I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: George Jung on September 22, 2007, 10:33:44 AM
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As I begin my campaign to find a living donor I intend to raise awareness for everyone in need of an organ donation. This site has been helpful beyond belief (that means all of you) and my vocabulary can not describe my gratitude to Epoman. I would like to include you all in the mission at hand and so I want to share with you something I am sending to my growing support network. I have not mailed it yet in part because I would like your input, both positive and negative. Thank you for being part of this and being my friend, regardless of weather or not we always see eye to eye.
Hello Friend,
I first want to thank you for taking time to think about an earlier e-mail sent to you from my Uncle Al. I feel fortunate to have someone willing to dedicate the time and effort he has so willingly and selflessly done. However, Al is just a small part of a growing support system for me in these difficult days, past, present, and future . But what make this system truly powerful is the wonderful support that comes from all of you, each in your own individual way .
I have learned many things from loosing nearly everything, most importantly I think, is how and why not to take things for granted. I truly appreciate you and our relationship however it is you perceive it to be. It is because of you that makes me who I am today as a person, and I thank you, I am proud of who I‘ve become. I will try not to be too emotional or “preachy” in my message and be true to myself by being straight forward.
I have often wondered what my purpose in this life is, and it is continues to be unclear today, but I do at least have a cause now, a reason to do something good with the time here, and that cause is to raise awareness for the need of helping others in the way of organ donation. There are many people who are in need and we all can help in some fashion whether we realize it or not. A good place to start is to make sure you are a registered donor and your family is aware of your wishes, so please consider doing so if you have not already. Just because of your personal life choices does NOT mean you can’t help, today, or when you leave this earth.
. Organ donation has become something very important to me since I need one to return my life to a manageable, independent, state. You may look at me or see a picture of me and not realize that anything is even wrong with me but if you want to see the truth, the reality of it, I invite you to visit me during one of my (dialysis) treatments. You may even ask “what is dialysis?” Allow me to explain briefly, it is life support, I must have these treatments in order to live, without them toxins will build in my blood and kill me in a matter of a few short days to weeks. I have a chest catheter that travels into a main artery in my heart, this is my “access“. When I go to a treatment I am hooked up to a machine via the chest catheter and my blood leaves my body through one tube, travels through a machine who’s job it is to clean it (replacing the function of my native kidneys) and then returns it to my body, the process takes 4 hours, three times a week. Put aside the physical aspects like nausea, headaches, fatigue like no other, there are significantly more traumatizing emotional/psychological effects.
There is a cold, harsh reality to kidney failure that too often takes a back seat to other life threatening conditions like cancer and such. Believe me, having a vital organ fail is an extremely daunting thing to face. It is not easy to open myself up for the world to see but the reward is worth it to me, the ability to influence another, even in the slightest way. Seems like everybody knows somebody that was on dialysis and they came out of it okay, and “they are doing fine”, well let be the one to tell you, it is not something to blow off or minimize. Yes I am a strong person but each day takes a little more out of me and it is not just something that will pass and I will be fine. This condition deserves to be taken as seriously as any life threatening condition. I am sure you have thought at least once that if you were hospitalized and had to be put on life support would you want your family/loved one to keep you going or pull the plug, right? Well that is a reality that I am faced with every day.
Please, if you are interested or think you may be interested in any type of donation I whole heartedly encourage you to do so and at the absolute least to look into it, discussion with a professional. You CAN GIVE the greatest gift there is, LIFE. DO NOT count yourself out. If you have any questions on how you can make a difference I would love to talk about it with you. I realize it may be difficult to bring up this somewhat taboo subject (mortality) so it is my intention to assure you that I am more than willing to discuss any thoughts, questions, comments or concerns you may have.
I have become an advocate of helping others in this fashion and in any capacity really, whether it be listening to a friend that has something to share, giving advice from my personal experiences, or any way I know how. We are all here for each other to help when in need and to celebrate our joys. I hope you can take something from me as I have taken from you. Remember that tomorrow is not guaranteed for anyone, live, love and enjoy each moment for what it is and what it can be.
Well I said I didn’t want to be “preachy” so …… too late for that huh! Again, thank you for being a part of my life.
Wishing you joy and happiness, George
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:thumbup;
Well done.
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:clap; AMEN George
I signed my donor card when I was in the 20's. My family knows my wishes and I have told them I'll come back and haunt them if they don't do it. I wanted to give my husband a kidney but they said I was pre-diabetic, so that didn't work out. I tell anyone that will listen to me to get tested now to see if they can help someone and to be sure to sign their donor card at DMV.
Keep up the good work. If only one person listen and does something, that is a wonderful gift.
