HELP! Transplant question

[jadey]

I've recently made a post on livingdonorsonline forum and had a couple of people emailing me about donating their kidneys.

However, some of them are really sketchy. Most of them ask for money. They are all from foreign countries (India, Malaysia) however I had one from the US.

One guy from Malaysia seems like he does not want money in return. I will just need to fly him to Canada. Does anyone know if I am allowed to have donors from overseas? And if so, how can I proceed without getting scammed or screwed over?

Janet


Edited: Moved to proper section - okarol/admin

[willowtreewren]

Janet, I would be wary of someone who "only" wants you to fly him to Canada. I asked our transplant center about these offers and they flat out said that they did not take donors from outside the US (are you in Canada?).

Okarol is an administrator at livingdonors, too. I'm sure she can give you better information.

Aleta

[jadey]

Yes I am living in Canada.

I will be really frustrated if the issue is because Canada does not take donors from outside! What if I had a relative living in China or something that would love to donate? That is just ridiculous. I am calling my transplant coordinator tomorrow to find out.

My nephrologist kept telling me to be "pro active" to find a donor. Well here I am being "pro active". So here I found a couple and it would suck if they get rejected because of location.

[cariad]

I will be really frustrated if the issue is because Canada does not take donors from outside! What if I had a relative living in China or something that would love to donate? That is just ridiculous. I am calling my transplant coordinator tomorrow to find out.

Hun, I hear your frustration, but I think they are right to refuse donors from outside of the country. I am fairly certain that they would accept a relative from another country, or even a close friend, but you DO NOT want to fly some stranger over from Malaysia. Firstly, do you even share the same blood type? Secondly, this sounds to me like someone who wants out of Malaysia, and a free, one-way ticket to Canada would give them a good start. That person has no intention of donating to you, you do realise that, right? Even if they did, a plane ticket is a form of payment and therefore would qualify as coercion.

Karol found a donor for her daughter off of livingdonorsonline and you can read Jenna's story in the transplant section. There was even an article in the LA Times - she had to weed out the crazies and users, too. I believe you could find a donor through this route, but it will take some patience and realistic expectations. Additionally, read LarryG's story about finding a donor through Craigslist. That is another possibility to explore. Canada should have no problem with a US donor, so perhaps that person will come through.

I think you can do this, but if you do not want to be scammed, try not to fault the transplant hospital for refusing to even consider the scammers.

[jadey]

Well the goal is to find out what his intentions are, which I am trying to do, and also if it is possible to fly him out here in a way that I will not get scammed. I was given an info package on the living donor reimbursement program--anyone is eligible even outside of Canada. This is implying that donors can come from anywhere in the world. They just need to pass the tests and whatever protocols there are here.

I want to make sure that this person is real, genuine, and not some crazy terrorist. I don't want to label someone as a scammer before even talking to them. I want to give this person a benefit of a doubt.

Of course if the hospital thinks its a scammer I will not fault them. They will need to give me some good reasons and the reason of "we just don't do transplants from outside Canada" is not enough for me. I'm talking about two different issues here... not taking donors internationally vs not taking donors internationally because it's a scam. If the issue is the latter then yes I understand.

The problem with the US donor is that he is asking for a "gift" of a certain x amount of money after the donation.

[jadey]

well I called my transplant nurse and she told me the rules here is that I must physically KNOW my donor for a minimum of 2 years.... This is so limiting. My plans of searching online has been completely crumbled

[Razman]

  I understand your feelings  ( not really )  but I know that the governments want to be as careful as possible and if they allow non related people come from other countries it could open an underground program where people are getting paid and I am sure you have heard about the replacement programs in China  etc.    I know you don't want to wait but  there is no way to even see if the person could be a matching donor without tests etc .    I would be very careful about giving money to people you don't know. 

[cariad]

well I called my transplant nurse and she told me the rules here is that I must physically KNOW my donor for a minimum of 2 years.... This is so limiting. My plans of searching online has been completely crumbled

I'm not sure how they would expect you to prove this. I could swear that I read of people in Canada who were going to be altruistic donors through livingdonorsonline, so could it be just your particular transplant hospital? I can promise you that you are missing nothing by not pursuing the Malaysian. There was no way to fly him in and then proceed to make him undergo tests to donate to you, and even if he did undergo a few tests, they do not perform these surgeries at gunpoint, he would have every right to accept your plane ticket and disappear. The hospital does this day in and day out, I'm sure they've created some of these rules after seeing patients taken in by these scammers. However, if you find another Canadian willing to donate, I think you would have a real case to argue. If this is what you want, you may have to be willing to fight for it, but first I would highly recommend reading about the others who have done this successfully before you.

The US person, please forward his email to the FBI. He is committing a crime and should be arrested.

