My Cause

[kitkatz]

Ummm. Hey Beth what is YOUR blood type?

[George Jung]

Here is a potential reply.  Thoughts, comments, advice?

Hi Beth,

Thanks for taking the time to read my message.  I am attempting to do anything and everything I can to raise awareness of organ donation in general, whether it be living donation (kidney, liver, bone marrow, etc.) or cadaver donation (previously mentioned, lung, eyes, skin, etc.).  There is a serious need for all these types of consideration from the world population. 

Maybe I was unclear, it's not that the mention of successful transplants offends me (I read positive stories all the time) but what would offer a true sense of hope more than that would be for people like yourself to be tested for a matching donor, sign donor cards, and talk to people in your network of friends about me and the need for many, many others in my position.  I would like to hear stories about the future, not necessarily the past. 

 Many other causes are much more proactive than organ donation.  For example, leukemia, Alzheimer's, cancer, just to name a few all have their own walks, regular fundraisers, awareness campaigns, and there is much attention brought to these conditions throughout the year.  When was the last time you or someone you know did a 5k for organ donation or kidney disease.

I don't have to be a "lucky" one I just need someone to come forward and help.  It should not be left up to chance when we as human beings can make it happen for one another.  Thank you for thinking of me although I hope you realize that you can do more.

Love, George

[George Jung]

One problem I have with organ donation awareness campaigns, of which there are countless instances, is whether lack of awareness is really the problem for the stagnant donation rates in the industrialized world.  For example, I conducted a survey among all the dialysis nurses at the place where I was dialyzed for years, asking them if they had signed a donor card.  The overwhelmingly predominant answer I got from them was: "I never thought of it"!  How on earth could people who are undoubtedly a thousand times more aware of the need for kidney donation and the numerous tragedies that result from inadequate donation rates "never think" of signing a donor card?   
Raising awareness of the need for signing donor cards will not work.  What is needed is some way to change Western consciousness to make it more caring about other people so that they want to donate something whose loss they will not even be able to experience but whose importance to others can be a matter or life or death.

I know what you mean.  http://ihatedialysis.com/forum/index.php?topic=3618.0

I completely disagree.  The law recently passed here in NC will be effective in making a difference, imagine if it were universal.

I think it is called being compassionate.  Again, one has to start somewhere, start small.  It's kinda like a retirement account....compounding and building.  Any type of construction goes through the same basic process.

[okarol]

Hi George,
I admire what your uncle Al has done for you - every kidney patient should have an advocate - a family member or friend - someone who can step forward as he did to introduce the situation and inform other's about the need. Many times a patient is reluctant or even opposed to asking for help. It's a daunting process with many up's and down's along the way -- having family support makes the road a little easier.

Your letter is powerful because it gives a glimpse of what you are facing. Personalizing the situation helps spread the word. It's not just "somebody" - but it's now our cousin, our neighbor, my hairdresser's nephew -- and the story opens awareness where it previously didn't exist.

Jenna's donor originally read about a man in the newspaper and was compelled to make contact and be tested for "David in Pennsylvania." Due to an antibody crossmatch their surgery was not to be -- but the road continued for Patrice as she still wanted to donate -- and she found us. You never know what events are generated by reaching out and telling your story -- but the long term effect is good for everyone needing a kidney transplant.

I wish you the best of luck! 

[glitter]

Is it rude to just come right out to your relatives and ask  "Jack needs a kidney-will you please be tested to donate?" I respect that you do not want to force someone- but whats wrong with putting them on the spot and just writing a letter that says hey I need this- would you please think about getting tested to give  me one of yours?

My husband has an entire family that is not aware of his need (he was adopted-but knows where his birth family is-including a twin sister-as it was a within family adoption) I'm afraid if he doesn't point blank ask ( if I can't donate)- everyone will think someone else will do it. I sense a real reluctence on everyones part to ask point blank...why? 
 

[okarol]

Transplant centers need to ensure that there is no coercion, pressure or payment involved in the donation of organs. That's why it's a touchy subject, because, once asked, it puts people in the position of disappointing the recipient who needs a kidney. The pressure is implied. On the flip side, family members are often hesitant to offer, figuring that the patient is okay on dialysis, or that a more suitable donor is likely to come forward, so both sides do nothing.

[paris]

I think it easier for an advocate to ask people point blank, but as the one who needs the kidney, I can't just ask such a question.  We really need help from someone to ask those questions of relatives or friends.   Coming from a third party, it gives the information without people feeling pressured.  I think we need to have our transplant co-ordinator's business cards and give them to any one who casually says they will donate.   Here call this number--they will set you up for testing!!

[Beth36]

When my mom confided in me that her kidneys were failing, I had to find creative ways to ask my siblings what their blood types were because I was the only one she told.  I point blank told my mom I would donate to her if I could.  She never wanted anyone to know about her condition and I took it upon myself to advocate for her in our family.  I'm glad I did, I got 3 of us to test and my youngest sister was the best match.  None of us were asked by my mom to test or to donate, we just took it upon ourselves to do it.  We also had to do research to find a hospital that could treat her, as she has high antibodies.  Bottom line, you gotta do what you gotta do.....


Beth

[KT0930]

I'm one of those who's reluctant to ask someone to donate to me, so instead, I turn it into a conversation about the need for organ donors, period. I make sure people understand how simple it is to sign up, but that they also need to discuss their decision with their families since they'll be the ultimate decision makers, as well as talking to them about possible misconceptions they may have about being an organ donor (thanks a lot, primetime TV). I also point out that several organs can be donated while you're still alive and you can go on to lead a perfectly normal, healthy life. If, in the course of conversation, they offer to donate to me, I don't hesitate to give them my coordinator's phone number. That way, I don't have to come out and ask, but it (hopefully) serves a greater good, as well.

[George Jung]

Here is the reply I decided to go with.


Hi Beth,

Thank you for thinking of me.  I am truly grateful for any contribution you make, emotional or otherwise, to my well being.  I am not sure why you think the mention of other successful transplants offends me but that couldn't be farther from the truth.  As far as being one of the "lucky" ones.....maybe that was just a poor choice of words but luck has nothing to do with it.  It was not luck that made you a survivor was it.  I would think it would be more reasonable to credit medical research, a good team of doctors, a strong support network from family and from the community, which in return enables an individual to find the strength within themselves they need to survive.  I think it is wonderful what Kate is doing with her efforts to raise awareness and funds, it is my wish that one day the public will know what the green ribbon is just as they do the pink or red and there will be a campaign equal to anything that is just as serious.  I want to hear on the news about events for organ and tissue donation just as I do for Alzheimer's, leukemia, cancer, and AIDS.

I am always willing to discuss anything about myself and my condition, if you have any questions please don't hesitate to ask away.

Love, George

[paddbear0000]

Very nice George!