“Carve your name on hearts, not tombstones. A legacy is etched into the minds of others and the stories they share about you.” ― Shannon L. Alder
Friday, April 18, 2008
End of the Week Update:
Yesterday was worse and I had to stay late to catch up. My day was going swimmingly until I had to take a 2 hour road trip to specials AND got an admission, a fresh post-op, at the same time. And I pissed off the fellow, who's already pretty pissy if you ask me. Ah, well. I did get my starting date, finally, for the new job, April 28th. Then I guess I can start bitching to the anonymous innernets about that job.
Anyhoo, now that I've vented-thanks innernets!- We've got two carnivals this week:
Grand Rounds was Tuesday at Women's Health News. Next week it's at Dr. Val.
Also, this week, Change of Shift was up at Nurse Sean's.
Enjoy the reading...I'll be back at work all weekend.
Thursday, April 10, 2008
Legacy

It’s the story of an average girl, from an average family. By all accounts she was funny, even irreverent, smart, sassy and full of energy. She was opinionated. She had a lot of friends. If you were to look into her future, you might see college and a career, a family, some kids. Maybe she had something really big coming down the pike-like she’d write a famous novel or develop a cure for a major illness. At 17 years old, on the verge of womanhood, I’m sure she thought about her future a lot.
I’m not sure any of us understand why sometimes children die. I like to think that the children who come into our lives only to be taken away too soon come with a purpose. They teach us to love, they teach us to make every day count and most of all they teach us that to be human is an impermanent state, as fleeting as butterflies. Or perhaps that’s just my rational mind searching for meaning to a meaningless tragedy. In any event, on this day eight years ago, this 17 year old girl died.
I will never meet Kari. At best, I can get an idea of who she was and who she might have become through the people who knew her. Yet, this 17 year old, who died eight years ago today, has touched my life. She’s touched a lot of lives, people that she never knew in places she could never imagine. Think about it-if you died today, do you think that your life would have meaning to anyone beyond your circle of family and friends? So many of the things we do, as human beings, are done to insure that something- some part of us, will live on after we die: great works of art are created, books are written, children are born. You can take the poorest among us or the most powerful and all want to be remembered, to leave behind a legacy.
If Kari had lived her life exactly as she did, she would have left behind a legacy of love and happiness and that would have been enough. But Kari did one thing more. She had already told her parents that if she died, she wanted to be an organ donor. Sure, her parents probably thought, never thinking that they’d actually have to honor that request. But they did. When Kari died, someone had to approach that family and ask them, in the midst of their grief, to donate her organs and they, in the midst of their grief, said yes.
You would think that that would be an easy and straightforward decision. But her parents didn’t have to say yes. There’s also a possibility that her parents wouldn’t have been asked. The road to requesting organ donation is more complicated than most may realize. The hospital may not have called in the referral to the organ procurement organization. They may have said to the family-there’s nothing more to be done, let’s just pull the plug and let her go. The nurses may have thought-what’s the use, this patient is dead or going to die, and not been vigilant in maintaining her organ function. Instead, in those hours as Kari became brain dead, calls were made, support was provided, information was given and a whole host of people, some of whom will never realize it, made the organ donation happen. From many, to one, back to many, Kari’s donation became like a stone thrown in a lake, the ripples carrying the legacy of her life farther and farther from its original impact.
I know about Kari because her lungs now live in my friend Steve. I know I talk a lot about the fact that people shouldn’t have to be proven “worthy” in order to receive a transplant, but if there’s a person out there who’s more worthy of those lungs, I’ve yet to find him. In eight years Steve has become the head cheerleader of the “Keep Kari’s Memory Alive” team. I always knew he was filled with gratitude. Although he’s very vocal about how much his transplant has transformed his life, it was his unspoken actions that showed me the depth of his devotion: on his key ring is a little sandal with one word on it-Kari.
