I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: jadey on December 28, 2011, 04:25:48 PM
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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
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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
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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.
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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.
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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.
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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
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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.
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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.
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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.
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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
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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?
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just my :twocents; tell the truth and see what happens.
tell a fib and it will most likely come back and bite real hard
cheers :thumbup;
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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.
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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!!
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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.
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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.
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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.
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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.
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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.
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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 !!
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Jadey, when you say you've chatted with her do you mean online, or actually on the phone?
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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
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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,
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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 :rofl; in the mean time, I'm building up a strong case so that she won't shut me down right away
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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.
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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.
I was planning to talk to the living donor coordinator about my case because I don't want my potential donor to contact her and get rejected right away (like what happened to the Malaysian guy). So I will give her the background story behind it and give her a heads up and that if this person calls, please don't tell her "no we won't test you" and give her a chance to explain herself....
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Karol, that's a great point - I totally ignored that aspect of it. They are like that here in terms that donors do their own thing with the team rather than the potential recipient (this happened with my brother and sister) and they also do the psych test etc if it gets that far, so yes I support that notion to give the TC's number to the potential donor.... but I also see Jadey's point about wanting to clarify with the TC first that it would be OK to at least talk and guage what the situation might be. I think that would be a reasonable course of action.
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I am so upset!!!!!!
I just had the talk with the transplant coordinator and basically the answer is "no. rules are rules."
These are the OFFICIAL STRICT rules for living donors:
1. must know recipient for a minimum of 2 years
2. MUST have some sort of emotional attachment to recipient so if you are a friend..you can't just be a friend.. you gotta be a BESTfriend (p*ck MY LIFE)
I brought up how there were so many cases in the US where living donors didn't really know their recipients.. and the nurse told me.. "THIS IS CANADA VS the US. THEY HAVE TO PAY FOR THEIR HEALTHCARE"
I hate my transplant centre so much. They are the rudest and most inconsiderate bunch. I can't move because there is only one in my province. It's like no one wants me to live.
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OH AND..the transplant coordinator said these rules are set by our GOVERNMENT!!
OMG
So I just called a different transplant centre..ALSO here in Canada... but in a difference province. They told me theres no such rules and nothing like that is set by Health Canada. They suspect that those rules are only specific to the kidney program in my city..
SO that means my transplant coordinator was just pulling shit and lies out of his ass. Now I know how dark and cruel my centre is.
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OH AND THE TRANSPLANT COORDINATOR SAID I WAS SOLICITING! why? because I went online trying to look for a donor. That is apparently soliciting.
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Contact the fellow I told you about. He knows his stuff. The coordinator is just trying to cover his/her ass in case something illegal should come about from it.
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I'm so glad that Riki has an option for you. I would go above the coordinator's head if possible.
I brought up how there were so many cases in the US where living donors didn't really know their recipients.. and the nurse told me.. "THIS IS CANADA VS the US. THEY HAVE TO PAY FOR THEIR HEALTHCARE"
You pay for your healthcare, too. It's called TAX. And right now everyone is paying for your dialysis, so what they really seem to not want is for you to get off dialysis and save the country loads of dosh.
Rich people in this country often get their healthcare for free - top level jobs almost always come with health premiums paid by the company. The middle class sometimes gets this benefit and sometimes not (less and less as of late) and the working class, forget it. They pay a fortune IF they are even allowed to purchase it. So, yes many of us pay for our healthcare but far from all. Apparently, living donation is not the only topic that this man has totally WRONG. I'd love to hear him explain the solicitation charge. That sort of accusation could land you in court in this country, but then we're known for being litigious. ;D
Sorry this twit seems determined to stand in your way. Please follow up with Riki's contact and let us know if anything comes of it. :grouphug;
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Riki, I'm thinking of going that route now. At first I wanted to try to talk to the transplant centre myself and see if I can get some sort of understanding..looks like no one wants to listen to me.
This tx coordinator... I think he took my questions personally or something because he started arguing with me at a personal level. Keep in mind I've never met this guy in person before. This is the first convo I've ever had with him.
First he judged me. He said:
"Don't go online for a donor. That is not the right way. Go ask family and friends. You know what? I don't even think you have made that step. I don't even think your family knows whats going on"
k WTF! What does he know about me to say that I never told my family????
Second he said:
"You know what you are doing is soliciting..going online and asking for donors. Those who want money will come to you.. and if you talk to them then you are soliciting."
I think he has issues....
And then he told me that my potential donor can go donate if she wants to..she can register herself through the donor program and donate to someone randomly. I was like..if she can donate to a random person..why not me? She knows my story and she wants to help ME.
His answer? "Look there is a lot of biology behind it. There is a DNA test where the donor program will find the best match"
OKAY..his first statement is not valid as an argument to what I asked. I am also offended that he mentioned that as if I don't know my biology and the process of donating. He has NO valid comebacks.
Then I said "oh yea I know. The DNA test..where you have 6 tissue types and you gotta match..the more matches the better"
And then he responded: "It seems to me that you have been doing a lot of reading... look there is no point in you talking about this right now. We are talking in circles. The answer will always be no"
To me, it is no longer about the rules of the hospital but his attitude towards me..towards my persistence in QUESTIONING.
OH you guys want to hear another piece of rule that is added to the picture? They don't allow boyfriend/girlfriend to donate because they are worried of break ups in the future and problems arising from that.
This is more of a rant if anything... I needed to get this out.
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Riki, I'm thinking of going that route now. At first I wanted to try to talk to the transplant centre myself and see if I can get some sort of understanding..looks like no one wants to listen to me.