[monrein]

Canada doesn't have a problem with bona fide altruistic donors from anywhere.  My sister-in-law from Florida was brought here to donate a kidney to me.  Most costs are covered although I'm sure not every penny.   I also know of people from various countries whose relatives have donated.  The issue becomes one of legitimacy of the relationship and of no coercion through money or other pressure and also one of immigration.  I do know someone whose relative (a very distant cousin) from Sri Lanka was denied permission due to dodgy issues about potential refugee claim and family pressures.  There was suspicion that money was involved since the patient had a wife and 2 grown kids who were acceptable donors but he didn't want a kidney from his immediate family and he had not had contact with this "cousin" since childhood.

Our system pays for all the testing etc and I do believe that we have to do our level best to ensure that our money is well spent and that the out come for you will be as good as possible.  I hope you will find a donor and that you will eventually get a successful transplant.
 

[Riki]

well I called my transplant nurse and she told me the rules here is that I must physically KNOW my donor for a minimum of 2 years.... This is so limiting. My plans of searching online has been completely crumbled

That can be fought.  It has been fought in Canada before, and won.  Barich Tagegne, he helped smuggle Ethiopian Jews into Israel in the 60s, I think.  He was considered a hero around the world for this.  He was living in Montreal, and I think someone from Israel was willing to donate, but the hospital in Montreal refused to do the transplant because they weren't related.  Look him up, the whole story is online.

Another thing you could do is register with the Paired Donor Exchange Program.  If you have someone who's willing to donate, but isn't a match to you, you can register together and they'll match you up to another pair.  My mother and I are planning on registering, but she was told she needs to lose some weight first

[jadey]

I really appreciate everyone's support on here.

I've given up on the Malaysian guy.

But last night I got an email from a woman living in the US who seemed very genuine in donating. She had been thinking about organ donation for a long time now and saw my post on LDO

We had a long chat and she told me her reasons for wanting to donate an organ. She is willing to travel and very keen to learn more about me. She told me that she is ready to get tested whenever.

Now the problem is... do I lie to the transplant center and say that I've known this person for at least 2 years online? I mean.. I have many online friends anyway. Online friends count as friends too or no? I honestly don't know how they can measure "how much you know" a person.

Or I tell the truth and try to fight my way through the rules in the book?

This is such a hard decision. Why not let someone who genuinely wants to donate...donate?

[Ang]

just my  tell the truth and see what happens.

tell a fib and it will most likely come back and bite real hard

cheers

[okarol]

Many dialysis patients are isolated and the internet becomes their community. I cannot believe they still require you to know each other. That practice was hanging on until about 5 years ago at our transplant hospital.

[RichardMEL]

Jadey, we have a similar rule here in Australia. It is there to protect against scams and thiose just out to sell their organs.

re the Malaysian "just" wanting to be flown there.. I would think the "catch" may be that he would want to gain access to Canada somehow, as in citizenship or right to stay (a resident permit? whatever it is). As we know conditions in other parts of the world are far from easy and that could be an end goal for him.

The thing is to trust your own gut instincts - you said yourself many "offers" were sketchy or wanting $$$$ and you need to listen to yourself with those misgivings. Often concerns like that are well founded. And with something so critical tol you as transplant and your body/life to not make any decisions lightly (which it doesn't seem like you are).

Whatever you do I definitely suggest you always be honest. It's not worth it otherwise. One slip up and you may be "marked" in some ways which may impact on future chances at transplant etc. If it was me I would be up front. After all you wouldn't be the first or the last person in Canada to be seeking the same thing.

My other thought is do be wary of kidney tourism. I know you hadn't mentioned going overseas to get a kidney - eg to china, phillipines, India etc, but you risk so much going to a country like that in terms of medical care, the surgery etc and of course the fact that the actual donor often sees only a very minor percentage of the cost to you and the fat cat middlemen get all the $$$.. and your own country (eg: Canada) may not be too happy to support post-tx complications. You didn't say you were looking into this of course, but I thought I'd mention it anyway. Many people do.

Incidently I serem to recall a case here of a woman here in Australia who wanted to do an altruistic donation (which we do not really support here per the 2 year rule) and she actually flew to Toronto to donate - so clearly that does happen.

All the very best with your search!!

[okarol]

Being a moderator on Living Donors Online has given me insight that I never had before. You'd think the worse thing is having people sell their organs, but it does not happen often, transplant teams are very good at ferreting out this transaction. The thing I have noticed more often is a reluctant family member being nudged and prodded to give a kidney to a sibling or parent or cousin. They come to the forum looking for answers and the guilt/pressure they feel is huge! It seems so unfair. Living donation is not for everyone. The donor has to offer, of their own free will, without feeling as if their letting down everyone if they can't or won't donate.
The type of person who offers to undergo surgery and recovery to donate a kidney to a stranger is an amazing soul. I don't think hospitals realize how many honestly good people there are in the world, who really want to help, with no expectation of reward or compensation.

[jadey]

My only concern with telling the truth is that they will eventually tell me no and that is final. Rules are rules. I really hate it when people live by the book.

And then I will definitely take the steps to fight my case at every level of administration until I hit the prime minister or something. Then the issue becomes... will my transplant team be offended? My life is in their hands. They can easily "make mistakes" in my surgery. Maybe I'm thinking way too much about this.

