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Posts Tagged ‘1. Living organ donor resources’

Long before I became a living donor for my brother (years before we even knew he had a disease arising within him), I began what has become a longtime struggle with chronic depression.  Thanks to amazing family and friends, a very talented and caring therapist, and the well-timed, cautious application of pharmaceuticals, I have managed not only to survive it, but to embrace it as a part of me and to cope with it when it rears its ugly head.

I tell you this because, well, for one thing, it’s such a huge part of me, but also because I continue to learn from it, and I am perhaps just now beginning to appreciate how much what I learn can be applied to my experience as a living donor. 

A case in point:  One of the most important books I read during my struggle with depression was a short, quiet volume called “The Zen Path Through Depression,” by Philip Martin.  I remember being overcome at the time by how Martin’s beautiful, simple descriptions of how depression feels pulsed through the darkness, surrounded me like a blanket, and pulled me to a lighter place.  I remember my sense of disbelief that the author could possibly have articulated my own feelings so well, just by articulating his own feelings. Discovering that someone else understood how I felt was in itself a source of faith and hope.  It was such a comfort.

Recently, I returned to that book to remind myself of some of its teachings.  In a chapter about how hard it can be to find the words to express what you are feeling, and find help through personal connections, Martin writes:

Even for those [friends and family we talk to] who do want to hear, who listen and try to be truly present for us, it is as if we are sending dispatches from a far-off country.  We tell them about the sights and sounds of a land they have not seen, and our words limit us in what we can communicate to them.  Our fears are difficult to put into words.  …

It can be immensely healing to speak to another person who knows or has experienced what we are going through.  We can learn that we are not alone, and that others have been through depression and survived… When we are with these people, we don’t need to expend a lot of energy trying to explain what we are going through.  It is a huge relief to at last be understood. 

It is possible to find someone — or perhaps several people — for whom just a few words tell everything we need them to know.  We can then feel heard, and acknolwedged, and understood.  Often with such a person we don’t even have to speak at all….”

 I love this passage, and I testify that it was true for me both in depression and in becoming a living donor.  It is why I worked so hard to seek out and talk to other living donors during my journey.  It is why I work so hard now to try to connect living donors with each other.

If you would feel comforted or helped by talking to another living donor, either another prospective one, one who has been there and had great results, or one who has been there and did not have the ideal outcome we all hope for, then email me with a request, because I have a roster of donors who are willing to be that knowledgeable, empathetic ear.  Check out the Transplant Cafe and Transplant Alliance sites.  Ask your transplant center team if they can connect you with other living donors from their center.

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Recently, a new online community hit the scene:  Transplant Alliance.  Members can join each other for live chat or post on discussion boards, can create pages, form groups and identify friends, and more.  So far there are 52 members — the site is still new.  You can find my page there under the name “ChoppedLiver,” and I’ve also created a living donor group as a place to focus conversation on the issues unique to our experience.  I’m adding a perma-link to Transplant Alliance to the General Resources set of links in the right hand column.

This new site is similar in mission and purpose to the Transplant Cafe, an older and larger community of 750-plus members (with a massive amount of content) that I have blogged about before.  Join one, join both!  That site also has a page for yours truly under “Chopped Liver,” and a Living Donors Group that’s now 16 living donor members strong.

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Can you imagine trying to go through the emotional and confusing experience of living donation for a loved one if all the information was provided to you only in Russian, Chinese, or Arabic? If you’re like me — a native English speaker from the American Midwest, perhaps not. But for many of the 44 million U.S. residents who are Hispanic, and several more who visit this country from Mexico or elsewhere just to donate an organ, that’s very much what it’s like.  There is not an abundance of information or resources available in languages other than English, simply put.

I’ve been reminded of this gap through my recent correspondence with a passionate young man in Puerto Rico who is considering donating his liver for his father. He’s bilingual so is able to take advantage of English resources, but he’s dismayed by how little is available for his fellow Puerto Ricans and any others in the U.S. who are Spanish speaking.

According to UNOS, to date in 2008 Hispanics have received more than 13% of the living donor transplants performed in the U.S., and about 14% of the deceased donor transplants. That’s similar to their representation in the general population — according to the 2000 U.S. census, Hispanics and Latinos made up 14.8% of the U.S. demographic, or about 44.3 million people. At some transplant centers, Hispanics and Latinos make up the vast majority of donors and recipients. (At Jackson Memorial Hospital in Miami, as an example, I learned that more than two thirds of the living donors they see are Hispanics who speak no English and often are temporarily visiting America from Mexico solely for the purpose of donating.)

To help my new friend in Puerto Rico, I went on a hunt for good online sites that offer basic living donor information in Spanish. Here they are, with apologies for my rusty Spanish!: (Aquí estan unos sitios que tienen información bueno sobre donantes vivientes.)

Y, finalmente (and finally), el texto siguiente describe la opción de donante viviente.  Yo lo encontré en el sitio del New York Center for Liver Transplantation:

Este tipo de transplante es una opción solamente si un donante debidamente calificado se ofrecería. Éste debe ser una persona saludable, no necesariamente un familiar del paciente, y quien tenga un tipo de sangre compatible. El donante debe estar en buen estado físico y ser menor de 55 años de edad. La evaluación del donante es separada de “su” evaluación para el transplante de hígado. En un transplante de este tipo, una porción del hígado del donante es extraída e implantada en el receptor. La porción restante del hígado del donante se regenera, como también se regenera la porción que se implanta en el receptor. Usted puede tratar esta opción en más detalles con sus médicos especializados durante sus visitas.

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I have Minnesota Public Radio and my linked-in mother both to thank for alerting me today to the passionate actions of Robert Redford’s son, James Redford, in promoting transplant awareness.  Seems his story is everywhere lately — he’s a liver transplant recipient, non-profit founder, and, like his father, a filmmaker, and one of the many things he’s done in support of the cause was a film called “Flow,” “a touching depiction of an encounter between a donor family member and a recipient.”  So cool.

[Side note: if you thought blogging about Pope Benedict attracted traffic to my humble little blog, just imagine what the name “Robert Redford” could do to get people here! (Robert Redford! Robert Redford!)]

At Jamie’s Web site for the James Redford Institute for Transplant Awareness, one of the features I noted with interest is a section called “Connect with Others.”  He offers links to three resources chat group resources, which I’ll check out and, if they seem to be active and relevant, I’ll add to my links at left.  Meanwhile I’ll try writing to Jamie to see if he can add the Greatest Gift Foundation‘s living donor registry project to his list, as well as Nelson Freytes’ terrific Transplant Cafe site, which is growing larger and more active by the day.  

As you may already know, one of the major activites of the Greatest Gift Foundation will be to connect would-be and past donors one-on-one for networking and conversation.  We’re already actively doing this today. If it’s something we can help you with, of if you’re interested in joining our roster of donors who are willing to connect with others, let us know by dropping us an email

Meanwhile, I’m thrilled to see Jamie Redford contributing to the cause with his star power and talents.  That’s a sun I’m eager to dance in.

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