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Kudos to The Big Donor Show!!!

Discussion in 'Steve Smyth' started by Steve Smyth, Jun 2, 2007.

  1. Steve Smyth

    Steve Smyth Lead Axe

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    For what they did in raising world-wide awareness to the FACT that there is shortage of kidneys available to those, who like myself, suffer from kidney disease!

    WARNING: If you're not prepared to read this entire post, and respond to it with intelligent and educated statements, stop now. I don't want to hear your bullshit, and neither does anyone else.

    I'll admit, given my newfound, and recent experience with the disease, of which there are many factors that "qualify" one to be diagnosed (in the case of mine, it was a genetic brith defect; being born with only one, and it had scar tissue wrapped around the ureter, poisoning my kidney with waste since birth, unbeknownst to any doctor or myself until only Jan. of last year), that when it was announced that they were doing this, and the donor had a terminal disease, I was skeptical that ths was for real at all.

    See, if someone knowingly puts a kidney in someone else's body, from a donor who has a terminal illness (especially cancer), there is more than a small chance, they are going to give that recipient that same terminal disease, especially cancer.
    Long story short, there was a case where this happened in the US recently.
    A person had offered their organs for donation, and the kidneys went to 2 separate donors, and were transplanted, without prior knowledge of the autopsy of this person, which revealed they had died of ovarian cancer. That cancer had spread to all of the organs, in this case, the donor's kidneys, and once transplanted, both recipients were soon diagnosed with cancer, and both soon died, within a year or so after transplantation.

    So, I thought, either the doctors who approved this lady to be on this show, doing the same thing, were either seriously lacking knowledge, or this had to be bullshit. Turns out to be the latter, and when I found out the reason today, I was glad to hear that it was a hoax, and the real reason why this show had happened!

    I am an advocate for organ donation, and any chance I get nowadays, I advocate as much as I possibly can, trying to direct you to where you can find websites to research or donate to the cause, either with an organ (either living, or signing your "organ donor" card, so that your organs may be donated after death), and will continue to do so, until the day I die!

    This is an important issue, and I seriously hope it's a wakeup call to the powers that be, the same ones 30 years ago, who made organ donation much more possible in the US (and the rest of the world has or is following finally), as well as gov't funding available to those who cannot afford treatment for any type of kidney disease (i.e. dialysis, medications to combat symptoms,etc.). I hope it's a wakeup call that 30 years later, the restrictions that have been "ethically placed" in the area of "living donor" kidney donation, seriously need to be REVISED, and CHANGED, to allow more people who are willing and able to donate while they are living, to those in need.
    Why would I suggest that you might ask?I'll tell you why.
    Cadaveric donation, while is effective in a lot of people for those who receive it, is in short supply. I know, I was on that list originally, and was told my wait would be up to 4 1/2 years. If one arrived sooner that I would be a match for, then they would offer that kidney for donation, but that required a few things as well. This organ could become available at any moment, so I would have to "stay local" to the hospital, continue on dialysis, until that time that it happened, if it happened at all during that period being told. My "job" wouldn't happen at all during this time. If it didn't happen during that time, I would remain on the list until it did happen. Normal wait time in the US for cadaveric donation?

    As per my area, the Bay Area, here's the answer: "The waiting time in the Bay Area for a deceased-donor transplant ranges from three to six years and is primarily dependent upon blood type." Not to mention several other factors in that person's life which may take them immediately out of the equation, and the kidney is useless to you, and will go to someone else, who it suits more, or it's discarded. Cadaveric kidneys have to be transplanted within 13 hours (at the latest 24), or they're useless to anyone.

    Google this set of words:cadaveric kidney donation wait time , and you'll find out the wait time for those afflicted in your area.

    Why am I an advocate for "living donor" donation? Simple.

