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An active blogger who is living in Jerusalem for a year recently posted about her experience celebrating the Jewish holiday of Purim. In her post, she describes her experience working with the Halachic Organ Donor Society, and in reading it I learned a little about the Jewish religion’s perspective on organ donation. Here’s an excerpt from her post:

I chose to participate in an educational project regarding halachic organ donation. The issues are as follows: Rabbis who object to organ donation do not do so because a body must be buried whole (though some people do use this as their objection). Rather, they object because organs are usually taken from a person who is brain-stem dead but whose heart is still beating with the help of a ventilator. These Rabbis consider a beating heart to be a sign of life and therefore donating organs at this point would be killing the donor. What I did for my day of chesed (kindness) was to spread some education on the issues as well as information on famous Rabbis who do agree with organ donation. A LOT of Orthodox and Haredi Jews follow the thoughts and ideals shared by their Rabbi so closely that they refuse to deviate from their Rabbi’s viewpoints. Therefore, if their Rabbi doesn’t agree with the idea of organ donation then they do not agree with organ donation. Luckily, the organization I worked with, the Halachic Organ Donation Society, has great information that lists every major Rebbe who supports the organization. Also, the organization created a donor card that allows donors to choose to donate their organs at brain-stem death or after cardiac death. So, a group of us stood on the busy intersection of Emek Refaim and Rachel Immeinu to hand out information and sign people up for organ donation cards (it helped that our friend, Josh, brought his cute new puppy. Puppies are always a great engagement tool).

I will be adding a link to the lists at right to the Halachic Organ Donor Society’s Web site.

An insider at the University of Pittsburgh Medical Center suggested two “right questions” to ask of a transplant center to better understand the risk of being a living donor:

  • How many of your living donors had complications required invasive procedures?
  • What is that number as a percentage of your total living donors for that same time period?

I like these questions — precise, unambiguous, and, if you need the help, good conversation starters overall about the risks and your transplant centers’ view of those risks.  It is worth taking the time to spell out: Different centers will have different answers, different approaches, different perspectives.

Score another achievement for kidney paired donation (or daisy chain transplants, or domino transplants, as they are sometimes called). Johns Hopkins in Baltimore joined Barnes-Jewish Hospital in St. Louis and Integris Baptist Medical Center in Oklahoma City for a 12-patient, six-transplant cross-country kidney chain.

An anonymous altruistic living donor began the chain, and a paitent on the UNOS waiting list for a kidney was the last link. According to the Johns Hopkins news release, all six donors and all six recipients are recovering.

In case I haven’t mentioned this in a while, I love my brotherJoe was recently back in the hospital with an infection for a brief stay, and took the time to mail me the day’s menu, as a nod to our memories of the marvelous food we had back when we were occupying nearby hospital rooms post transplant.  He highlighted one of the dinner choices: “290: Homemade Salisbury Steak.”  It’s homemade! How can you beat this?!?

Alarmingly, it is the only item on the entire menu that is, apparently, homemade.  The rest must be shipped in from a factory – an idea that scares me a little for items like “132: Garden Quiche” and “956: Cheese Omelet.” 

Ah, hospital food.

Transplant surgeons “tweeting” from the operating room during kidney surgery?  I LOVE technology!

(For those of you not hip to Millenial lingo, “tweeting” means posting brief updates to Twitter.)  Thanks, Meghan, for sending me the link!

We don’t like to be called “heroes.”  Let’s start there.  At a living liver donor support session hosted at Northwestern Memorial Hospital in Chicago a few weeks ago, that was the nearly unanimous opinion expressed by the 18 or so living donors in the room.  That opinion culled a strong reaction from one family member who was along for moral support, and from the living conor care coordinator Lori Clark and other support staff in the room.  “You all say you don’t want to be called heroes, but you are the very embodiment of the word,” said the family member, if not in those precise words then in something close to it.  “I’ve just never heard that before,” Lori said.  “It’s really helpful to know that!”

Here are some other nuggets that seemed to be consensus among the donors, if not unanimously shared:

  • We wish there were better support after the surgery.  We often feel abandoned by the system (a comment I noted was shared by both donors with easy recoveries and donors with more difficult recoveries alike).
  • Our gift has a major psychological impact on us.  For some, it manifests in chronic depression.  For others, in a long-lasting “high” and boost in self-esteem.  For some, there is a path that wanders between the two extremes.  But there is an impact, and it is profound.
  • We wish we knew our medical team better.  Having random doctors we’ve never met before pop in on us post-surgery is awkward.
  • Food is an issue.  We report post-surgical changes in metabolism, in taste for certain items, in appetite, even in allergies.  Causation may not be proven, but there seemed to be a lot of common stories in the group.
  • Ongoing pain and numbness is also an issue.  People reported not being able to sleep on their stomachs or sides, numbness of the scar, abdominal muscle pain after exercise — even those who were three years out. 
  • We need each other.  The experience is alienating and hard to discuss with people who don’t understand what we’ve been through.

There were some individual stories, not necessarily group consensus, that were fun to hear and share.  Tales of personality changes (“I suddenly like baseball”), of weird dreams, of memories from our nights in the ICU, of immediate post-recovery bloating and vomiting, of constipation, of our first big “walk” down the hall, of handsome doctors and annoying beeping machines. 

It was lovely.

A couple of weeks ago, the living donor care staff at Northwestern Memorial Hospital hosted a support group meeting for the living liver donors who have graced their lives over the past three years.  More than a dozen of us showed up, some with stories spanning more than three years, one who was still wearing her hospital ID bracelet from her donation surgery less than one week before, and one brave, brave soul who was due to become a living donor the following week.

At first, I admit, I attended more out of interest in how to provide this kind of support to other living donors.  I intended to take notes on the types of issues and needs that the donors brought to the conversation. On the format, what worked, what didn’t.  On the pace of conversation, the role of the transplant center staff, etc. 

But within minutes, I put my pen down and realized I should be present in that room as the living donor I am, as a participant and not a spectator, as someone who, for all the positive aspects of my donation story, still needs that precious and all-too-rare support from people who can understand what I’ve been through.  There were surprisingly few tears (although, a bit of me suspects we would see more if we got to know each other as a group over time) and a lot of laughter.  I left the meeting on a high, and on edge, unsettled and in need of more conversation.  It was like a hole had been shot out of the wall of a dam, and to this day, I don’t feel yet that it has been plugged.

There are two wonderful networking sites that are aiming to provide an online version of support groups, for the entire transplant community.  Transplant Alliance is one; Transplant Cafe is the other.  But I left Chicago that week with a sense that nothing can beat in-person gatherings like this one.  To all of you who were there, I hope our conversations continue.  And Mara, I owe you a phone call! Promise to make it as soon as I’m home from Paris!)

Tomorrow’s blog post: A list of some of the common experiences as opinions we landed on quickly as a group.

Wednesday’s post: A recommendation for centers who are considering launching support groups.