I don’t know how many people Steve has touched in his life, but if you walk the streets of Chicago with him, you’d think he was the mayor. Someone once told me that gratitude is an action word and watching him in action is a lesson in how to live life. When I get to feeling sorry for myself, I write to Steve and soon I’m wondering what the hell I’m moping around about. And Steve is one person. Kari donated several of her organs-each one touching a life, each life touching the people around them, and those around them until, until what? I don’t know, but if you want to know what love to the infinity squared looks like, think of Kari. That’s a legacy any of us would be proud to leave behind.
Wednesday, April 09, 2008
Starting the new job....someday soon?
Last Friday I did attent an education day for the transplant department and I got all excited about starting the new job. So excited that I went shopping. Because in this job, I get to wear CLOTHES! (As opposed to scrubs, you know what I mean). With summer coming up, new shoes may be in my future, also. No, seriously, Love Monkey, I got rid of TONS of shoes last year and I have hardly any in my closet. I desperately need some summer sandals.
In tranplant news, this blog is allegedly about transplantation, my friend PJ has a coupla posts on recent organ donation cases. I'll leave it to him to fill you in this week on actual blog content, while I go back to thinking about shoes.
Oh, yeah, I had another blog I wanted to link to: my friend Ramona at Suture for a Living had a post on the first full face transplant in France recently. Last year at the AOPO conference I went to a lecture on face transplant. Full of graphic color photos, I'm just glad it wasn't a "lunch and learn." I used to think that I would draw the line on donating my face, but when you see what type of deformities these people have, well, I'd want to be able to give them a somewhat normal life if I could. Face transplants would be for people who have severe burns or deformites or trauma to the face, things like missing lips and noses. I think I remember hearing about one woman who hadn't seen her own grandchildren in years because they were so afraid of her. Interesting topic, they're looking for the right opportunity to do it here, but as you can imagine, people aren't exactly lining up to donate their face. It's hard enough to get people to donate the non-visible parts of them.
Anyways, I'll let you know when I start the new job.
Thursday, March 27, 2008
I finally finished charting around 8p, called him to pick me up and went down to the lobby to wait. I started reading a paper that someone had left. Halfway through, I got up and went to wait outside. He called back and said he was just leaving the house. I sighed and went back inside and picked up another section of the paper. I read the comics, my horoscope("stay in bed today") and a couple other things before I got to the obituaries. I always read the obituaries, because, well, you never know. And I saw that a little precious baby I had taken care of a few times had died yesterday.
I knew from the first time I took care of her that she was going to die. At six months old, she was diagnosed with a disease that would rapidly waste away her muscles until eventually she would stop breathing. I think it was on that admission that her parents decided that when the time came, they wouldn't intubate her but would just put her on comfort care and let her go.
Now, I would think of her time and again, knowing that eventually by the end of her first year on earth she'd be gone. But I like read the newspaper, I don't know, maybe once a month. Today I just happened to be late, then my husband happened to be later and somebody happened to leave a paper lying around for me to pick up. I'm sure I would have heard the news eventually, but I'm glad that I got to read about it right away and while I'm sad for her and her parents, I'm glad that her suffering is over. No more chest PT, little girl, no more coughalator.
What a baby, she was, too. A tiny little thing with a smile that could light up the room. I don't know why children are born into this world just to die, but it's a blessing to take care of them, every one.
Monday, March 24, 2008
Oh, the Peep-manity!
Evidence of The Pooter's exceptional intelligence

I expecter to find her stuffing her mouth full of Peeps and thought, "What the hell, Easter only comes once a year." We like to practice a laid-back style of parenting here at Chez TC. Instead, she had them arranged on the rug like action figures and was playing with them. I knew she was a super genius. Even the l'il Pooter knows that Peeps aren't a REAL food.

Saturday, March 22, 2008
The Kids are All Right

Well, all right, enough suspense. The news is:I'm back in the transplant game. I was waiting to break the news to my boss and officially decide before I said anything to anyone. I'm taking a job as a kidney/pancreas transplant coordinator starting next month.
It was a toss up. The new job is Monday thru Friday, flexible hours as long as I show up for clinic and meetings. Call is from home-I only have to take calls, I don't have to go anywhere in the middle of the night. No weekends or holidays.
