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Dialysis Discussion
Dialysis: Transplant Discussion
A bird in the hand is worth two in a bush.
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Topic: A bird in the hand is worth two in a bush. (Read 2707 times)
BrightKismet
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A bird in the hand is worth two in a bush.
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August 11, 2009, 05:05:26 PM »
The purpose of the following comment is not to upset or offend anyone. I am using the devils advocate argument in places in order to stimulate discussion and getting argument out of my head. If you may find a thought provoking discussion upsetting, then I request you do not continue reading further.
For the sake of argument, let us see things as a numbers game. If our kidneys fail and we don’t do dialysis, the chance of surviving very long is very slim to say the least. I don’t think anybody would argue with that at this forum. Even if one put the argument, “well, at least my life would be “normal” and I could do what ever I want, when I want, while my kidneys were good”. Because the total quality of life on dialysis far out ways the short lived “normal” and “healthy” life-style one could imagine to gain without it.
I would like to further understand the benefits of having a kidney transplant. Everything is about evaluating the risks and making decisions most fitting and responsible to our lives. So I would like to explore about having a kidney transplant the question, “Is it worth it?”
Immune System:
Our immune system protects us from all kinds of sickness and diseases. In order for the new kidney to be accepted, we have to have immune system suppressant pills (I have been even told for life). Isn’t this just asking for trouble. If we are still playing the numbers game, then regardless of how well your kidneys are, or if its failed after a year and you have gone back to dialysis, you have just opened the flood gates, opened the doors for every kind of disease, infection, virus, cancer etc. etc. into your body.
Even after some time, and lets say you are off the suppressant pills (for whatever reason), the damage could already be done. It could be a time bomb ticking away, waiting for the right combination in the future. A future that could have been yours if you let the immune system do its job. But you didn’t see that at the time, what you saw was and opportunity to improve the quality of life, your health was going down, you were sick of being sick and sick of the mundane grind of dialyzing day in day out. So you took your chance. Maybe your priority should have been to protect your immune system in spite of a foreign kidney, rather than protecting a foreign kidney in spite of your immune system. We are told that old people die because of sickness a, b, or c got them. But in reality the real reason is the immune system could not stop a, b, or c.
So would it be outlandish to suggest that those who choose to have a transplant are gambling with their lives (and please don’t reply with a truism that “life is a gamble”).
I suppose what I am saying is “a bird in the hand is worth two in a bush”. In other words, we have the bird (dialysis) in our hand, we are not going to die of starvation (kidney failure) too soon, we got something to eat. Now if we throw that away because we see two in the bush (kidney transplant), we may end up with two birds, but we may also end up with nothing (complications, death, diseases). Is that worth it?
Living Donar:
In my local paper right now is a front page of a woman who donated her kidney to her son. We see/read these stories all the time. But we never hear the failures. What happened to those previous lives that was so celebrated yesterday. If it was broken, it doesn’t matter, because we find new ones to champion on. How does it feel to sacrifice your kidney to someone and risk having all the complications, not least of which dying, only to find out it only lasted two months.
So I ask you,
what ever the chance of increasing the quality of my life, what right do I have of accepting a kidney from someone who would run the risk of reducing the quality of theirs?
Well, if you want to argue, people sacrifice their lives for the sake of loved ones. Then couldn’t one equally say, why don’t you sacrifice your life for the sake of sacrificing theirs. After all, they are not responsible to play with the cards dealt in your hands, you are. Is that worth it?
Hakki
EDITED: Moved topic to proper section: Dialysis: Transplant Stories - okarol/admin
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Last Edit: August 11, 2009, 10:17:00 PM by okarol
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cariad
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What's past is prologue
Re: A bird in the hand is worth two in a bush.
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Reply #1 on:
August 11, 2009, 08:05:49 PM »
Hey Hakki,
Interesting thoughts. Here is my take on it: the immune system is important, no doubt, but you are not obliterating your immune system with these drugs, you are supressing it. People without transplants - those with autoimmune diseases for example, also need to take these same drugs. There are plenty of ways to die, it is not always from a poor immune system. Cancer is not really an immune system issue, nor is heart disease, and these are two of the most common killers in the world.
