there so long everyone knew who I was. They all knew how sick I had been. They all knew that I almost died. They don’t see people that sick get out of the ICU that often, and when they do, they end up back there again. I was getting out because I had recovered and they knew that I was going to make it. They were all happy to see that I had survived. They were happy to see me going to a regular room. It was a big deal.

I think I’m beginning to get it.*

In my defense, I was still pretty drugged up, which not only kept me from worrying too much – I just kind of accepted everything and took it as it came – but may have made me slow on the uptake. At least that’s my story and I’m sticking to it.

And I still say that there was a cat in the ER.

*Yeah, I’m slow, I’ve had stuff on my mind.

September 9th, 2005, revisited

And you thought that I had forgotten. Nope, just waited until now.

There was one other milestone a few days ago, which is when I got off of dialysis after about 5 weeks. It’s a significant day, but I didn’t want to bore anyone with too many posts like this. But I do want those who may be interested to be able to read about the important parts, the major events that maybe we all share, the things that have redefined our lives. So on to today.

I think this is the day they did the tracheostomy. More to the point, this is the first day that I have a memory from. They started taking me off of the sedation a few days earlier, but after having that much in me for so long, it took a while to wear off enough. In fact, some of the effects lasted at least a year. But at some point on the 9^th I woke up enough to know that I was awake.

I remember two things, the first two things that I remember anyway, and for me they sum up the whole thing. I woke up, I saw my wife, and she told me that it had been six and a half weeks, and New Orleans was gone.

Everyone thought that I would be out for maybe three days. Somewhere in my head I knew that, and when my wife said six and a half weeks I was, well, I don’t think that there is a word for how I felt. Stunned works. With flabbergasted thrown in. And confused. I couldn’t believe it. I’m not sure I can even now. It’s too outrageous.

As for the New Orleans thing, well, I don’t think my wife said it like that, but I remember those two things so they get stuck together in my head. How could I have been under for that long? How does a city just disappear? Maybe you can understand my confusion.

Now, I’m not entirely sure that my memory of my wife telling me this is from this day. She told me several times and since I remember the 9^th I think of the memory as being of then – I put the two first memories, day and event, together. The truth is I don’t really remember that it was the 9^th. My first memory that stuck, the day that started a return of consecutive memory, was September 12^th. I remember things sequentially from then. I do remember that I was awake for three days where my memories were disjointed; I didn’t remember things in any particular order. I specifically remember one time when something happened and I thought to myself that I would remember it, but out of order. My brain was so mixed-up it noticed that it was mixed-up even in a mixed-up state. I don’t actually remember what that event was, though.

So I have a few memories scattered through the 9^th to the 11^th, and I’ll share some of them over the next few days.

August 6th, 2005, revisited

I am a day late with this and I apologize. I wasn’t going to post about the daily events of me in the ICU, but then I remembered an important date.

August 6 was the third anniversary of the day I was transferred from one hospital to another.

That in and of itself was not anything that I was going to post about, but I remembered something that needed to be said, and I am ashamed that I did not do this sooner. This is the third anniversary of the second time my wife saved my life that year.

At this point I already had ARDS and sepsis on top of the Legionnaires’ Disease and my body was shutting down. My wife is very intelligent and perceptive, and when she saw the numbers for my kidney values, the blood work that indicated how well – or not – my kidneys were functioning, she knew how bad it was. The doctors were saying that I was doing bad but not that bad, but she knew that my kidneys were failing. They said I would need dialysis, but they didn’t have the right equipment at that hospital, but my transfer could wait until Monday.

You see, it was Saturday, and the doctors just didn’t want to be bothered. By Monday I would have been dead.

My wife spent something like 10 hours on the phone, making dozens of calls to doctors and hospitals trying to get me transferred to a hospital with continuous dialysis equipment. The nurses at the hospital were quietly encouraging. They had hinted that they thought that I needed to be transferred and they were cheering my wife on as she hounded the doctors to get them to do what needed to be done. They practically cheered when she did it. Apparently it is not common to transfer patients on the weekend – patients may die but at least the doctors aren’t inconvenienced. Assholes.

First, not having a dialysis machine that is needed to save the life of a patient in the ICU who has sepsis, which is a very common problem in ICU patients, is criminal. The other campus of the hospital had it, which meant that they could claim to have all that equipment in the hospital with that name, but that meant transferring me, which they didn’t want to do.

Not wanting to be bothered transferring a patient because it’s a weekend is criminal.

We knew from a friend who is a nurse that there was an ICU bed available at a good hospital not too far away. But it was being held by a prominent doctor in case he wanted it for one of his patients. Not a patient that needed an ICU bed and care, just a patient who would want special care to stroke their ego. Criminal.

It was also almost impossible to get the doctors to call the other hospital to arrange the transfer, even after my wife found an available ICU bed. Criminal.

From Saturday morning until late evening, my wife was on the phone to hospitals and doctors and friends and she did the virtually impossible: she got me transferred. It was supposed to happen by 10PM, but didn’t happen until 1 or 2 AM. First they said they couldn’t have me and all of the equipment in the helicopter because it would weigh too much. Right, the extra weight of a portable ventilator would push the helicopter over its usable limit. It was an insurance worry. They weren’t sure they were covered for the procedure – me on the vent, and having a respiratory tech in the helicopter.