The flip side is that I'm giving up bedside nursing, which I do like and I'm giving up taking care of the little ones, which I love. I'm also giving up doctors who role their eyes at the nurses suggestions, giving up working every other weekend and giving up getting a talking to when I'm 5 minutes late. No more 12 hours shifts. I can come home and do something more than gobble down dinner and go to bed with the baby. Pay's the same, benefits are comparable, one more week of vacation. The group of TC's in the office all seem pretty cool and they seem to get along with one another and the boss. I'll be doing post transplant, following up with the patients after they're transplanted, going over their meds and educating them on everything they need to know about their transplant. I'll be in clinic twice a week. It's new-very different from the organ recovery biz. I think I'm going to like it. Wish me luck.
Wednesday, March 19, 2008
But first, a word from our sponsors!

Let's see, what else. Like so many people I know, I'm going back to school. Over at the Nursing Online Education Database is a new article, 101 Little Known Nursing Scholarships for Nurses.
What else? I haven't kept up with Grand Rounds or Change of Shift in ages, sorry. That could all change soon cause there is BIG. NEWS. COMING. Ohhh. I can't wait. What could it be. I'm not pregnant, I didn't win the lottery and I didn't run into Brad Pitt. Nor am I having Brad Pitt's baby after winning the lottery, but I can dream, can't I?
Tuesday, March 18, 2008
Watch This Space...
Sunday, February 24, 2008
1632
You're going where? For how long?
WTF, Momma, WTF?
Steve, workin' the media
We did it!
I'm leaving, on a jet plane
On the flip side, I got to see Pooter (she was sleeping when I left) and we had lunch and took a nap together, so that was nice. Got up around 5ish, checked the airport website and decided it was safe to venture out again. It turns out I had to take the train to the train to the airtrain to a security checkpoint to a shuttle bus to the plane. Sheesh. Then I had a snack.
As for airport security, everytime I go through, I wonder why people put up with this. I saw some guy, who looked like my dad, get frisked-and I mean frisky, lets-see-what-you’re-hiding-under-your-testicles frisked, right in front of me. Because he forgot to remove his belt. Fortunately for me, I left my TSA-Totally Sucks Ass shirt at home or else they’d be tasering me still.
Anyway, now that I got the conservatives all riled up and sending me emails, I totally missed pizza and beer due to the delay. Ah, well. The delay also gave my flying phobia several more hours to marinate. Seriously, I’m totally scared to fly. I’ve tried Xanax, alcohol, meditation, prayer and hypnosis. The hypnosis worked. Now, I’m only mildly terrified. Actually, it’s really only the takeoff that gets me. It’s so, unnatural, getting all that weight off the ground. Once we’re at cruising altitude I’m ok and I figure I’ll take my chances on the landing. I take my seat, say a prayer, do a little guided imagery and tell myself that it’s ok, I’ve live a good life. I’ve learned a little, loved a lot and laughed often. Then, prepared to go into the great beyond, I buckle in. The great thing about Jetblue is that the TV stays on during takeoff. I got to watch Chris Rock make fun of white people. I figured if I died, at least I’d die laughing.
Arrived at O’Hare a little before 11pm. Steve not only picked my up but let me sleep on his couch. Muchas Gracias to him and Laura for their hospitality and the comfiest couch ever.
Friday, February 22, 2008
I'm off!
I can't thank all those who donated enough. I didn't think anyone would give money, truthfully, certainly not my "imaginary" internet friends. Certainly not my wonderful niece and nephew-in-law all the way in Korea. Thank you, thank you, thank you. Check back next week for pics of the grand event.
Today I gotta get it all together in order to be at JFK on time. I think the train to JFK is actually longer than the flight itself. I could have left from Newark, but it would have meant a layover in, I think, Kuala Lumpur. I can't spend that much time in an airport, I get hives. Also, I have to make sure my travel bag is devoid of such stuff as nail clippers and unmarked containers, lest I get tasered by the TSA. (Sorry, I really love the TSA. Please don't put me on the no-fly list.)