High stress will compromise the immune system. Prednisone, a common immunosuppresant that is prescribed for literally hundreds of reasons, is just synthetic cortisol, often referred to as "the stress hormone" (although its primary purpose is metabolic). People compete for high stress jobs all the time. Perhaps ask them if their life's work is worth the possible damage to their immune system?
I did not choose to have a transplant - that was a choice made by my parents when I was a child. The donor chose to give up his organ and did not ask me one way or the other. He is still alive today. That transplant is only now failing after 33 years. I have had not one long-term complication. I have the beginning of osteoporosis (osteopaenia), but this runs heavily in my family anyway, and dialysis is not a way to avoid bone damage. Other than that, I can think of nothing.
I don't think of accepting a live-donor kidney (from my husband, as I plan to do) as a question of my rights. My husband has a vested interest in keeping me alive - because of love, because I am the mother of his children and even in kidney failure I help make his life easier than a single father who has to work full-time with no help. I know I do not do well on dialysis, and I consider it my responsibility to take the opportunities I have to stay alive and be there for my children.
I have talked about not accepting my husband's kidney. He finds the idea offensive. It is a delicate situation, and differs from person to person, but I can tell you that another friend of mine offerred a kidney and seemed pretty hurt when I said no. People who want to donate WANT TO DONATE. My original donor clearly wanted to donate. He ended up donating bone marrow to a stranger twenty years after donating to me. Really, some people want this opportunity to make a difference and be a hero to someone. Do you know the theory that there is no such thing as true altruism? I don't necessarily agree with the theory entirely, but I know the thrill I get from volunteering my time to help people, and I imagine it can be a similar feeling for those that donate. It is an accomplishment, something that they can feel proud of forever. How many people get to feel that way about anything?
Good luck in making your decision. Transplant is not for everyone, but it definitely was the best option available to me.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria
People have hope in me. - John Bul Dau, Sudanese Lost Boy
okarol
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Re: A bird in the hand is worth two in a bush.
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Reply #2 on:
August 11, 2009, 10:27:32 PM »
Cariad makes some very good points. A transplant is not for everyone. Some people are doing okay on dialysis and choose not to have a transplant. There are known risks for the recipient but these are hopefully minor and their quality of life is improved. But there are no guarantees as we have seen on this forum - some transplant surgeries don't work, or sometimes there are complications that can take a long time to work out. Some patients choose to wait for a deceased donor kidney, not willing to take an organ from a living donor. It's not a "one size fits all" world when it comes to kidney failure and how to treat it. A kidney transplant is one treatment, dialysis another - there is no cure.
For our daughter a transplant made sense. She was 18 years old when she started dialysis and never felt good on it. She felt sick and drained and confused for 3 years. We had several people offer kidneys, but one by one they were determined to be unsuitable. We were fortunate to meet a stranger who traveled from Ohio to California to donate to her. I realize how lucky we were, she's had no problems at all, and her donor is fine, having run the Boston Marathon twice since donating.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story --->
https://www.facebook.com/WantedKidneyDonor
Please watch her video:
http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock!
http://www.livingdonorsonline.org
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News video:
http://www.youtube.com/watch?v=J-7KvgQDWpU
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
Re: A bird in the hand is worth two in a bush.
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Reply #3 on:
August 12, 2009, 02:01:23 AM »
Good points bought up here. Exactly why we should never expect people to donate! If they want to then they want to, but it is a huge thing to give up part of a perfectly working body. I think people are amazing who contemplate donating, but I don't feel bad if it's not for everyone.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008. Now on PD with a cycler. Working very part time - teaching music. Love it. Husband is Paul (we're both 46), daughter Molly is 13.
RichardMEL
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Re: A bird in the hand is worth two in a bush.
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Reply #4 on:
August 12, 2009, 07:14:17 AM »
I agree with the idea that donation is not for everyone - both donors and recipients. There are a few IHD members who have long stated their cases for not wanting a transplant - and that is their absolute right to choose. Same with donors - those who choose to help their fellow man by donating are special people and very brave - and shouldn't be looked down on or given grief if they do not offer or decide not to (for whatever reason). It is a very personal decision and I don't think there's any right or wrong answers - everyone's circumstances are different.
