Thursday, July 31, 2008

Signposting a life.

It is somewhat incredible as to how certain events in a life signpost that life. August 1st is an enormous signpost in my life. You know the kind. You round a corner and it hits you in the face, demanding attention. You need to pull the car over, and take stock of what it is saying.

I still remember the early hours of Aug. 1st, 1997, lying in my hospital bed at Mt. Sinai Hospital in Manhattan, dying of liver disease. I had been locked in a battle with an autoimmune disease for 12 years, and at that point it was winning. I reached the point about a week prior where they needed to admit me. My lab work was becoming worse and worse, and I could feel myself dying by degrees. My hope was hanging on the possibility of getting a liver transplant, and after 6 months on the waiting list, each day became harder to keep that hope intact.

I remember about the third or fourth day, having a bad bout of pain and nausea, going into the bathroom in my hospital room, looking at my emaciated frame. I'm 6'2", 175 pounds, normally. I was at 120 pounds at this point, my muscles being wasted away, 1/4 of my hair gone, and most body movements being painful in one way or another.

I was sick of being sick.

I just looked in the mirror, and pounded my fist on the smooth tile that framed it. I just wanted someone to make a decision. Transplant me or let me die.

I began to empathize with so many of the patients I treated that, for one reason or another, were in the same boat. I was always taught not to encourage such thoughts, but the only thing I could think of was that I could no longer remember a time that I was not sick.

Then, 12:15 am a woman walks into my room, waking me up from the sleep that I was desperately trying to get. Hospital beds are not comfortable enough as it is, even worse when your limbs and joints are so thin skinned. I was a little pissed that someone was waking me. "More blood work at this hour?" I thought. The words that came out of her mouth next however, did not seem real at first. I thought I had hallucinated them.

"We believe we found a liver for you." This woman would turn out to be my transplant surgeon.

I found myself flooded with a wave of emotion that I was not prepared for. I had been waiting for this moment, and it was here. I still didn't know quite how to react. Her next words however slapped a little reality into the situation.

"This still may not go forward. We are running our tests on the donor now, but everything looks good so far." This is not unusual. Transplants can be scuttled at the last minute because something goes wrong with the donor, a test comes back with something that prevents it, or a myriad of other reasons. I knew she was getting me ready for the best, but preparing me for the worst.

I immediately picked up the phone, called Mrs. N. Her voice was controlled, but I knew she was scared and excited at the same time. I then called my brother, told him to call mom, and then called my assistant from work, one of my best friends. (I was director of EMS at my hospital at the time.) I told him to call the boss, as she wanted to know when I was going to go in, my boss being the Executive Director of my hospital.

The surgery was scheduled for 7 am. The wife, my brother, and my mother arrived around 2 am. My brother had his hands full, as his wife gave birth 36 hours prior to my niece. Nurses, techs docs revolved in and out of my room. More blood work, bowel prep, (my first, and only meeting with an enema.) and a host of other things.

I then remembered that I wanted to have some fun with the surgeon and OR staff, so I got a hold of two loose-leaf size pieces of paper and a felt tip pen. On one piece of paper, I wrote: "THIS LIVER'S FRESHNESS DATE EXPIRES 8/1/97" and taped it to the right side of my belly, over my liver. On the left side, I had another piece of paper that said "OPEN OTHER END," with arrows pointing towards my liver. Too bad I wasn't going to be awake to see the reaction of the operating room staff, not to mention my surgeon.

6:30 am, and the stretcher comes for me. I kiss mom and brother good-bye. Mrs. N accompanies me down to the outer area of the OR, where she can wait with me until they are ready to wheel me in. A very pregnant anesthesiologist comes to ask me some questions. After she is done, I motion to her so I can tell her something. Surgery doesn't scare me; anesthesia does . "Don't fuck up." I tell her. (She knows I am a paramedic and hospital department director, so she just smiles. She knows what I mean.)

7:05 am. I kiss the wife good-bye, as they have come for me.

9 hours later, I wake up in ICU on a ventilator, (normal for this) and my life has been saved.

11 years later, I have been given time that, all other things being equal should not have been. I wonder what will happen tomorrow? I'll keep an eye on those signposts.


AnneDroid said...

I've been feeling fed up this week but you've just put everything back in perspective and I feel so much better. I only had time to read one or two blog posts before work this morning so I'm glad I picked this one.

Thanks for telling your story so simply and powerfully.

VioletSky said...

So close to your birthday too - two celebrations! And every detail etched in memory.

Dragonfly Dreaming said...

I don't have anything perverted, kinky or witty to say about this honey.