    No.1 It's long term success easily outweighs the long term success of cadaveric donation. It's a proven fact. See this link, just one of many:http://www.ncbi.nlm.nih.gov/entrez/...ve&db=PubMed&list_uids=10504507&dopt=Abstract
    I was informed that there is an average of 15 years more longevity in living donor related transplants vs. cadaveric, from the hospital where I receieved my transplant. Who wouldn't want that possibility to be more available, certainly when there are brave and selfless people in this world, who are willing to donate? And, although it is classified as "living related", your relatives are not the only ones who can help in this situation. Though this is the best chance of survival of the kidney, it's not always possible. The person who donated his organ to my cause was not a "blood relative"; that terminology needs to be redressed, as well as the "ethical value" placed on it, in my opinion. Again, if a person is willing and able to donate a kidney to someone in need, should ANYTHING OR ANYONE be able to stand in their way?

    No.2 I feel the same feelings now, as then, before my transplant, feelings of hopelessness, for anyone suffering from kidney disease, finding themselves in this plight I found myself in, not just a year ago, and am by no means out of, but have been "treated" for, with transplantation.
    I want to see every person I have met, either in person, or online, going through the same fate, to be able to have a chance at receiving a living donor's priceless gift of a second chance at life!

    No.3, I was lucky enough, as fate would have it, to find my "match", by being active in my care, going public with my situation (I'm not alone; there are many people doing this), and having many people step up to the cause, and offer their kidney for donation. I was one of the lucky ones! And I know it, for more reasons than I will share here, but simply, someone on my list, turned out to be a match that was the best, and the transplant surgery went forward, and has been deemed a success. I'm now at 5 months, nearly 6, and feel great! Better than I have in years!Later this month, I'll issue another health update here on my forum,letting everyone know where I'm now at after 6 months, and what the future holds for me in this "brave new world" I now face.

    Yes, I am advocating living donation here, for the pure and simple fact that it would eradicate the shortage now being realized world-wide, by more than half! It is my hope, that awareness to this cause will now have a permanent spotlight on it, and those like the brave and selfless people who stepped forward to help my cause, will be able to help others who are going through kidney disease of any kind, and the immediate treatment for kidney failure, dialysis. Trust me when I say, "living" on dialysis is NO WAY TO LIVE.

    For those who may consider becoming a living donor, I suggest referring to this website:http://www.matchingdonors.com/life/index.cfm This is www.matchingdonors.com , a website that in most recent times, has come under fire from doctors and lawmakers, who decree this to be a most unfit way to the path of donation. Long live this site, I say!!!
    A note as well: there are many more websites listed on my "links" page, on my website.

    Yes, I am an advocate for donation of any kind, but also want to stress that if you're unable/unwilling to become a "living donor", but still want to help in some way, you can always donate financially to the cause. Here's a website for anyone in the US to check out:http://www.donatelife.net/HowYouCanHelp/ from the website of Donate Life America.

    I hope this will help the world at large to reconsider the "ethical" limits that have been placed on "living donor" kidney donation, causing a major change to the way this is handled legally, and ethically, with respect to the attempt in other parts of the USA, and of the world, to limit "living" donation to only relatives.

    I welcome all comments and opinions to this post, but please be intelligent enough in your posts. You're not the only ones reading this, believe me.

    Thanks,Steve
     
  2. flying_whale

    flying_whale Rome 64 C.E.

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    Steve, I will start by saying that I'm happy that you got a donor and a new kidney and another chance at life. I hope that no matter what happens you will get through whatever arises and keep making music. Your music means a lot to me! I hope you will be able to get out very soon of the emotional plight you were mentioning above

    On the issue of cadavreic vs living donation, I'm with you here. I learned something vague about it in biology last year, but the link you posted shows it is better with scientific data. Moreover there is the communication aspect between the receiver and donor and the team of doctors treating this. You can't ask the dead about stuff that happened to them that might affect medical decisions. Sometimes medical records are incomplete or have bad information. I don't think there is that much of a chance to have bad medical data, but there is that chance too, and I don't think that one person out of a hundred thousand should go through the consequences of a bad medical decision.