As for the immune system and the drugs and all that. The way I see it - the benefit hopefully will (for me anyway) outweigh the potential costs. I am someone who loves to travel, I love to drink(er I don't mean alcohol!), I love to experience. These things are very reduced for me at the moment.. a transplant will, hopefully, increase my quality of life and allow me to get back to those things that I love to do in life. Sure, there are serious risks and potential complications to the immune suppression drugs, but there are risks and problems associated with staying on dialysis.. or heck I could get hit by a bus tomorrow. That's life. I'd rather get a couple of years of relative freedom with a transplant than not take the chance.
However that's my choice at the moment. Others will have different views (and heck if I ever get a transplant I may change my mind if it doesn't go well... but no I don't think so... it's a risk.. and at least I will have tried).
Everyone's mileage will vary.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!!
BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
tyefly
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This will be me...... Next spring.... I earned it.
Re: A bird in the hand is worth two in a bush.
«
Reply #5 on:
August 12, 2009, 09:10:59 AM »
I agree with totally with RichardMEL...... For me its a quaility of life.... I am a free bird type... and I love to travel, camp, hike, and just go places.... I would rather have lots of years doing that then many more years staying in and do dialysis..... I have never been a home body.... So I believe that it does depend on the person.... I am willing to take the risk..... Life is about risk..... and some people take more risk than others.... in all areas.
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IgA Nephropathy April 2009
CKD May 2009
AV Fistula June 2009
In-Center Dialysis Sept 2009
Nxstage Feb 2010
Extended Nxstage March 2011
Transplant Sept 2, 2011
Hello from the Oregon Coast.....
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The clearest way into the Universe is through a forest wilderness.
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chris73
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its me ...Chris
Re: A bird in the hand is worth two in a bush.
«
Reply #6 on:
August 12, 2009, 05:42:21 PM »
I had already made my mind up about a transplant b4 for i was told about all the risk and the complications that could happen and the success/fail rate.I knew in my heart that dialysis (hemo)was gonna be the death of me,I just had too many near death experiences while on the machine.extreme high BP for one and feeling like i was being cooked from inside out. As my time on the machine got increased by 30 mins at a time i begged my neph not to do it to me but he insisted it would be best for me.I had 10 potential donors tested and one by one got denied for one reason or another.As my hopes and willing to live had diminished ,wanting to be off dialysis seems like the best option for me as i was tired of being tired and wanting all the pain and suffering to end.I take a lot of pills to keep my kidney going ,that is a small sacrifice knowing all the risk and what could happen while taking them.I'll take that chance any day and do it all over again.My donor told the local paper about our experience and he still today has no regrets and hopes more people would donate.Here is the article..TY and God Bless!...........For years Jeff Young and Chris Holt have shared a love of racing and now they share a life changing experience
When Chris found out his kidneys were failing and he needed a transplant, he looked to his family, but it was Jeff who said he would do anything to help and he meant it.
“I had an extra one and if I was compatible, he was more than welcome to it,” said Jeff Young, who donated his kidney.
What some said was crazy, Chris said was kind. The doctor told him most patients have to wait up to six years for a donor.
“As soon as I got a call from the donor coordinator that he was a match it just seemed like my spirits lifted, there was hope and all this pain and suffering would be over with,” explained Chris Holt, who received a kidney.
Thanks to a friend and a match the pain and suffering is gone.
Jeff says for two and a half months the golf clubs and the race car are going to have to stay in the garage, but he says it’s just a small price to pay for giving the gift of life and he would do it again.
“If I had four kidneys I’d give three more away,” Young said.
With no regrets and only gratitude these two share a bond, most have never experienced.
“I hope he dies an old man with my kidney in him,” said Young.
So far, Chris’ body has accepted Jeff’s kidney, but there is a chance that one day that could change.
In the mean time, Jeff has headed back to work , while Chris still on medical leave
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11/10/07 esrd
12/07/07 permcath placed
dialysis started 2 days later
transplant 4/15/08 from close friend and coworker of 12 yrs. Thanks Jeff!!
okarol
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Re: A bird in the hand is worth two in a bush.
«
Reply #7 on:
August 12, 2009, 09:21:27 PM »
Hey Chris73 - I remember reading about you - different news story - I had posted it here
http://ihatedialysis.com/forum/index.php?topic=8456.0
Living Donors ROCK!
Logged
Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story --->
https://www.facebook.com/WantedKidneyDonor
Please watch her video:
http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock!
http://www.livingdonorsonline.org
-
News video:
http://www.youtube.com/watch?v=J-7KvgQDWpU
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