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Author Topic: 2 different conversations  (Read 4159 times)
YLGuy
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« on: August 29, 2009, 10:15:51 PM »

I had 2 different conversations today. 

1: I was in the convenience store chatting with the owner/clerk.  He told me how he was upset with his cousin who lives in India.  His cousin sold one of his kidneys for $2,500.00 U.S. dollars.  He was upset at his cousin for selling it and upset at the person who traveled there and took advantage of his cousin's bad fortune. 

2: My son was very angry at me.  He questioned why I would not let him donate a kidney to me.  The, "when you are a parent you will know why" explanation was not suffice.  I further angered him when I told him that I was not sure if I was going to accept a kidney from the other 5 people who have offered.  I tried to explain that I really care about these people.  Having them donate to me puts them in danger.  I told him that I almost died when I was 10 because I had a reaction to the anesthesia they used.  I would want to know all the risks that they would be exposed to and then make a decision with them.  He is a very caring young man who donates blood on a regular basis because I used to and cannot any more.  BTW, my son turns 18 on 9/4.


Any thoughts on either conversation I had today?
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Rerun
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« Reply #1 on: August 29, 2009, 10:31:04 PM »

1)  The guy from India can be mad if he wants to but people in the US don't get paid a dime and they donate.  If I win the Lottery I'm making a trip to India. 

2)  Your son may have children some day and if one of them needs a kidney he needs to be available for them.  You have to come to terms with your own feelings.  I too would not take a kidney from a friend or relative.  I would however BUY one.  Then I would not feel like I owed them for the rest of my life.  There would be compensation.
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cariad
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« Reply #2 on: August 29, 2009, 10:55:21 PM »

Those are certainly two thought-provoking conversations, Marc!

1. I agree with the store owner for the most part, however, I don't see the kidney patient as taking advantage of the cousin. I think they both used each other pretty horribly. Sad. Is this legal in India?

2. Tough conversation with your son. The risks are pretty minimal, but I am so with you when it comes to even thinking about letting a child of mine donate. I can see this from your son's side too, though. It is such an awful feeling to just have to sit there and watch someone go through this and to be told that you could have possibly helped, save for the fact that the help would not have been accepted. You seem like such a great dad, so I doubt you need any advice on this. I guess if I were in this situation (I'm not) I would force myself to not share any doubts you have about accepting a live donor until you have made your final decision. That sort of news from a parent would have truly stressed me out as a kid, and if you do end up accepting a donor, then the worry would be a waste of upset. It could be months or even years before you're in a position to say yes or no to a donor (waiting on the tests, and from what I was told in SF, hospitals will only take one live donor at a time because it is really expensive to do the work-ups, and they know you only need one). I hope your son is feeling better, and that he realizes that your decision comes from love.
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« Reply #3 on: August 29, 2009, 11:00:41 PM »

I don't know what I think of the India situation.  On one hand I can understand the urge to donate a kidney when it will financially set you up for life - don't forget $2500 US is a huge amount of money in India.
The second bit is difficult but really clear.  You must go with your heart on this one, as hard as it may be for your family.  There are lots of people who aren't happy with living donors - it's a completely valid opinion for you to have come to.  Your family will just have to accept that this is your decision and you have made it.  Stick to your guns.
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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.
Wallyz
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« Reply #4 on: August 29, 2009, 11:15:26 PM »

$2500 won't set you up for life in India.  However, it is illegal, and both the donor and the recipient can face jail time.

Quote
To stop illegal organ transplant, Indian Government has come up with a 1994 law that criminalizes organ sales. The Human Organs Transplant Act, 1994 has laid down certain rules and regulations that are to be followed while conducting organ transplant.

Organ transplant law does not allow exchange of money between the donor and the recipient. According to the Act, the unrelated donor has to file an affidavit in the court of a magistrate stating that the organ is being donated out of affection. After which the donor has to undergo number of tests before the actual transplant takes place. The Authorization Committee set up for the purpose ensures that all the documents required under the act have been supplied.

If it is found that the money has been exchanged in the process then both the recipient as well as the donor are considered as prime offenders under the law.

According to the Indian law, organ sales are banned and therefore no foreigner can get a local donor. Human organ transplant laws are very strict in India and the penalty incurred for organ trade is also very high.

