Sunday, November 23, 2008

There are no coincidences

So LAST Sunday I spoke in church about organ donation. Pastor Seth said about 3 minutes. Hah! Somehow I managed to stop speaking before anyone started yawning. Seriously, a lot of people told me I did a good job speaking and that they were going to put "organ donor" on their driver's licenses and so on. Which is nice, because I never look a positive affirmation in the mouth.

What really floored me is that one woman, who I've sat near and chatted with on occasion, came over during coffee hour and told me that her son was an organ donor last year, in the very same PICU where I used to work. We probably talked for half an hour, at least. She told me how hard it is, but how sharing his organs has given her some meaning, a way to cope better with having her only child die. I can't even imagine-I think about it and it makes me want to ground my kids for life so nothing bad will happen to them.

For me, as a coordinator, it was nice to hear that donating has helped her and I told her so. I've only ever seen families when their grief is still raw and fresh, so it was a blessing for me to hear her say that donating his organs is helping her heal. I've said it before and I'll say it again, donation is a solace in a time of mourning.

This past week I met a friend for coffee who is now the hospital services manager of the hospital where that very same PICU resides. She's having resistance, of which I am familiar, to donation. Not that the staff is against organ donation, theoretically. It's just that PICU people tend to be very possessive of their little ones and don't take kindly to OPO staff "hovering around". I told her I'd be available to talk to them, if she wanted.

So now I'm in church again today and the woman who's a donor mom and I sit together. While talking I mention the above to her. She got quiet. I didn't want to ask for her help, because she already told me that she doesn't think she's ready to talk publicly about it. But I can see she's thinking. After services, she tells me that if I ever need anyone to talk to the PICU staff, I can call her. I told her I'd take her up on it.

Because no matter how good I can gab, she's the one they're going to listen to.


My friend Ali works on a hospital ship docked at a port in Liberia. Recently, while visiting families out in the countryside, she joked to one woman that her baby was "so fine, I'm going to take him back to America." The woman untied the little one from her hip, handed her to Ali and walked into the bush without saying a word. When it was time for them to leave and she went to hand back the baby, the woman was sobbing.

Think for a moment what it could possibly be like to live in a time and place so hard that you would hand over your child to a stranger, like tossing a letter in a bottle out on the open sea. Was she thinking, as she handed over the child, that America was the promised land she'd never get to, but that her baby might have a better life there? Was she thinking that there would be one less mouth to feed? I don't know, I hope I never know.

It has made me think, as we enter the consumer frenzy we call the holidays, even more about what my values are and what my husband and I want to teach our daughter. The first Christmas she was here, all 2 1/2 months old, my husband announced that we would not pretend Santa Claus was real. Right from the get, he said, she would know he was make believe. I was appalled. No Santa? But, he's magical! Like fairies! Although the point may be moot (kids seem to have no dilemma with the paradox of make-believe being more real than reality), I think I'm starting to agree with him. I think I'm tired of the fairy tale Christmas.

I've long felt this way about weddings. Why would anyone spend tens of thousands of dollars, borrow it even, to live for one day in a way that is far above their lifestyle? Because it's the happiest day of your life? Well, if that's true, you marriage is going to be one long downhill of disappointment. But I digress. I don't feel a need to emulate the weddings of the British Royal Family and less and less I'm feeling a need to have a Currier & Ives Christmas. Especially when I remember that the reasons those Victorian Christmases were so lovely is at least in part because they had a lot of servants. Who worked on Christmas and didn't get to see their own families 'til the next day.

Bah humbug. So now I try and figure out what this season of peace and joy is supposed to mean to me. I spoke with hubby and said maybe we could take all the money we were going to spend on presents and send a big donation to a charity we believe in, like Habitat for Humanity or Heifer International. Wouldn't that be better than buying Aunt Carol another pair of slippers? But he likes buying and giving gifts for people. He loves it, in fact. It makes him act like a little boy and he tends to start buying early, like around Labor Day. He, once again, has the right point-it's about giving, stupid. While I ponder the moral quagmire, he's trying to figure out what he can get that will make someone else happy. So I'm starting with a small change. When the Pooter asks what Christmas is all about, we tell her it's about GIVING presents.