Anyhoo, after all that train to the plane to the train to my destination, there's a promise of deep dish pizza and beer. I can't wait.
Oh, yeah...Change of Shift is up!!! Now with video!!
Tuesday, February 19, 2008
a whole week off

Well, not exactly, but I will be doing this:

and this:
And BTW, I can't thank all of you enough for donating to my Hustle up the Hancock. You know who you are and this week I'll even have time to thank you all individually.
Tonight was my last day at work for 7 days, oh glory be! I'm not sure when I last had 7 whole days off in a row. Also, I broke my streak in which my last day before a break means some disaster happens. Like a bunch of hemophiliacs in a glass bus crashes into a nun convention. Or something. Anyway, quiet day at work. Took care of one awefully cute lil baby and even got to rock her and feed her and possibly sing to her, real low so no one would hear. Possibly the 2nd cutest baby on the planet, but much smaller than the Pooter. Like, 75% smaller. Cute little nugget.
Anyway, I'll be spending the next few days cleaning and spending quality time with the family before I jets off to sunny Chicago. (It's sunny this time of year? Right, Steve?) And I promise to have lots of pictures to post and maybe some actual writing content when I get back. Wish me and my quadricepts luck. We're going to need it.
Thursday, February 07, 2008
Thursday Reading
Tuesday, if you missed it, Grand Rounds was done by Amy at Diabetes Mine. As I know from experience, hosting Grand Rounds is no picnic. Great job, Amy.
If you want to read something shorter, I was inspired to write this by David Bale at Very Short Novels. Hope you like it.
Our Boy
Your room was starting to have a well-lived in look; Pictures on the wall, stuffed animals, snacks, balloons. There was a huge, shaggy blanket that your mom brought in for you but usually she wrapped it around herself, just for the comfort in it. Then, the week before Super Bowl Sunday, your favorite nurse had brought in Giant’s pennants to put up around your room, because she knew it was your favorite team. Whether you even knew if what Super Bowl, or January for that matter, was besides the point. That was the same Sunday they brought the priest in to have you confirmed.
I didn’t really know you at all, sometimes when I saw your dad in the elevator, I’d ask him, “How’s our boy doing?” and he’d give me an encouraging nod. Meanwhile, your body just became smaller and thinner, until you were just a bump under the blankets. Your parents had been hopefully waiting for you to recover. Then they made you a DNR and a different kind of waiting was started.
I came back after three days off and the significance of the empty room didn’t hit me immediately, but in the lounge I saw a bag full of blue and red Giant’s gear with a piece of tape, “for Nurse Dawn.” That’s when I knew. The room had been swept bare and there wasn’t a sign left of the Giant’s or anything else that was yours. Even your specialty air mattress bed was gone.
A few hours later, the room had a new occupant, an annoyed looking teenager getting a respiratory treatment. She had no idea that you had ever been there.
Tuesday, February 05, 2008
Let the fun-draising begin!!
Also, my friend Tennessee Don from Underdog put up a post about my efforts, so the pressure's on. I must climb that tower or let down every democrat in the 9th district! Thanks, Don!
Monday, February 04, 2008
I'll be Climbin' for Kari!

Somehow, someway, some time ago, I decided that I was going to Chicago this February to
- Meet my friend Steve
- Climb the Hancock Tower
Did I mention I'm going there in February. Because I've been to Chicago when it's been sunny and warm, but February? Who goes there deep inna heart of Winter. Me, of course.
Also, so as not to confuse y'all, like I confused my mom, I'll be climbing the stairs(as opposed to climbing the outside with ropes and carrabiners and such, which is waaay beyond my super powers). All 96ish stories of stairs. How bad can that be. After all, Katie Holmes ran the damn NY Marathon and was later seen sporting heels. I'm a hell of a lot tougher than Katie Holmes, I'll tell you right now. I could totally take her in a fight.