According to the Indian Law, close relatives of recipient like parents, children, brothers, sisters, spouse can donate the organ without government clearance. But all other relatives who wish to donate the organ need to appear before the authorization committee for clearance and only after its approval and clearance can get the organ transplanted.



In the case of your son, he loves you, and wants to care for you.  He is trying to say how much he loves you.  Think about that carefully the next time you refuse him.  Can you do so in a way that feels like you are not refusing his love and causing him to believe that you are leaving him just as he enters adulthood?

I know you think you are protecting him, but are you sufficiently protecting him from losing his father early, or a feeling that he should have done more?

When my father needed a transplant, I already had diabetes, so I was ineligible for donation.  But Lord, how I wanted to donate.  He is doing fine now 14 years later after  a cadaver transplant and it is my turn to wait. I need  a cadaver transplant(I need a pancreas as well) and all my relative either have diabetes (my side) or have various stages of PKD (my wifes side) so I have not had to deal personally with this, and I respect your struggle.

I have worked with a number of donors who all say the same thing :The risks are worth it, because they love and care about the person they donated to.
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sico
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« Reply #5 on: August 30, 2009, 12:48:48 AM »

1) That donor got ripped off. A kidney is priceless, but i'm sure there's people out there that would pay a shitload more than that.

2) I can fully understand why you wouldn't think about receiving a kidney from your son. I'm in two minds about maybe getting one from my parents, even though i know they'd do anything for their kids like most parents. I just think of the future and it having an adverse effect on their health.
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Brad      "Got myself a one way ticket, going the wrong way" - Bon Scott

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8th of April 2010 Live kidney transplant from my father.
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« Reply #6 on: August 31, 2009, 05:14:50 PM »

On the second conversation;  my kids insisted on being tested. They are adults and can make that decision.   One son is a 5/6 antigen match.  I think I am glad the PRA problem was recognized and I didn't have to think about them donating.  I understand your son's feelings. He loves you and wants you around.  But, like you, I don't know if I want to put anyone in a harms way.  It is a constant battle in my mind. 
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kellyt
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« Reply #7 on: August 31, 2009, 05:48:47 PM »

This might work...

Allow your son to test, but talk to your transplant team privately and explain your feelings on his donation.  They can deny him on a "medical " (maybe say his protein is a little too high for donation, but that his health is otherwise excellent if that's the case) or "psychological" condition (stating they as professionals do not feel is a good candidate due to his age, emotional stake, etc.) and he will at least know he did everything he could by testing.

My first brother was "denied" due to a protein of 163 mcg when they said their cut off was 200 (recently changed to 200 from 150).  My donor, sis-in-law swears that her protein was between 150-200.  So my brother might have very well opted out.  I would never ask him, though.  His decision is his decision.  I love him for testing without question.  But he is a little freaky around doctors and hospitals.   :rofl;

Anyone testing can express to the transplant team that they want to opt out discreetly due to a change of mind/heart, fear, feelings of pressure, etc. and the team will provide that "medical" or "psychological" excuse for them.  Doctor/Patient Confidentiality is in full effect for them and the team doesn't have to give the recipient the reason why - actually they can't.  Maybe they would do that for you but in reverse?  You could always ask.  :)

As for the purchased kidney in India - I don't agree that in the entire process of organ donation it is the donor that is the ONLY person who receives no compensation.  It is my personal opinion that that is not cool.  However, $2500.00 sounds like a deal.  He should have held out for more.  :)
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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« Reply #8 on: August 31, 2009, 06:19:44 PM »


1. I don't know, seems like a bargain for a kidney.

2. If it were my son I would say that we could revisit the idea when he's 22 or so. You may have a different perspective by then, and so might he.
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« Reply #9 on: August 31, 2009, 06:40:43 PM »

1- Donor probably paid waaaaaaayyyyyyyyyy more then 2500, the cousin just got ripped off. And hello I win the Lottery Otto WILL be buying a kidney in South America.

2- Our son Bryce has said when he turn 18 he wants to give Otto a kidney and he has told him he needs to save his for his lil sister...............
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cariad
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« Reply #10 on: August 31, 2009, 06:54:30 PM »

I like Karol's idea. You would not even need to give a specific time frame, just say you are not saying no forever, just for now.

