The Revolution

Just finished reading Sandor Katz's book: The Revolution will not be microwaved: Inside America's Underground Food Movements. What a great book! I felt like here's someone who understands what's going on in the country and is ready for it, at least where food is concerned. Particularly poignant was the chapter on neutriceuticals in which Sandor talked about the precariousness of being tethered to the health care system via prescription drugs. Sandor is HIV+ and takes several different drugs that cost much more than anyone should have to pay to stay alive. Why is this poignant? Because I'm in the same boat. I too am tethered to the health care system via prescription drugs and it sucks! I don't pay nearly as much as he does. His meds are subsidized by the state he lives in, mine, luckily, are part of my employers health care plan. So we're both lucky. But what if that state support goes away or I lose my job? What then? No one should have to live with this kind of weight on their shoulders or over their head. Unfortunately, many do and many others are not as lucky as Sandor and I are.

Happy Kidney Birthday - 24 years

Something rather strange just happened. I don't usually "surf" the web, but tonight I did.

I receive a weekly email called Neat New Stuff from a fellow librarian by the name of Marylaine Block. She scans the web for interesting sites and shares them with anyone interested. She posted her weekly list of a dozen or so sites this evening and one of the sites was organdonor.gov, a U.S. Government website focused on organ donation and transplantation. I am interested in this site because I am a kidney transplant recipient. So I looked around and found out that if you need a kidney and are put on the waiting list you will wait an average of over 1100 days.

I was put on the kidney recipient list in December 1983, 6 months after graduating from high school. By then I was feeling run down and enervated. I was living with my parents still and I sat and read most days in the flower pattern rocking chair that I swivelled to face the front window to take in the low winter sun. I assumed that I would have to wait quite a while before I would get a call to come to the hospital. At that time the waiting period was considerably less than 1100 days. But in the late evening of January 31, 1984 I received the call that there was a kidney for me and that I should come to the hospital as soon as possible.

What was so strange about the web surfing I mentioned above? It was that I had totally forgotten about my kidney birthday, yet here I was surfing the web for links about transplantation. Celebrating my kidney birthday is a rather low-key affair, usually nothing more than a reminder of what happened and how lucky I was. Easily forgotten. But what I'm not factoring in is that without that transplant I wouldn't be alive. I received a cadaver kidney, meaning someone had died and their kidneys were donated so that someone else could live a longer and healthier life. What a wonderful
gift that is!

Something else I learned from the organdonor.gov website is that organ donation can be as easy as filling out a form online. In New York State it's that easy. To find out how to register as an organ donor in your state visit: http://www.organdonor.gov/donor/registry.shtm

Adventures in Healthcareland, Part 3

Well, as you can see I made it out alive. Nobody told me till the last day I was in that I could unplug my ball and chain (the IV) and walk around on battery power. I also found out that someone from the TV and phone company come around everyday to collect $5.75
for the phone or $6 for the TV for rent for the day. That's outsourcing at it's best and no, I do want to miss the football games! I did have to rent the phone though as I had to conduct some work by phone (the other ball and chain). Anyway, only today did I call up my insurance company to find out if I needed to do anything about this hospital stay. They said I'm 100% covered. I didn't say anything for a couple seconds because I was so surprised that I would not have to face some obstacle. What a relief. This is how it should work for everyone not just me, a privileged white man with a cushy white collar job. It's just too bad the system doesn't work this well for everyone.

Adventures in Healthcareland, Part 2

Luckily for me, my roommate is sensitive to pain and groans a lot so the nurses come in to attend to him quite often and check on me in the process. But overnight it's tough to get a good night's sleep, someone's always there to take your temperature or check the IV, the my roomie starts groaning again. His percocet has worn off.

I awake in the morning to more groaning and other noises I can't place so I put in my hearing aid. My IV machine is dinging, a dinging at a high enough pitch that I couldn't hear it before. There's also a woman screeching over and over about being hungry. "I'm hungry. Can I eat please?" "It's time to eat. Can I eat please?" This goes on and on until she seems to break into sobs. No one responds that I can tell, apparently her laments aren't important enough to warrant action. Eventually she gets fed as do the rest of us. I get a liquid diet. I feel slightly hungry, a good sign, but still have a slight fever.

After breakfast my roomie starts in again with his groans, oy.....oy.....oy. At one point the woman was at it at the same time. "I need to go home. Call me a cab so I can go home." "OOY" "I need a cab to go home" "OOY" "Will someone call me a cab" "OOOY" and so on. I was tempted to turn off my hearing aid. But when the TV and phone must be rented, this entertainment comes cheaper.

Later, Phil stopped by to keep me company. We made friends with one of the nurses. She'd been working as a nurse for a while and told us that she'd worked at a posher hospital in Manhattan but found the patients too self-important for her. She liked the neighborhood feeling of this hospital. But she also shared something disturbing. She doesn't get healthcare insurance through her job. Is that amazing or what? A healthcare worker working with sick folks everyday, but doesn't get healthcare insurance for herself. OK, that's it for tonight. I'll try to finish this tomorrow so I can move on to other things. I hope you'll stick with me.

Adventures in Healthcareland, Part 1

Yep, I had an adventure in healthcareland last week and I had to take a couple days to recuperate.
I got the flu on Wednesday. Came home from work at noon and gradually felt more miserable as the afternoon wore on. I've had this flu before, one where my stomach is in active revolt and has pulled the switch on accepting any new donations. Phil took me to the emergency room soon after he came home around 7:30. I didn't think I'd be able to get up and around, but I did and made it to the hospital OK. Thanksfully the emergency room wasn't too busy. I have a trump card that I can play in the situations that gets me seen quicker than most folks. I let them know I'm a kidney transplant patient (which I am). Of course that wouldn't trump any true emergencies like heart attacks and stabbings.

Phil was upset that when I was asked about next of kin, I said him but was corrected that it had to be a family member. I gave my father's name and was asked what the phone number is and I said I don't know (and I don't). Maybe that got through. Anyway, stuff like that really rattles Phil's chain. Then later when the doctor came in he asked Phil if he were the father. Obviously we weren't giving an overt enough picture of a gay couple.

So they admitted me and I was wheeled up to a semi-private room on the third floor. My roommate was recovering from knee surgery and seemed to be in a lot of pain from all the moaning he did. By the time Phil left for the night I was still fighting a fever and nausea and now had an IV stuck in my arm. I soon found that a few things were wrong with my room. The call bell didn't work. The TV and phone had to be rented per day and the phone didn't even have a cord to the wall outlet. And that my IV was controlled by electricity, thus I was tethered to my bed pretty much, unable to go the the bathroom. Luckily, one of the nurses gave me a portable urinal, because I was getting saline in my IV, and a lot of it, and it was going through me without a problem. More later...