Anyhoo, I'll be in the, umm, what do they call Chicago, anyway? The Big Breezy? The Big Cheesey? Well, I'll be there February 23-25, for climbin' and all kinds of socialness, that I have to go half-way across the country to get, because my friends in NJ(The Big Stinky) can't even CALL ME! (and you know who you are, too).
But enough about me. Why am I doing it? Because of Steve, of course, the one man hurricane who started Kari's Climbers in honor of his lung donor Kari. Steve has a beautiful page all about how he came to know and meet Kari's family and friends, many of whom climb with him every year. Read all about it here and bring the tissues. Steve also writes for Revive Hope, an awesome blog with inspirational stories about how organ donation touches people's lives. If you haven't already, check it out, if only for the adorable picture of wittle Stevie.
Did I mention that this is a fundraiser? Give, give, give people. Give til it hurts. See how many seconds you can hold your breath and than give that many dollars! Than thank the deity of your choice that you have healthy, pink, shiny lungs that breath on their own without any help from oxygen and machines and such. For your added convenience, GIVE HERE. Look at my lonely, little thermometer: it's at zero. Please help it out, won't you?
Meanwhile, in anticipation of the climb, I'll be putting a StairMaster in a walk-in freezer for training purposes.
If you're in the Chi-town area and want to see TC in the huffing, wheezing flesh, email me. If you're strong enough, maybe you can carry me to the airport Monday when my legs no longer work.
Wednesday, January 30, 2008
Chimera? What's a Chimera?

The Chimera is a mythical creature, as described by Homer in the Iliad, as "a thing of immortal make, not human, lion-fronted and snake behind, a goat in the middle, and snorting out the breath of the terrible flame of bright fire".
Chimerism in scientific terms is when an animal has two or more different populations of genetically distinct cells that originated in different zygotes; if the different cells emerged from the same zygote, it is called a mosaicism. (From Wikipedia, see here for the whole article). A male tortoiseshell cat is a chimera.
Microchimerism is the presence of a small number of cells, genetically distinct from those of the host individual(also from Wiki). In some cases, fetal cells can find there way into the mother's circulation and remain there for as long as decades. This has also been found in some severely immunocompromised trauma patients who have received blood transfusions.
Even more startling is the case of a woman who was found to have two sets of genetically distinct cells. It was discovered when she and her family went for tissue typing because she needed a kidney transplant. From the New Scientist, November, 2003, this is a really interesting story on it, and explains it very well. As researchers have looked into it, genetic material can be transferred from mother to children and vice versa, or between twins in the womb. There is even speculation that a mother can receive cells from her fetus, carry them in her circulation for years and pass them on to future children that she carries, all without anyone having a reaction to what should be seen as a foreign invader by the body. Could they be blast cells? Like a stem cell transfusion? Even more perplexing is why this should happen.
I'd be lying if I said I really understood this. Chimerism first came to my attention this past fall when I was doing research on transplantation. I had never heard of it while working as a TC, but immediately it was clear to me why transplant researchers would be so intrigued by this. One of the biggest, (the biggest?) problem with transplant is rejection. The recipient's immune system sees the new tissue as an invader and tries to destroy it. Not only is it a problem with the life of the organ and the life expectancy of the patient, but also the the cost of the antirejection drugs, which can be $50,000 a year, are a big factor in people's financial ability to pay for a transplant. Imagine not having to take antirejection drugs. Imagine being able to extend the viability of a tranplanted organ. Some centers, like Northwestern Memorial in Chicago, among others, have been transplanting stem cells from living kidney donors into the recipients. The logistics of both stem cell and organ transplantation make this currently unfeasible for cadaveric organ donation.
Just when things can't get any weirder, comes this story from Down Undah. 15 year old Demi-Lee Brennan received a liver transplant. Nine months later, her doctors discovered that her blood type had changed to that of her donor's. More importantly, they found that stem cells from the donor liver had penetrated her bone marrow, changing her immune system and allowing her to come off anti rejection drugs. While transplant surgeons have known about stem cells "floating about" in the recipient's body, this is the first time anyone has, in effect, received a stem cell transplant and changed their immune system. If they can find a way to replicate this, it could change the field of organ donation.