Finally I was transferred in an ambulance. And here I must commend the respiratory technicians at the hospital. They knew how bad I was and they did everything possible to insure that I was not injured during the transfer. I needed high pressure ventilation, but a standard ventilator wouldn’t fit in the ambulance. There’s a lot less room in there than you might think, and I was too unstable to risk manual ventilation. One of the techs remembered that the hospital had recently acquired a high-pressure pediatric ventilator, which was small enough to fit, so he went and got it.

So, on a Saturday night, my wife got me transferred to another hospital where I was admitted to the ICU, and immediately put on dialysis. Like I said, she saved my life.

Just as an example of my wife’s determination and ability, she actually got in touch with the head of the ICU department at the new hospital. This may not sound like much, but he is an internationally known leader in the field of critical care. He runs national programs on ICU care and new methods to increase survival. His reputation is such that he has been called on to treat royalty. He gave my wife his private cell phone number so she could call if she needed anything.

My wife is an amazing person, but I repeat myself.

August 2nd, 2005, revisited

No, not every post is going to be a revisiting of a day from 2005. For one thing, after today I don’t remember anything until September. For another, I doubt that anyone cares that much about it and I don’t want to dwell on anything. I just wanted to make a point of noting the significant dates this year, mostly because this is the start of this blog – more or less – and I also wanted to collect the information in one place where people could see it if they wanted to. So here’s another.

This is the third anniversary of the day that I was intubated.

I remember a conversation, only vague images really, but some of the discussion. Someone was explaining that I wasn’t getting enough oxygen and they needed to do something to help. They said they could try a CPAP machine, but if that didn’t work they’d have to put me on a ventilator. The CPAP was like trying to breathe with my head hanging out the window of a car doing about 95 mph. I couldn’t tolerate it, it was worse than no help at all.

So there I was, facing intubation. It’s hard for me to explain why this would be so hard for me. Mostly it’s the idea of having something in the way of my breathing. Yes, I know this was meant to help, but having an obstruction in my throat just doesn’t seem like it would help. But I knew, at some fever-addled level, that there was no choice. I told them to go ahead. I sort of remember that.

I know that I said that I wanted to be completely sedated before they either intubated me or used a paralytic. My wife made sure that they did that and that there was no pain (I may have asked about that, too). And she tells me that I also told her not to let my mother see my like that. I don’t remember that but I can believe it. Eventually she did see me that way because it lasted a lot longer than the three days everyone expected.

Three years ago today I was put on a ventilator. I have to think about that for a while.

I feel much better today than I did then.

August 1st, 2005, revisited

Today is the third anniversary of the day I went into the hospital.

My wife finally dragged me to the doctor, who took one look at me and got a pulse oximeter. I guess I looked pretty bad. My oxygen level was 87. At the time I didn’t know how bad that was, but I could tell from the Physician’s Assistant’s expression that it was not good. I was trying to will it to go higher, but that didn’t work. She told us that we had two choices: drive ourselves or take an ambulance but I had to go to the hospital. We decided on the ambulance so the PA called 911.

I don’t remember much else from that day. Well, I remember one thing. I was very hot, which is not surprising considering I had a fever of at least 105. I had a small hand-held fan that I was holding on myself, and the batteries were running down. I was desperately in need of that fan. I could not imagine surviving without it. So I asked – well, I probably begged – my wife to get me some new batteries.

I thought that I was laying on the sofa in the living room and all she had to do was walk into the kitchen to get me some batteries.

I was actually laying in a hospital bed in the ER. No one had any batteries. My wife had to leave the ER, drive to a nearby WaWa, buy batteries and then get back to me in the ER. I did not know that. As horrible as I felt I would never have asked her to do something like that, but I did ask her, and she did it. Have I mentioned that I have a wonderful wife?

I have a wonderful wife.

This is also the third anniversary of the first time that year that my wife saved my life. If she had not forced me to go to the doctor, dragging me there, I would have died lying on the sofa at home.

She really is amazing.

July 26th, 2005, revisited

Three years ago today I started to feel sick.

My wife and I had taken the cats to the vet for a routine visit. We left the vet late in the day, but it was still light out. The sun was low in the sky, but the sky was still blue, the clouds lit from beneath in that nice burnished orange from the setting sun. It had been a warm, somewhat humid summer day, and the sky was full of clouds. I can see that image in my head.

As we left the vet and loaded up the car with cats, I was feeling sick. Nothing too bad, just a little weak and a little light-headed. I was hoping that I was just tired, but I knew that I was probably sick. So, since my head wasn’t very clear, I asked my wife to drive home and I got in on the passenger side. There was nothing remarkable about the day at that point. I don’t really remember anything else from that day, and I wouldn’t expect to. It was just a Tuesday night.

Nothing remarkable at the time but as I sit here typing this I am beginning to shake. I have been trying to get my head around what happened to me, and lately I have been doing better at examining things more closely, as a personal experience and not just an abstract memory. The better I get at that the harder it is to face.

It is hard to accept that I almost died. It is even harder to try to accept it. I need to face this and I do not want to. I should go on and work this out, but I can’t. I don’t want to deal with the consequences right this minute. I’m going to stop now.

July 16th, 2005, revisited

Three years ago today I got sick.

Sometime in the middle of July 2005, around this date, I inhaled a large quantity of legionella bacteria and they started invading the cells of my lungs.

I didn’t feel sick yet. I had no idea what was going on inside of my body. I wouldn’t feel sick for more than a week, and it would be considerably longer before I knew what was going on – or had been going on.

But for now, back then, I was unaware of what was to come.