So, this year I'm trying to focus on what I can give. Not iPods and digital cameras, but what I can give of my time, my effort, my love. And if you want to know what to get me, I'd like every able-bodied adult to send $25 to a worthwhile, African charity AND spend 10 hours writing to your congressmen and senators why we should help the beleaguered continent. So no mother will have to choose between a life of poverty and handing her infant over to strangers. That's what I want for Christmas.

I'll probably get another sweater.

Tuesday, November 11, 2008

National Donor Sabbath

This weekend marks the National Donor Sabbath, created to bring the topic of organ donation into houses of worship. One of the biggest misconceptions people have is that organ donation goes against their religion. In fact, all major religions support organ donation. Want to see what your religion has to say? Go here. It's okay, I'll wait. Unfortunately, most people don't think about organ donation until they're in a devastating situation. And that's the worst time to make a decision. Quite possibly, there's someone in your neighborhood, in your schools, your congregations, your work place, who need an organ and you may have no idea. Or maybe you think, I'm going out with everything I came in with-let someone else donate. Well, less than 1% of people die in a way that their organs can be donated. As Rabbi Hillel said, "And if I am only for myself, then what am I? If not now, when?"

So, if organ donation has touched your life, get up and say something in church this weekend.

I'll be speaking.

Friday, November 07, 2008

The not so best phone call

We had wine with dinner, tonight, which is a very, very civilized way to end the week, even if all you're having is pepperoni pizza. ("Pepperoni?" My husband said, "You haven't ordered a pepperoni pizza in all the time I've known you." Well, that's my prerogative). Today started with a nasty gram from the boss: we all come in too late, leave too early and take too many frivolous breaks. For those (read: almost all) of us who come early, stay late and work through lunch 4 out of 5 days a week-we were pissed. Pissed enough to renew my BLS and see if the hospital down the street is hiring. Then by lunch time we were all friends again. Mostly.

Worst of all is that I had to write the "You better _____ by _____ or else" letters. Even though I deal with Post Transplant patients, we are all expected to pitch in with maintaining the wait list. Once you get on the wait list, for a kidney or panc, it may be years before you get an organ. In that time, the patients, depending on their health and needs, need to continue getting annual cardiac clearance, send routing labs in and come into clinic to be re-evaluated. Someone has to actually go through the list, figure out who needs what and when so that, when the time comes to transplant them, we don't suddenly realize that they need a pacemaker, ilio-femoral bypass or that their insurance has run out. So, driven by threats via email from teh boss, I had to scour a few charts and see why folks aren't keeping all their records up to date.

So here's the deal: folks get referred to us from their doctors when they need a transplant. Hopefully, they aren't on dialysis yet, maybe it's just looming large in their future. So they come in, meet with all sorts of professionals-surgeons, nephrologists, the financial coordinator, the social worker and last and most decidely least, the transplant coordinator. Then, once a week, we sit down as a group and decide who is eligible for an organ and who isn't. That's probably a whole 'nother post.

Once they're on the list, depending on age, health status and circumstances, they have to come in once a year or every other year for a re-eval. Annual retesting is also required, mostly cardiac testing. Folks who are on dialysis 3 times a week are getting reminded often when they need stuff and monthly blood samples are sent in, but the pancs are a different story-more on their own, so to speak. And, let me say, that the majority of people get things done in a timely fashion. For those that don't, we call doctor's offices for results, call the patient and remind them of what needs to be done and so on. I've been calling one woman for 5 months to get a stress test done or we can't call her in for a pancreas, should one become available. Remember, diabetes causes major heart problems. Another guy said he was going for a stress test in July. In August, his mother answered the phone and said he wasn't available. Now his numbers(all 3) have changed and I don't know how to get a hold of him, so I Fed-Ex'd a letter to his house, not sure if he still lives there.

I don't want to write the letter. You have 30 days to contact us or you're out. But, realistically, it does not speak well to his ability to take care of a donated organ (not that I'd be able to reach him I can't call him). The follow up is intense. We should have a slogan, "You get a new kidney, but your ass is ours!" Seriously, it's been 6 months and some of these people are like family, already.

ed note: started Atkins Monday, so that's the last pizza I'll see for a while. Pray for me.