Imagine taking on your donor's DNA. Makes that new Jessica Alba movie seem downright tame.
Monday, January 21, 2008
Winter of My Discontent**

Can you believe we're halfway through January? December, according to my horoscope, was supposed to be a banner month for me:Jupiter was in Sagitarrius or Venus was trining with Mercury or some such. Mostly, though, it felt like my head was in Myanus. Work continues on. RSV season started early and the hallways are cluttered with yellow isolation carts. Let me tell you, there's nothing like spending 12 hours in a blue hefty bag to make a girl smell, well, less than fresh.
It seems everytime I turn around, there's a new job opening for a transplant coordinator. Not on the procurement side, even I'm not that masochistic, but on the recipient side. The hours are usually good, 9-5 Monday to Friday. Call consists of making phone calls from home. Not too shabby, but I like the PICU. I like the work, I like my bosses and coworkers and I like 99% of the doctors. If one of these jobs had been available when I left the OPO, I would have gone for it. So, do I stay with the what's close and comfortable or do I search for greener pastures?
As for that 1%. There is one doctor who I have a problem with. Initially, I liked her. She's very bubbly and friendly and confident. Then, during rounds, I started hearing her tell the residents things that were just wrong. Like dopamine doesn't make your heart rate go up. That Levo only effects beta, not alpha receptors(or was it alpha and not beta? Either way-it effects both). That a person can't have an O2 saturation of 90% and a PO2 in the 50's. Recently, my patient was an organ donor. She mentioned to the resident that the family can bring up a religious objection to brain death at any time (my state says that people can reject a diagnosis of brain death based on a religious objection, in which case the person would stay on the vent until they cardiac arrest). I respectfully told her that the law says that the objection must be brought up by the family at the beginning of the process. She countered and gave an example of some family somewhere who sued the hospital. I said that anyone can sue at anytime, but it doesn't mean they're going to win. She did not like that I challenged her wisdom, in front of a resident no less. Ever since she's been quick to find fault with me, usually during rounds when she has an audience. Then I spoke with another attending, I found out that many people have been having a problem with her, attendings, residents and nurses alike. I'm trying to just stay on my toes, cover by butt and otherwise keep my big mouth shut-not easy for me.
So I've christened her Doctor Betty. Just like Renee Zellweger, whose Nurse Betty gets bonked on the head and thinks she's a nurse, so I believe that this woman was bonked on the head while watching Grey's Anatomy and now she thinks she's an intensivist. Don't mess with me, sweetheart, I've got a blog and I'm not afraid to use it.
So, a couple other things happened with Dr. Betty during the organ donor. First, we were waiting for rounds, the TC and I, because we had some management concerns. The team passes by to the next room. I ask them if they're going to round on our donor and she says, in the hallway, VERY LOUDLY, "we don't round on dead people." Now, next door is another young girl with a brain injury and her mother is very, very aware of the organ donation going on next door. She's standing in the hallway when the Dr. Betty says this.
Secondly, she says, again to the resident, that the bronchoscopy we need can't be done until the patient is pronounced because it's unethical. In truth it's because the OR only has 2 bronch carts and they're both in use until later in the day. But now my hackles up, because this chick wouldn't know ethical if it bit her in her not-so-small posterior. (See-my hackles are raised just thinking about it.)
So that got me thinking about the whole donor process and what's ethical. There are a couple of ways to break down the process-before death and after death, before consent and after consent. Here's the referral process in a nutshell: hospital staff identify potential organ donors based on neurologic criteria. These neurologic triggers were proposed by the HRSA collaborative based on what worked at hospitals with high consent rates. Patients with a Glasgow Coma Score of 5 or less and or loss of 2 or more cranial nerve reflexes meet the triggers to be referred to the hospital's OPO. The family is not told of this referral. Why? Because at this point, a bunch of things can happen. Very often, the call is made and the person is ruled out over the phone; they're too old, they have cancer, AIDS, multisystem organ failure, etc. For some reason, these referrals always seem to come in at 3am. You can almost hear the nurses, "Hey, has anyone called this guy in yet?" "No, we'll let the night nurse call it in when she has a chance."