    On the matter of ethics, I am a little radical. I think a person's right life no matter who that person is, and no matter their social class, wealth, race, religion, etc; trumps everything else, including ethics, insurance companies, healthcare costs. Although there are higher chances of finding a match with relatives, due to similar genes and all that, but there are also high chances to find a match with strangers. As far as science is concerned (according to my high school knowledge of anatomy) chances of finding a match are higher for people of the same race, or ethnicity, due to gene preservation for that group of people.
    my 2 cents. I will come back to this thread one of these days with a more intelligent and researched opinion on this
    paul
     
  3. RaferMadness

    RaferMadness Happy people Piss me off

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    Totally agreed on all points there Steve and Flying Whale. Though Living Donorship has its obvious benefits over cadaveric, there are many roadblocks in the way of Living Donors in this country. Stringent laws prevent Living Donors from receiving any compensation for their generous gift. (This ensures that people dont just start selling their body parts for money)o_O
    These laws make it nearly impossible for Living Donors to stop everything they are doing in their lives to undergo major surgery to save someone's life. Even if the donor is a family member the donor process can be halted by the simple fact that few can afford to stop work and responsibilities in order to save a life. The Donor's medical process is covered by the recipient's insurance in most cases, but living expenses and time off work are not. Even if the donor needs to travel in order to help, the travel is not covered by insurance.

    Our Government should rewrite these policies in the best interest of its people. 100,000 patients on dialysis nationwide, and in need of constant medical care, are surely a burden on Health Insurance, State funded health care, medi-care, hospitals, and State funded entities supported by our tax dollars and high premiums on our insurance policies.

    I think our Government is once again more concerned about how they can regulate medical advances rather than facilitating these advances in order to actually help its citizens help each other.

    As a friend and supporter I have also become an advocate Steve. Your experience has educated me to this need for policy change on the issue of Living Organ Donorship, and I am with you on educating others as well!

    Best wishes to you in your ongoing recovery and treatment of this disease.
     
  4. Charvel2000

    Charvel2000 Alone in the Dark

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    Hey Steve!!

    It's been a long time since I've been able to get back around the net, and check up on your progress!! It really makes us feel great that you (and the donor) are doing well, and that things went as best they could go.

    As far as donors go, I too have since 16, placed the organ donor spot on my license to be used as the medical world sees fit. Now... as far as my health goes, and the reason I was out of the running in offering you help.. is that my cholesterol count was off the charts (and still is without medication) even though I have O+ blood... meaning I can give to anyone with little to no side effects.

    Still..... even though that remains of my health, I will continue to offer my organs after my death. If my health issues aren't a problem, someone is sure to benefit. I believe it's up to all of us to let go of petty "beliefs" that we are tied to our bodies... and let society use what remains to better the lives of others.


    On a second note, and hopefully as time goes by and we understand more of what it truly means... is that we allow our medical community to continue the study of human stem cells. "IF" perchance, they are correct in even the most smallest of assumptions.... we'll someday be able to use our own DNA to replicate the organs we'll need for our own survival. So,... in my opinion, it's very important that we vote when we can, to allow the research to fulfill this destiny. Successful, and humanity would never again require anyone to go thru a transplant procedure, or have to live their lives tied to machines.
    (end of political rant!)


    Anywho....... it's really nice knowing that everyone's doing well. I'll keep in touch as best I can... and if you've lost your way to get in touch with me, just let me know in this thread.

    :headbang:
     
  5. Steve Smyth

    Steve Smyth Lead Axe

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  6. RaferMadness

    RaferMadness Happy people Piss me off

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    Wow man that's pretty cool. Its good to see the UK finally doing that
    sort of shared transplantation. This news must provide a great sense of relief
    for those on waiting lists; now they have options for donorship that they previously didnt have. I hope this step provides much needed surgeries soon, to more and more kidney recipients.
     

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