So, instead, I'll take the sap route. If anyone deserved that second chance it's you. The world would be a little dimmer and a whole lot less entertaining without the likes of you. So, rock on. :)


battlemaiden said...

Thank you for sharing something so personal. I know that particular life event has fostered much compassion in you. :)

Peter said...

A touching story (it just dawns on me that I don't know your first name), especially given the fact that so many people on the waiting list don't make it.

On a local note: like you know, in Belgium everyone's a donor (unless you object personally in writing during your lifetime, and have that release registered officially. Virtually nobody does so we're basically all donors).

The painful part of it all? More and more "new Belgians", (especially Jewish and recently a tidal-wave of Muslims) are signing "do not remove any organ after my death" forms.

No matter their "religious" objections, these "do not remove" objectors visibly have no empathy for their fellow human beings, focusing on "me and my" rules.

I wonder what a Muslim Belgian would say when the same rules were applied when they were in desperate need of a vital organ to save their own life.

Anyway, I'm glad to read you're grateful that someone in the US was kind enough to make this simple gesture that saved your life.

Jay said...

What Annedroid said.

I'm so glad they saved you. I love the notices you taped on yourself - did you ever get any feedback?

It's interesting what you say about surgery not scaring you, but anaestheia doing so. I feel exactly the same, but only about my dogs. I hate them being put under, not for the sake of the surgery, but because I fear for them not surviving the GA. Greyhounds are not good at metabolising some anaesthetic agents.

Mr. Nighttime said...

Anne-I'm glad I made you feel better, as I had plenty of those moments myself.

Violet-Yeah, pretty wild huh? I celebrated my 38th b-day in the hospital a few days prior.

Claudia-Not even a little kinky? ;-) That's ok though. I am just blissfully happy you stopped in, and glad we found each other. I'm glad I'm still around to enjoy you and your humor, your wit, and your world view.

battle-I thank so much for that. One of these days, you, me, and Ryan will have to get together for coffee, or something stronger.

Peter-The bigger problem is that no major religion objects to organ donation. Even the Orthodox Jews in Israel don't object to it, so anyone from any of those groups who say that it is against their religion have no fucking clue what they are talking about. The halakah (Jewish religious law) against removing body organs prior to burial was overruled by the halakah of saving human life.

I hate ignorance, especially when it is religiously motivated.

Anonymous said...

Thank you for sharing, Mr. N. You get to celebrate two birthdays each year. You have been given a very special and precious gift.

I have not signed a donor form yet. After reading this, I'm seriously considering doing so.

buffalodickdy said...

I had a health problem once that almost killed me- but didn't. Since that time, I have continued to try and enjoy life!

PEACE said...

Thanks for the uplifting story. People don't know how horrible it is when you are the one on the waiting end of things. My secretary's mom needed a kidney transplant for years. They finally got one and it was being flown in. Her mom was already at the hospital being prepped when the bad news came one got the cooler off the plane and it had already departed for its next destination... Alaska! Two years later she finally got another.

As I prepare for my first chemo treatment next week, I have been really grateful for the positive stories I have found, it really helps to know, it's not a forever thing, but just one of the medical miracles needed to just get through to continue with the rest of my life.

Retiredandcrazy said...

Thanks Mr N. Maybe there is hope yet. My husband is in the middle of chemo and is very poorly. I only hope that he is around to tell the tale in 11 years too. Enjoy.

Tash said...

Happy belated Signpost day! Here's to August 1st! Thanks for putting things in perspective.

Mr. Nighttime said...

Buffalo - Isn't it amazing how those kinds of experiences change one's perspective.

Peace-Oh my, and I hate to say this, but I have seen that happen in the past, with organs being left behind by accident I was an organ procurement coordinator for a year here, working with the transplant on recovering organs from donors. Essentially, I was a surgical coordinator/second surgical assist, amongst my other duties. Thankfully, that never happened to any organ that I recovered.(Glad to hear she did eventually get her organ.)

I wish you nothing but the best at the start of your chemo,

Retired - Thank you for your thoughts, for stopping by, and I wish only the best for husband.

tash-Thanks for the good wishes. We in the transplant community refer to the date of transplant as our "Re-birthday."

gemmak said...

Right now I can't think of anything profound to say...other than this is profound and amazing! :o)

I have a friend who is a recipient, I wish she could view her situation as you do.

BenefitScroungingScum said...

These dates stick with us forever in a way the good times should but seem more blurred as the years go by. I'm prevented from being a donor by having EDS, but was on the register before I found out.
I'm so glad you were given this gift, hugs BG x