Saturday, July 14, 2007

Got Hope?

Carnival of Hope is up at Rickety Contrivances of Doing Good. Deadline for next month is August 9th, hopefully I'll make it in time to submit something. I keep meaning to and I keep forgetting. Check it out, Susan's blog is one of my favorites.

This week we had a case where nothing was recovered. The patient had various infectious diseases, but his family really wanted to donate. We went to the OR thinking we were going to recover liver and kidneys. Then, literally as we were pulling in the door, I got word that no one wanted the kidneys. God, there are so many people waiting for kidneys, I couldn't believe it. Plus, kidneys can be put on pumps for a few days to improve their function AND they can get shipped just about anywhere. Once, I had a box o' kidney go to Hawaii. I offered to take it there personally, but my boss didn't go for it.

So, the liver team proceeded with the case but, unfortunately, the liver turned out to be severely cirrhotic. Case aborted. I was with another coordinator, the one who had gotten consent, so she told the family. I can only imagine it must be heart breaking, when organ donation is the only silver lining in a horrible situation and then it doesn't happen.

It happens. I always tell families that it's a possibility. You open the donor up and find a large tumor or a necrotic bowel. I've had a couple experiences, both with little babies, where they had a rare blood type and there was no one their size on the list. In those cases, the lists are usually small to begin with and I went through them quickly. I think it's especially heart breaking when something goes wrong with pediatric donors. Losing a child is the loss of hope, and organ donation can be the only hope they have left-that a part of their child will live on. It's so hard to have to tell these families that the donation can't happen.

Sometimes, you find out a patient is HIV+. Legally, as part of the consent, we tell the patient's doctor, the funeral home and the legal next of kin. Imagine calling an elderly widow and telling her that the donation didn't happen because her husband was HIV+. Or a husband that his dead wife had hepatitis B or C. At that point we've already done the medical/social history with them, so we know if they didn't know about it. Again, it's a possibility I try to prepare people for, but at that point, most people are just going, "yeah, yeah, ok" They have a lot more on their minds at that point than theoretical possibilities.

With DCD, there's always a chance that the patient won't expire in the 60 minute window. This is something we discuss with the hospital staff beforehand. The patient would then go to a predetermined spot-back to the ICU or a medical floor. There, end of life care will continue as before until the patient dies. I always think with DCD that you are really asking the family to take a journey of faith with you. The act of dying is so personal and private, but these families are so commited to organ donation that they're willing to open that moment up to you, so that someone else can live.

Saying yes to donation is an act of faith. It's a seed of hope for a tree you might not ever see bloom. Sometimes even I question why we're putting so much effort into a marginal donor, or a "liver only". Except that it isn't just about the liver or the kidneys, it's about John, the 48 year old who's been on dialysis for 4 years or Amy, the 17 year old who won't live to graduate high school without a new liver. I'm constantly amazed by the families who could understandably think only of their own grief, but instead think of the good that can be done for others.

Don't forget Wednesday the 18th is Blogging for Donation day! Hmmm, what to write about?


tcgirl said...

hmm...the part that stands out about this is that the family made the ultimate sacrifice in letting their loved one die with strangers, just to donate and do something to help someone else. All the preparation in the world given to the family is hard to explain in a case like this...

Susan Palwick said...

Thanks for the link and the compliment, TC! And this post would be a fine one for CoH . . . .