Or, the person is not brain dead and may not be close to being brain dead. They may still be sedated and/or paralyzed. Then, why are we called so early? Because it is hard to know how slow or fast a brain injured patient will deteriorate. They may never become brain dead. They may be brain dead tomorrow. We've followed patients for weeks only to finally tell the hospital to re-refer them if they get worse. Sometimes they get better, sometimes they stay in that suspended state of not dead but not waking up either. That's a post for another day.
Should families in the above situations be told that the patient is being referred for an organ donor evaluation? Like so many of the controversies surrounding donation, it's complicated because of people's emotions. If a patient possibly needed to be trached, an ENT would be consulted. The family would be told. Maybe the patient would wind up with a trach, maybe not. Maybe the family wouldn't consent or maybe they'd want more time to see if the patient improved.
The same thing when a referral is made for a potential organ donor, when the OPO is consulted about whether the patient could be an organ donor. More than likely, they won't fit the criteria. Only 1% of all deaths are medically suitable to be organ donors. From my experience, if you tell the family at this stage, one of two things will happen:they will really want the person to be a donor and their hopes will be crushed if they're ruled out or they will get upset that anyone is talking about organ donation from their still-alive loved one. All right, add a third reaction-they don't get upset, but they say no, and then they OPO will look like they're hounding the family if they keep asking the family.
But does that make it right, not to tell? Families should be kept informed of what's going on regardless of what their perceived reaction will be. It boils down to having a different approach because organs are a limited resource. I'm sure ethicists have a word for this. In order to be an organ donor, even if you meet the requirements, a lot of variables have to be taken into consideration to get the best possible outcome in a short time period. If organs were plentiful, we could just do whatever and not worry about the family's reaction, because another donor will come along. If we had all the time in the world to let families think about it and not ask them to make a tough decision at the most stressful time, it would be easier to get consent. But we don't. Even if every medically suitable, brain dead patient's family consented, there still wouldn't be enough organs for everyone on the list. And the timing is short-families must make this decision while they are still realing from the death of a loved one.
Am I making sense? It's hard to make a cohesive argument when I have to start and stop every paragraph, being pressed into mommy duty. Anyway.
It's similiar to when I would introduce myself to families. I say, "Hi, I'm a nurse who works with the families of brain injured patients. I'm here to help you with some end of life decisions." Or words to that effect. Not a lie, but concealing the truth. In order to spend time with the family, see what their needs are and how best to approach them. This is generally how the TC's in my OPO do it-other OPO's may vary. Friends of mine have quit over stuff like this-they feel it's too misleading. I still go back and forth with it, but in order to be a successful TC, I did have to make my peace with it early on. I wonder if it would just be better to be introduced at the family meeting and say right from the onset who we are. This way, we're trying to develop a rapport with the family. One one hand, this is good:the family gets some usually well needed emotional support and someone who can act as a laison between them and the hospital. Some hospitals already have a person like this in place(social worker, patient rep, etc), some don't.
The problem with the rapport approach, that I have, is that at times it feels like you're a used car salesman. Here, let me get you information, keep you updated on the patient's progress, get you tissues, etc. All so that when it comes down the request, you'll say yes because, doggonit, you like me. I suppose that could be considered condescending to the families I've talked to. I'd like to think that each and every one make the right decision for them. Again, it's an emotional time and how something is presented can have a big impact on what decision they're going to make. I guess, though, when it gets right down to it, I don't ever remember feeling like I twisted someone's arm to donate. And the people who aren't there, with the families, can say how it's such an important cause and we're just trying to do the right thing and be advocates for the people on the waiting list. But when you're right there in that room with the family who's grieving and looking to you for guidance, it can feel like a mighty fine line.
**Now is the winter of our discontent
Friday, January 18, 2008
New Music-yes! New Posts? Workin' on it

Thursday, December 27, 2007
Guess what I got for Christmas??