Thanks George for including us in your mission.
Kathy
willieandwinnie
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:thumbup; Your words were perfect. Very well said. Your courage can and will be an inspiration to many. If just one person steps up to donate anything; blood, bone marrow, any organ, you will have made a difference in this world. But then again, you have made a difference in this world just because you are here!
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nicely said. :thumbup;
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:clap; Very well said! :clap;
When I was a sophomore in college I had to do a persuasive speech. I went to the DMV and got donor cards and did my speech on organ donation. When I finished up my speech, everyone signed their cards and turned them in to me. I took them all to the DMV and turned them in.
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It is also important to work for more fundamental reforms of the whole organ procurement system, since relying on people to donate an organ is always going to be ineffective in a society where we are trained from birth to be competitive, selfish, and to do nothing without getting money for it so as to be good capitalists. First, many countries, such as Iran and the Philippines, allow people to purchase a kidney from a healthy donor, and an increasing majority of bioethicists are agreed that this is perfectly ethical. Second, many countries operate on a presumed consent system, in which the state seizes all cadaver organs for donation as soon as people die, unless those people have previously notified the government in writing that they do not wish this done. In all those societies, such as Spain, Belgium, and Austria, the waiting list for a transplant is essentially non-existent. Third, a compromise solution is to encourage the survivor's next of kin to donate the cadaver's organs by paying for the funeral costs of burying a body from which all the organs useful for transplant are donated. The state of Pennsylvania is experimenting with this idea by offering people the ludicrously inadequate amount of $300 to donate a deceased relative's organs.
One reform that definitely could and should be undertaken is to deny the relatives of the deceased the right, which they now have, to override the deceased's recorded wish to donate his organs and to bury them instead in the ground, where they can feed cemetery worms rather than save human lives. To give priority to the mild satisfaction people may get out of burying the body of a relative intact with all its organs, over the claim of dialysis patients to live, is symptomatic of a society gone insane. Relatives don't have the right to override the wishes of the deceased regarding how his property is to be distributed in his last will and testament, so why should they have the right of override over a decision to donate organs?
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Good job George.
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stauffenberg, One thing at a time dude. It is simply my goal to raise awareness right now in my network of family and friends, not to change the world, possibly as I continue to grow so will the cause. Not that I disagree with you points and if changing the world is a by product of my actions I will most defiantly be a proud person. I plan to start small, one has to have a beginning, a starting place. Microsoft didn't just open it's doors as the company that it is today now did it.
I only very recently have come to grips with my life to even attempt to turn it into a positive movement. How about you, where else besides the small community of IHD do you use your intellect to influence the direction of where organ donation is going? You always seem to have educated an educated response and I'd like to join you in your efforts one day.
One reform that definitely could and should be undertaken is to deny the relatives of the deceased the right, which they now have, to override the deceased's recorded wish to donate his organs and to bury them instead in the ground, where they can feed cemetery worms rather than save human lives. To give priority to the mild satisfaction people may get out of burying the body of a relative intact with all its organs, over the claim of dialysis patients to live, is symptomatic of a society gone insane. Relatives don't have the right to override the wishes of the deceased regarding how his property is to be distributed in his last will and testament, so why should they have the right of override over a decision to donate organs?
A law was recently passed here in N.C. pertaining to this very issue. If a person is a registered donor through their local DMV it is legally binding.
http://ihatedialysis.com/forum/index.php?topic=4919.msg70857#msg70857
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:clap; Nicely said my friend, I know if i had 2 good kidneys, this letter would definetly convince me to do the right thing, good luck to you George and please let us know how it goes :2thumbsup;
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George, I feel the exact same way. I have always lived with kidney disease, and have always believed in organ donation, however waiting on the list has made me quite an outspoken advocate for donating. Your letter says a lot that needs to be said. Well done!! :2thumbsup;
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George, your letter is AWESOME! :clap; I wish I could write like that! I was going to send something like that (although a much shorter version!) to my friends and family, but I had a horrible time trying to come up with something. The trouble is, very few people i know are even aware of my situation, so I'm a little hesitant about doing it.
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Paddbear, maybe George wouldn't mind if you emailed his letter to your friends and family. Explain that he is someone going through the same thing you are and thought his words might help them to understand what you are going through. And maybe now is a good time to inform people who are close to you exactly what is happening. It is hard to open up and be vunerable, but it could get people thinking about organ donation that never even gave it a second thought.
