01 December 2007

Barn Raising

Politica spent the day at Mississippi Friend's house, working with a group of contractors and friends clearing out two of the bedrooms in the Victorian house Mississippi Friend and Quiet Friend bought, intending to restore it so they could grow old together in the city. Shortly afterwards, Quiet Friend got diagnosed with an incredibly rare cancer, and time that might have been spent on the house got redirected to doctors, hospitals, and sickbeds. Quiet Friend is now incredibly-rare-cancer free, but has recently been diagnosed with another cancer, one which isn't responding to treatment. So he needs a bone marrow transplant. MF wants to ask her parents and in-laws to come help take care of her/the house/their child/QF during the transplant and recovery, but there's no place in the house for them to sleep, those other bedrooms never having been restored. So Politica is organizing a group of people willing to donate time and/or money to get at least one other bedroom habitable. It's a good thing, and it is at least a thing we can do in the face of the medical problems plaguing them.

We have another friend with a different and rare cancer who'll be having another kind of surgery next week. This surgery should set him up well for a multiple organ transplant sometime next year. I've blogged before about Annika and Moreena's experiences and the importance of talking about organ donation. Now I have two other friends waiting for transplants. I missed the work party today because I was taking care of Curious Girl. The least I can do is remind anyone reading this that organ donation saves lives. Shareyourlife.org has links to organ donation information in the United States, and you can get more information about organ donation at http://www.organdonor.gov/myths_and_facts.htm. The National Marrow Donor Program has information about bone marrow donation in the US. I hope more people I know never need the services here--but too many people I know are already waiting.


Inside the Philosophy Factory said...

My thoughts are with you and Politica. It must be difficult to have so many friends in trouble. They are lucky to have you around to help.

Songbird said...

So sorry to hear all this, but what a wonderful thing to be doing for your friends.

Dave said...

Over half of the 98,000 Americans on the national transplant waiting list will die before they get a transplant. Most of these deaths are needless. Americans bury or cremate about 20,000 transplantable organs every year. Over 6,000 of our neighbors suffer and die needlessly every year as a result.

There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.

Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

-Scott (Campaign Manager) said...

Thanks a ton for helping spread the word on the importance of organ/tissue donation and sharing your personal ties to the issue. I'd encourage any Illinois residents to check out our Donate Life Illinois effort, working to register 3.5 million people in the state's new donor consent registry by April 2008.

A lot of folks are still unaware of the new registry (that took effect on Jan. 1, 2006) and the need to re-register after that date to ensure your wishes as a donor are honored. The donor consent registry will help save hundreds of more lives each year...crucial to the more than 4,700 Illinoisans and 98,000 people nationwide awaiting a second chance at life.

Illinois residents can take a moment to help save these lives by registering today at www.DonateLifeIllinois.org.


Scott M.
Donate Life Illinois- Campaign Manager

Bardiac said...

I'm sorry to hear about your friends, Susan. I hope they get well and have good treatment.

Jody said...

I'm sorry about your friends, Susan. I think the work you're doing to improve their house sounds wonderful.

I hesitate to turn this post into a debate, but the problem with Dave's campaign is that it would needless penalize people who simply lack the information or resources to register as donors before their diagnosis with a life-threatening illness. We know that many people, especially in at-risk communities, simply don't have decent information about all aspects of health care. To say to a child or adult, "you're at the back of the line because, lacking a primary-care doctor or the language abilities to understand the donor form on your drivers'-license application or the access to counselors who can advise you how the program works, you never signed a donor form yourself" seems needlessly cruel.

Organs should go to those with the greatest need, as determined by UNOS and other donor registries. IMHO.

I hope families confronting their worst nightmare make the choice for donation and your friends receive donor organs very soon, Susan.

susan said...

I have been debating whether I should delete Dave's comment, actually--to my knowledge he is not a regular reader and I think he arrived here simply to post that comment. I do think that organs should be allocated on the basis of need (surely a complex moral and medical undertaking) and I don't think the framework of his organization ultimately promotes the greater good. (Plus, I would imagine that some people who are in need of organ transplants might have medical conditions that would preclude their being donors, no? It seems needlessly restrictive.

niobe said...

Reading your post, I was struck by the sad capriciousness of life. Reading the comments, I was struck by the enormous gaps in our ability to remedy it, since, as you point out, even allocation on the basis of need is complex and, ultimately, subjective undertaking, since "need" is susceptible to so many shadings and interpretations.