When I left the OPO, sadly I also had to leave my laptop. 14" IBM Thinkpad, mostly indestructible. It was basic black, addressed all my needs, wasn't too heavy. It didn't have a disc drive, cause they didn't want us installing programs, I'm sure, but other than that, I loved it and vowed to never have a desktop again.
Husband told me he was going to me a gift that would change my life. Several things came to mind-a trip to India to spend a week with the Dalai Lama? Hmmm, too expensive and he's probably busy. A winning lottery ticket? A chance to meet Johnnie Depp? (that wouldn't change my life, but it would totally rock!) No, none of those.
He got me my own laptop. This is me, typing away on my brandy new acer, with CD/DVD burner and a webcam. Maybe I could do podcasts!? After I lose 20 pounds and get a makeover, of course.
This past week at work was a doozy. I worked Sat, Sun and Mon with the same sick, intubated kid. Nobody was really sure what was wrong with him, but originally they thought he had croup. Last week, I took care of him and he was doing something really weird-for a couple of hours his CVP would be high-19 to 22 and his urine output would drop. Then, without any intervention, his CVP would return to normal and his UO would increase. I told the intensivist on that day and then never heard anything else about it. I was wondering if he had a coarctation of the aorta, but his pressure was low, not high, and I really thought someone would have picked up on it(he's an older child). Turns out, he has a collateral artery wrapped around his aorta and it's not respiratory at all. Always go with your gut.
So New Year's Eve I was asleep by 10pm. Then the next 2 days I was off and basically did NOT ONE THING. So much for time management, but it's been a long time since I've taken a nap without a kid attached and I'm not apologizing for it.
On the organ front, I've been reading about this girl, Nataline Sarkisyan, who was denied a liver transplant by CIGNA. I was pretty appalled but hadn't written about it because I didn't really have time to delve into it. And if there's one thing we pride ourselves (myself) on here at donorcycle, it's avoiding easy answers and half-truths. So today in my emailbox was a surprisingly in depth article on the case from Maggie Mahar at Health Beat. I did think at the time that it was surprising that doctors would transplant an organ into a person with cancer. Except in certain cases, cancer patients don't usually get transplanted because the immunosuppression drugs already put a person at risk for cancer and there's a high risk of coming out of remission with the same or another cancer. But I thought, well, maybe Nataline was cured by the bone marrow transplant from her brother. Now, reading the article, it says that her doctors gave her 6 months to live WITH the transplant.
Of course, if it was our own child we'd take those odds, but here's the thing-there aren't enough livers to go around. So who should get it? The 17 year old who will probably die anyway, or someone else who will live another 5,10, 20 years? It's a hard choice and I'm trying to come up with an analogy but I can't think of anything that involves such a restricted resource with such emotional appeal. Then, too, the hospital asked the family for $75,000 if insurance wasn't going to pay. I guess some have argued that the hospital could have eaten the cost. I'm not sure if that figure was for the surgery and hospitalization. I do know, that for self paying recipients, the hospital wants to see if they have the resources to pay for the first year of anti-rejection meds, which runs around $50-60,000. Again, this sounds really harsh, but the meds are needed or else the organ will be useless. It's the same reason why people are counseled to see if they are up to all the follow up treatment that comes with receiving an organ. Again, I'm not really sure why that gave that dollar amount to the family, who couldn't come up with the money of course, and the doctors are no longer talking.
I don't know where the answer lies. I'm reasonably sure that if the docs at UCLA felt the transplant was worth it, then CIGNA should have covered it. On the flip side, Maher points out that CIGNA approves 90% of all tranplants. And I do agree with her on this point, by reconsidering their position when it was essentially too late, CIGNA now looks like a horse's ass(My words, not hers).
The one thing I am sure of is that this sort of thing happens because organs are scarce. If you could get one just as easily as you could go the pharmacy for a presciption, no one would have to make these choices. I do hope, if nothing else comes out of this, that all those who fought for Nataline will sign their organ donor cards.