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I think that is a wonderful letter! I signed my donor card over 7years ago here in VA and I told my entire family my wishes. My husband did the same. We both tested to donate to my mom but my sister was the best option. I may not have been the best match for my mother but once I am through having children (if I'm so lucky to have another soon), I wouldn't rule out being a living donor at all. Having a loved one in a life or death transplant situation has definitely opened my eyes and I always encourage people to sign their donor cards on their licenses...we all have to do our best to get the word out!
Beth
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I've always wished I could donate my organs, but having been diabetic since I was 6 kind puts a damper on it. I feel SOOO guilty every time I get asked at the DMV, very loudly, whether I want to be an organ donor and I have to say no. I've never even been able to donate blood! :(
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awsome job :clap; :clap;
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Paddbear, maybe George wouldn't mind if you emailed his letter to your friends and family.
I would not mind at all if anyone wanted to send this letter, whether it is in it's original form or any other, please use it if you would like, however you would like.
Well I sent it out today in e-mails (I think, unless I messed up. It was a large group so I'm not sure if I did it right.) should I receive any interesting responses (not too personal) I will certainly share. Thank you all, George
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Thanks! Now I just need to work up the nerve to do it!
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Thanks! Now I just need to work up the nerve to do it!
I understand 100%. It has taken me nearly a year to get to where I am. When the time is right for you, you will know it.
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I am not sure how to reply to this. What would you say?
Hi George,
I was happy to get your email and Al's as well. I know that to a certain extent we don't really even know each other
but you have always held a special place in my heart. We are not the closest of families, geographically or otherwise
but when push comes to shove we are there fo reach other. I am glad that you have a strong support system locally and
I am glad you consider us as part of your extended network. I know we all have a lot to learn about organ donation and
I'm glad Al will keep us apprised of the process. I'm sorry if mention of other successful transplants offended you. It was
certainly not meant to trivialize your situation but rather to offer hope. We all hope and pray that you will be among the
lucky ones - that you will be the success story we can share with others - it would be too painful to think otherwise.
Please know that you are in our thoughts and prayers and that we love you.
Love
Beth
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Beautifully written , George.
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I am not sure how to reply to this. What would you say?
Hi George,
I was happy to get your email and Al's as well. I know that to a certain extent we don't really even know each other
but you have always held a special place in my heart. We are not the closest of families, geographically or otherwise
but when push comes to shove we are there fo reach other. I am glad that you have a strong support system locally and
I am glad you consider us as part of your extended network. I know we all have a lot to learn about organ donation and
I'm glad Al will keep us apprised of the process. I'm sorry if mention of other successful transplants offended you. It was
certainly not meant to trivialize your situation but rather to offer hope. We all hope and pray that you will be among the
lucky ones - that you will be the success story we can share with others - it would be too painful to think otherwise.
Please know that you are in our thoughts and prayers and that we love you.
Love
Beth
I don't know how much help I can be in that regard. I remember reading somewhere that you were having some kind of issue with Al, but I can't remember what it was, nor can I find it through the search function. I think that issue might be of relevance to an answer. Also, how is Beth related to you? Perhaps just a simple "thank you for keeping me in your thoughts" would be enough. Again, not being totally familiar with the situation, I'm not sure how helpful I can be. Good luck!
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George, This is the problem I have. People don't know what to say, so they say stupid things. By saying she didn't mean to trivialize, she did. I am in a low spot today--so my anger may show a little too much. You will be among the "lucky" ones IF someone steps up. You want to be more than the success story THEY can share with others. Your want to live a normal life that they take for granted. I do appreciate people's thoughts and prayers--but that is passive. Take a little action---were a green pin to spark conversations. Put Donate Stickers on everything--just bring it to the front so people can be better informed. If one doesn't feel comfortable donating an organ(I do understand that), there are so many other things they can do to help. Told you I wasn't in a happy place today!! So, continue to pray and think about me----------but tell me you will help spread the word on organ donation. How simple is that? Ask how I really feel. Don't tell me how tired you are. Ask if there is a simple thing they can do-a meal, running an errand. Don't tell me how much you hate your job and wish you could be like me and stay home!! Sorry, George, if I said too much. Just one of those days you need to not be around people. Susie Sunshine doesn't live here today :rofl;
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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.
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I am mainly talking about friends and family, those who live in your circle of life. My family rallied with pink ribbons, pink everything for my 2 sister-in-laws with breast cancer. They joined in the walks and any event they could participate in. The same does not happen with this disease. So, it is my goal to try to make them understand this journey I am on. George's email to his group of people was well written and my daughter is passing it on to our family. Can't change the whole world, but I can try to make a difference in my llttle world.
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Ummm. Hey Beth what is YOUR blood type?
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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
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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.
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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! :cuddle;
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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?
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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.
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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!!
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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
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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.
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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
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Very nice George!