In addition to this October 27 newspaper column being a fun read about a married couple who now share the bond of a successful living donor kidney transplant, it contained a fact that struck me as very interesting:
Spouses make up about 15 percent of living donors for kidney transplants at Legacy Good Samaritan, according to the hospital’s donor coordinator. And it’s more often the wife giving to the husband.
I wondered how that statistic holds true nationally, and how the rest of the living donor group breaks out by relationship to the recipient — parents, siblings, offspring, aunts and uncles and cousins, friends, and unrelated strangers. And, whaddaya know?!?! UNOS offers that statistic.
In 2008, of the 3,629 living donor transplants reported to date, the largest group of donors were biologically related siblings — 839 of them. Parents made up about 9 percent, and biological children made up about 16 percent. Spouses were just over 10 percent.
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There is promising news from OPTN/UNOS about the success of kidney transplantations from living donors who are over the age of 55. A study of more than 20,000 kidney transplants has revealed that the survival rates of recipients who received living donor kidneys hardly varies at all when you compare whether the living donor was older than 55 or younger. Meanwhile, the survival rates for the living donor recipients was significantly better than the rate for people who received kidneys from deceased donors — regardless of whether the living donors were over or under 55.
There’s a lot of statistics in the report to plow through, but the bottom line is, transplant centers may be more receptive, based on this data, to the idea of accepting living donors from people over 55 than they have been in the past. Which in turn means a larger pool of living donors, and, again in turn, means more hope for the people waiting for a kidney.
The OPTN/UNOS study was published in the American Journal of Kidney Diseases; I assume the September edition. Since that’s not the sort of publication I frequent (I’m a Vanity Fair girl, myself), I got the news from Reuters Health, which posted an article on September 18.
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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.)
- Gift of Hope, Red de Donantes De Organos y Tejidos, en español
- LOLA, Organizacion Latina Para Crear Conciencia Sobre el Higado, que tiene una página sobre donantes vivientes en la sección de “Donacion de Organos y Tejidos,” o aquí.
- New York Center for Liver Transplantation’s “En Sus Propias Palabras,” un video maravilloso y informativo. (This is available in Arabic, Korean, Chinese, and Russian as well!)
- New York Center for Liver Transplantation’s “Quiz” en español, que enseña mucho 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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My bags are packed for a rather whirlwind ten days. I begin in New York City for the weekend…
- State of New York:
- 276 living donor transplants conducted so far in 2008
- 182 deceased donor transplants
- 9,268 people waiting on the transplant list
…then go on to Montreal, Quebec, for the week…
- Province of Quebec:
- 46 living donor transplants conducted in 2007
- 403 deceased donor transplants in 2007
- 1,106 people waiting on the transplant list
…and then wrap up the following weekend with some of my dearest friends in Iowa.
- State of Iowa:
- 21 living donor transplants conducted so far in 2008
- 29 deceased donor transplants
- 489 people waiting on the transplant list
Everywhere we travel on this planet, there are people waiting for the gift of life and brave, generous, compassionate people considering giving that gift. If I had my way, I’d meet everyone of them every where I travelled. As it is, I’ve been lucky to meet a few of them, and to learn quite a bit about the local transplantation scene along the way. This particular set of travel won’t include any stops at transplant centers, unfortunately, due to my “day job.” But as with every time I travel, I stop to do a little research about the situation there to round out my knowledge. It’s all going into a database that I hope becomes useful to the transplant community and my readers over time.
If you’re one of my fellow transplant community friends and you see me traipsing about in your town, give a wave! Better yet, send me your insights – I love to learn, the better to share.
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I spend a lot of time diving through the transplant data that UNOS publishes, which is marvelously easy to do on the organization’s Web site. One of my favorite stats to look up is one of the simplest ones they offer: How many living donor transplants have happened so far this year? It’s heartening to me to see those numbers, even though they represent the pain, suffering, sadness, and emotional hardship of people who needed transplants.
I suppose I enjoy following the data most because it reminds me just how not alone living donors are in this country. Case in point: As of now, UNOS reports that 87,987 living donor kidney transplants have been conducted in this country since 1988 (the earliest year UNOS includes in its online reports). 87,987! That’s about the population of Trenton, New Jersey, or Duluth, MN. That’s almost enough people to completely fill the Rose Bowl stadium in Pasadena or Wembley Stadium in London; it’s heftily way too many to fit into the confines of Lambeau Field in Green Bay. Imagine walking through the streets of Trenton or Duluth and knowing that every single person you encounter in the city limits is, like you, a past living kidney donor. And knowing that every year about 6,400 people will be moving to town! That’s right. If you’re donating a kidney this year as a living donor in the United States, you’re in the company of about 6,400 others. Out of a population of 301 million people in the U.S., 6,400 is not a huge number. But it’s far, far away from being alone.
For living liver donors, the numbers are smaller, largely due to the riskier nature of the surgery in the years leading up to the past few. (With new advances and increasing proof of success, I wonder how much living donation will increase for liver transplants.) To date, my living donation of my liver to Joe was one of 3,588 such transplants in the United States since 1988. About 300 happen per year. That’s hardly a city, but it’s enough to fill in a nice little section or two at a stadium. It’s more people than I’m friends with on Facebook and LinkedIn combined!
Still, the yet-relatively small numbers we represent within the greater U.S. population just underscores the importance of sticking together, of finding each other and connecting when we can.
All the nation’s living donors: Notre Dame stadium couldn’t hold us!
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