Ow...ow...OW!!!

This will be a short one. It was home repair day on Saturday, as we had to take off the heavy duty storm door from the front of the house. It got caught by a gust of wind over the winter, ripping the piston off, and causing the hinge to be misaligned. The door would close, but not the way it should, so we removed it, removed the hinge, banged the hinge straight again, put it back on the door put the door back.

Now, this is a fairly heavy door, even with the screen and lower window removed. It is something of a security door that the former owner put on. He was a boriqua from the city, and as soon as I saw it I knew why it was there. This is a commonplace type of door that one sees on homes in the inner city:I actually like it, but taking it off the frame can be a pain. Putting it back was a literal pain.

I have an old injury from my paramedic days, when I subluxated both my shoulders from lifting a patient. In short, I severely strained (but didn't tear) both my rotator cuff muscles in both shoulders back in 1992. A lot of physical therapy got things back to normal, but it would still bug me from time-to-time over the years.

Well, lifting the door back on to the frame I think, aggrivated the injury in my left shoulder. The right one is fine, but I feel the same kind of pain I did back in '92. I think that unless this resolves over the next 2 days, I am off to the doc for an x-ray.

Shit, I hope I didn't tear it, though I suspect I would be in even more pain and have less range of motion than I do now.

In the meantime, here are some garden pics. the irises are particularly beautiful this year:

I am a Scrabble board.

While I was awaiting the call for my liver transplant, I remember making a series of top ten lists; in my case, the "Top Ten Ways To Know You Have Been Living With Liver Disease Too Long." Among these little amusements was:

"You think that your blood test names (ALT, AST, CREAT, HbG, etc.) are perfectly acceptable words when playing Scrabble."

Let's face it: when you live with any form of chronic disease, whatever it is, your life tends to be reduced to these acronyms, from time-to-time. These days however, I've needed to learn a new one: HbA1C. (Gycosylated hemoglobin A1C.) Since I became a diabetic last year, this is an important test that I get done every six months, and is a better indicator of how well my blood sugar is being maintained, especially since I am on insulin. Today I went to my primary doc for my six-month check-up, and all is hunky dory. My A1C is right where it should be, and he is pleased with the way I have been controlling things. So, while I hate sticking myself with needles, it has been a good way to keep things as they should be. Small sacrifices, I suppose.

Now, the one thing that I have been trying to overcome is the disease of procrastination. I suffer from an extreme form of this disease, and have been desperately trying to overcome it for some time. To that end, a colleague at the conference I attended a week or so ago recommended this book:

I am starting it today, as in right after I finish this post...if I don't procrastinate about it.

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.

Weapons of dental destruction.

So, in between hacking, coughing, and general lousiness, I did have to take a scheduled trip to the dentist yesterday. We transplant recipients have to be careful about many things both medical and dental, especially since some of the medication we're on can cause issues when it comes to the latter. I take a small dosage of Prednisone, which is a steroid, and while I won't be hitting longer home runs, it can cause problems with bone loss if you are on it for long periods of time. (I've been on it for 11 years come this August.)

As such, and for other reasons, good dental care is a must. I went yesterday, feeling like death only partially warmed over because to reschedule would have meant a longer than a month wait. Good thing the techs who scale and clean my teeth wear masks and gloves.......in this case for their sake, not mine. All went well, I won't be required to leave my teeth in a glass at the bedside table anytime soon, and I was given some new dental tools in which to keep the choppers in a minty fresh state.

First, there was this nifty little device:

Now, aside from looking like a tiny tree on a stick, this little device gets in between the teeth to get at the places where, if you tried doing that with your toothbrush, would require several thousand dollars worth of orthodontia, not to mention a gross of pain medication. It really does work quite well...

Now next, we have this:

Maybe it's just me, but this looks suspiciously like a toothpick. It is made of wood, is flat instead of round, and you won't find them on the table at your local diner. In fact, aside from your dentist, you can only get them at the local pharmacy. (Chemist, for my Brit friends.) Of course, this means that these fancy toothpicks cost more money and you get less of them. (They are called Stim-U-Dents, as their purpose is to stimulate the gums.)