Some hospitals have used Kelly's idea, or something similar. A journal article co-authored by doctors from my transplant center discussed making up a medical excuse for donors or recipients in cases where the transplant team secretly felt the person was not a good candidate psychologically. It was chilling. I was happy that the article came down against this practice as unethical. Personally, I think it's better to be upfront with candidates. The truth has a way of coming out, and you risk a person feeling defective if they are rejected on any grounds. I think it is fine for potential donors to use a concocted medical excuse to back out, because that is their choice on how to handle it. They know it is a lie, so the risk of emotional damage to them is minimal.
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kellyt
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« Reply #11 on: August 31, 2009, 07:04:18 PM »

I agree Cariad.   :thumbup;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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Sunny

« Reply #12 on: August 31, 2009, 08:18:23 PM »

1. That kidney was worth more than $2500.
2. I have turned down my son's kidney donation offers. The first time he was 18, now he's 20, and I still would never take it. I love him too dearly to ever put him through it.
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Sunny, 49 year old female
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YLGuy
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« Reply #13 on: August 31, 2009, 11:02:11 PM »

Again, I believe I have received some excellent advice from this site.  I want to thank you all for your responses!  :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx; :thx;
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Jean
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« Reply #14 on: August 31, 2009, 11:49:57 PM »

First, $2500.00 is one heck of a low price for a kidney.
In regard to your kids donating to you, both of mine offered along with a niece and my husband. I just told them, thanks so very much, but I am too old to get a transplant. Worked for me.
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YLGuy
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« Reply #15 on: September 01, 2009, 06:02:57 PM »

Things are good with my son right now.  My first appointment, the orientation meeting, requires that I bring a family or friend support person.  My appointment is at 10:00 AM and it just so happens that my son gets out of classes that day at 9:00 AM.  He just started college, but the school is only 10 minutes away so he is living at home at least for the first semester.  I asked him if he would come with me and be my support person.  He agreed whole heartily.  I think it helped that I am making him part of this process.
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Des
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« Reply #16 on: September 02, 2009, 12:26:40 AM »

Cool!!!

Let us know what the outcome was... dying to hear!
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

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« Reply #17 on: September 02, 2009, 01:37:13 AM »

Just on the "Indian Kidney" part:

Lola has it right and you might want to update the clerk/owner if you see them again and it comes up. Just because the donor was paid $2500 it's more likely that the westerner (one presumes) that paid for it actually paid ~$100,000 with >95% going to the middlemen. This is one of the ethical/moral issues I have with this kind of transaction. Apart from it being illegal in most places, I would not want to use my relative wealth to take advantage of someone else's poverty and desperation. I feel nobody should HAVE to trade their health(as in a healthy organ) for money (obviously I realise stuff like this happens every day, but it makes me very sad). I've often had people ask me if I'd fly to India/China/Phillipines/wherever to buy a kidney and the answer is NO.

The only way I would even REMOTELY consider such a deal was if it was someone I knew personally and who wanted to donate to *me* and the arrangement was such that I was certain the donor was getting totally fair compensation. Even then I would feel very weird about it.

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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!
Des
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« Reply #18 on: September 03, 2009, 06:31:51 AM »

When is your orientation appointment.?

Just checking in. 
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
YLGuy
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« Reply #19 on: September 03, 2009, 10:21:54 AM »

Tuesday 08SEP09
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Bajanne
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« Reply #20 on: September 03, 2009, 10:55:09 AM »

About number two - I have told my daughter I would never want a kidney from her.  My dad passed from kidney failure; my brother died after 10 years on dialysis, and here I am.  No donation from her.

About number one - I agree with the others who think that the patient must have paid much more than 10 times what the donor received.
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« Reply #21 on: November 12, 2009, 11:20:15 AM »

Selling organs is illegal and I would worry if all the right tests were being done to make sure this kidney would be compatible.  Where is the transplant preformed anyway??? It would have to be a disreputable hospital..... too risky.

Accepting an organ donors offer is a personal decision. If you feel uncomfortable about it getting on waiting lists would be another option. Some people get the call right away and others have to wait years.
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kellyt
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« Reply #22 on: November 12, 2009, 01:37:40 PM »

Having your son be "apart of the process" is great!  Just as good as testing in my opinion!  I hope your appointment goes/went well!   :beer1;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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