[RichardMEL]

Jadey here's my reaction to what you wrote.

There's nothing wrong with fighting your way through the system to try and get what works for you - but if you start with a lie as a basis, you'll probably regret it at some point. If you're open and honest throughout one would hope that common sense would prevail. As karol said, tx teams are used to ferreting out the scammers and people who after something for themselves.

Of course that whole argument is based on the fact that you can find someone online that you are comfortable enough to trust will go through with it and start on the process.

I suppose many would say that saying you've known someone for a few years online (when you haven't) is a white lie, but the rules are in place for good reasons and as much as they may frustrate legitimately honest and altruistic people, they are also there to protect those f us seeking organs in such a situation where you can be vulnerable to being taken advantage of.

This is not an easy situation for you to face I can but imagine (since we don't even really allow altruistic donors at all here un;less they are well known - the most famous instance of this was a media tycoon's helecopter pilot who donated to him - but clearly the two knew eachother for years).

If it was me, at the end of the day, I would want to do everything within the system and whatever happens at least know that I had a clear conscience about it. Everyone's different though and I guess you need to find the balance that works for you.

[cariad]

Jadey, normally I would say just lie because I'm like that and resent doctors applying arbitrary rules to my life, but in this case I think I would take the advice of the others. The primary problem is that you will have to trust the other person to join you in the lie, and if she's not too good at that sort of thing, they will see you both coming a mile on. Then there could be any number of repercussions, including damage to your reputation.

If, however, you find someone keen enough to donate (and you'll have to use your best judgement there) they could become a wonderful ally to you as you start the battle. Just be careful, because I think you will likely only be taken seriously once, and if a donor bails out on you at the last minute (which seems to happen to a disturbingly large number of people with these altruistic donors) then it is you that will be left to face the doctors who I am going to bet will be ready with an 'I told you so.' I really hope this works out for you. Please keep updating and if you're unsure of a person, maybe we can help interpret words and actions to give you the best chance of success on the first go.

[jadey]

At first I was thinking of lieing but now reading all your responses, I feel that it might be best that I just tell the truth. I personally hate lieing, and it gets worse when I need to reply on others to lie with me.

I do want to share with you all why I believe this person is genuine though. She has given me a really good reason for why she wants to donate, however, the details are quite personal and I don't feel comfortable sharing that information unless I am permitted to. I had a long chat with her and the gist of what she told me is that.. due to personal experiences with her own family, she doesn't want to "see another person go through life without having to live life". She also stated that she has family, good health. She sees that to her, its a surgery and a few weeks of pain while to me it would mean a lot more.

We added each other on facebook (lol I know I keep bringing facebook up in my topics) and I can tell that she is a real person, with real family, friends and experiences.

I will also not be at loss for anything because she told me that she is able to take care of all transportation expenses and all that.

Based on my chat with her and her facebook profile, I can tell tha she is real and she is genuine on her intentions.

[ToddB0130]

jadey --- perhaps since you've now started a real dialogue with this woman,  by NOT rushing into the whole process of initiating her as a potential donor,  it will end up that there will be real truth to your relationship and you won't have to 'lie'.  Not sure of where things stand with regards to your present health, whether you're on dialysis already, etc .........but giving both of you some time to continue developing a true relationship, etc would make this less of an 'unknown' altruistic donor situation all around (for both of you, as well as your transplant team).  However you pursue it,  best of luck !!

[RichardMEL]

Jadey, when you say you've chatted with her do you mean online, or actually on the phone?

[jadey]

I chatted with her online. Although I also have the option of chatting with her on the phone because she gave me her number and told me that the doctors can give her a call anytime if they are suspicious

[RichardMEL]

That's good to know. I think if someone's willing to give a number and be contactable that's a good sign. I guess also if I were in your situation I'd want to have some long convos on the phone - you can hear so much in a person's voice - to help settle your own thoughts as to how legitimate and/or serious she would be,

[jadey]

I normally don't talk on the phone with people I'm not close to, without a purpose. There's just that awkwardness there when trying to look for things to talk about...if you know what I mean. I think I will eventually talk to her on the phone though.. and maybe get my dad to speak with her too. That way, she can have a better idea of who her potential recipient is

I'm planning to meet with the transplant coordinator sometime this week...in person. I feel that I get rejected less when I talk to someone face to face  in the mean time, I'm building up a strong case so that she won't shut me down right away

[okarol]

My daughter's donor was someone we met online (LDO.) We emailed back and forth a bit, but I asked her to contact the transplant team directly to begin an evaluation. It really is not necessary to get too involved because, as I am sure you know, the person might not even match and you've invested your hopes in them, so let the transplant team at least begin the process. At the hospitals around here they do not discuss any pending donors with the recipient under any circumstances, and it's the living donor coordinator who works with them, not your coordinator, so it's very separate. It's all very confidential and it's not up to you to introduce the donor to the team, it's their job to contact them and ask to get involved. This is one of the ways the team measures the commitment of the potential donor.