If of course, you want to have the appearance of being environmentally friendly and save the life of a tree, you can now use these brand-spanking new devices, fresh off the assembly line:

These do the job of the aforementioned stimulator's, but are probably more expensive, as they are new. We'll see. I have the choice of killing a tree, or putting more plastic into landfills, as these are not biodegradable or recyclable. So many choices! ;-)

So that is all from the dental front, but oh, just to update you on my scoping of a few weeks back; everything turned out fine. As a matter of fact there actually has been improvement. The new drug they put me on for the colitis last year is working nicely, and there is less inflammation than in the past. My GI doc was very pleased, and I was as well.

In through the out door........

Today is the day for my yearly trip to the GI clinic where I get my innermost innards scoped, cleaned, and given a good once over. One of the other things that afflicted me in addition to the liver disease was a case of ulcerative colitis, requiring a yearly visit to have my pipes inspected.

Anyone that has ever been through this knows that the procedure itself is not bad, especially with the fun sedation that they give you. It is the best legal high I have ever had, especially as they give you Fentanyl as part of the cocktail. I first encountered this wonder of modern medicine while in the ICU after my transplant. Simply put, you can get hit by a truck while on this stuff and just not care.

The not so fun part is that you have to practically starve yourself the day prior, save for stuff like broth, tea, etc. You also clean yourself out......thoroughly. This involves something akin to flushing a car radiator. You drink this concoction that winds its way through you, causing a war inside your large intestine, resulting in multiple trips to the porcelain god.

I always prepare well for this by having large stacks of reading material in the john at the ready.

So, please think good thoughts for me as I go off to be given the yearly seal of approval......and what I wouldn't give for a corned beef on rye about now........

Parts is parts........

"It's too bad she won't live.....but then again, who does?" - Gaff.

I have a few links on this blog to organ donor organizations that I support. I support them with good reason, as 10 years ago, my life was saved due to the generosity of one family. There were actually 5 of us that benefited as a result, and while I am not sure of the status of the other 4 recipients, I'd like to believe that they are all as alive as I am right now.

I will try to encapsulate the story of my liver transplant into one, easy to use pill. (Sorry, but when you are on the daily doses of medication I am, you tend to think in pharmacological terms.)

In 1985, at the age of 26, I was diagnosed with primary sclerosing cholangitis, a degenerative disease of the bile duct system of the liver. I lived with this disease for 12 years, and began to see the signs of advanced liver disease somewhere around late 1995, early 1996. I was placed on the transplant waiting list in February of 1997, and at that point, had about a year, to a year and a half to live.

Dealing with death as I did all throughout my EMS career, it took on an entirely different approach when it is the possibility of your own death that was staring back at you. The wall that helps you to deal with the death of patients crumbles easily. Your emotions run so wildly, that any of the scariest roller coasters in the country are nothing in comparison. I don't think I necessarily went through a Kubler-Ross type of event, but at the same time, you do find yourself looking in the mirror and wondering why all this is happening.

As the disease progressed, I began to exhibit all the hallmark signs of liver disease; jaundice, weight loss, loss of hair, etc. Things finally got bad enough in late July of 1997, and I was admitted to Mt. Sinai Hospital in Manhattan to wait for my shot at a liver. (Being put in the hospital is one criteria for being moved up on the transplant waiting list.) I still understood that it could be months before I received a transplant, but at least I had a shot. One week after admission, it happened, and on August 1st, I received my gift of life.

There is certainly more to this story, as it has been 10 years, getting closer to 11 now, since that momentous day. There have been bumps along the road: a rejection episode in 2002, an infection last June that almost did me in, but all-in-all, I really have no cause for complaint. I have 10 years that I might not have had otherwise. I have been able to see my niece, who was born 36 hours prior to the transplant, growing up faster than I care to think about, and I have been able to accomplish things I never would have had the opportunity to do.

More transplant stories later. For now, just remember, "Don't take your organs to heaven. Heaven knows, we need them here."

Now, the procedure is not quite like this, but, laughing a lot helps one get through such an ordeal....Fortunately for me, they did use anesthesia.....(Warning: Really not suitable for kids, but tame compared to other things.)