This tx coordinator... I think he took my questions personally or something because he started arguing with me at a personal level. Keep in mind I've never met this guy in person before. This is the first convo I've ever had with him.
First he judged me. He said:
"Don't go online for a donor. That is not the right way. Go ask family and friends. You know what? I don't even think you have made that step. I don't even think your family knows whats going on"
k WTF! What does he know about me to say that I never told my family????
Second he said:
"You know what you are doing is soliciting..going online and asking for donors. Those who want money will come to you.. and if you talk to them then you are soliciting."
I think he has issues....
And then he told me that my potential donor can go donate if she wants to..she can register herself through the donor program and donate to someone randomly. I was like..if she can donate to a random person..why not me? She knows my story and she wants to help ME.
His answer? "Look there is a lot of biology behind it. There is a DNA test where the donor program will find the best match"
OKAY..his first statement is not valid as an argument to what I asked. I am also offended that he mentioned that as if I don't know my biology and the process of donating. He has NO valid comebacks.
Then I said "oh yea I know. The DNA test..where you have 6 tissue types and you gotta match..the more matches the better"
And then he responded: "It seems to me that you have been doing a lot of reading... look there is no point in you talking about this right now. We are talking in circles. The answer will always be no"
To me, it is no longer about the rules of the hospital but his attitude towards me..towards my persistence in QUESTIONING.
OH you guys want to hear another piece of rule that is added to the picture? They don't allow boyfriend/girlfriend to donate because they are worried of break ups in the future and problems arising from that.
This is more of a rant if anything... I needed to get this out.
OMG...I can even express right now how much your situation upsets me! :banghead; How dare he make assumptions like that. Its already stressful enough having to fight for your life everyday, but then to go through all that bureaucratic BS is just rediculous. There are so many people out there that are genuine and just truly want to help, even a stranger. To think they take such a negative stance, and that their unwillingness to budge could be costing lives is unfathomable to me.
I guess it bothers me so much because the first Transplant center I dealt with was like this. It was all politics and their attitude was like they had no obligation to help and we have to "prove our worthiness" of a transplant to them. They caused me such needless stress I nearly said F* it. I have excellent health insurance coverage from my employer and they wouldnt even evaluate me until I raised upwards of $10,000 and proved to them I had that money. It was crazy. Plus I had a potential living donors that called for over a month and never got any calls back from these people. I later found that they arent my only option and went to another center that is amazing although they are pretty far away.
I really hope it works out for you, and if you have to, it may even be worth it to travel to another center.
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OH AND THE TRANSPLANT COORDINATOR SAID I WAS SOLICITING! why? because I went online trying to look for a donor. That is apparently soliciting.
It's only soliciting if you're offering to pay someone, and you're not. The guy is full of crap
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Riki, I'm thinking of going that route now. At first I wanted to try to talk to the transplant centre myself and see if I can get some sort of understanding..looks like no one wants to listen to me.
Ok. I gave him a heads up about you, and told him your username on this site. Fighting for people who are trying to get live donor transplants is one of the things he does. He's fought successfully for himself, and for others.
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WOW Jadey.. Just.. WOW!
You tried to do the right thing and got that attitude? I'm quite shocked.
A few thoughts from the past few posts.
1. Seems he is contradicting himself a bit - he says you need to have friends, but they have to be "best friends" or whatever to donate, yet a partner (bf/gf) can't? And if they are so worried about relationship breakups how is a wife/husband any "better" in terms of that? marriages (sadly) break up all the time. It may not be as "easy" as dumping a bf, but really?!
2. I get the impression that either this guy, or the tx unit, has been hit badly by a scam or that someone has used their system and paid for a kidney (hence the solicitation thing). Clearly something has happened to make them very wary.
3. Re the rules and you talking to the tx unit in another provence... could the provincial govt in yours have any say? I do not know about Canada, but here sometimes state govt. policies can change things... though I think we are federal when it comes to tx.
4. with him telling you that your donor can sign up to give randomly is just another way of saying "we don't support directed donation" for fear of the issue of money changing hands etc.
I wonder if it wouldn't be worth trying to go above the tc - to the head of the unit or something? Just query your experience talking with this guy and the negative impression you had - specially the suggestion that you were soliciting etc? I am not saying you will get further joy but you may get an idea if the TC is doing his own thing a bit, or there is support from the unit.
Also are there other hospitals/units in your city area you could try? Alternatively can you register in the other provence?
I'm sorry you've had this fruatrating experience (and also fear that your name will now be firmly remembered by this TC in particular so you will be under extra scrutiny from him from now on I bet.. :( ).
I hope Riki's advocate can help !!!!
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Richard..
After I deal with my own case, I'm going to eventually file a complaint about this tx coordinator. His professionalism was basically zero. His lack of compassion disgusts me.
1. I think he is really trying to mess with me. First he said you gotta know your donor for at least 2 years. So then I asked "what if I become friends with people online" THEN he added "in that case it's gotta be MANY more years
He said that husband/wife donations are done BUT they grill them so hard with questions regarding divorce in order to find something wrong with the relationship..if they can't then they do the transplant.
2. I haven't asked about this... maybe they have
3. I have emailed the health minister of my province to see if there is such a rule. I know this is definitely not under federal rule..which is why other provinces do things much more differently.
4. Yes one of their reasons is the fear of exchanging for money.
When the conversation was about to end, he told me that he will bring it up with the nephrologist..who is the head of the team. He also ensured me that the nephrologist will just agree with everything he said and he will call me back tomorrow to tell me the final answer is no..
My next steps are to 1. find out if there is provincial jurisdiction on this. 2. if there is, then I will talk to whoever it is that is in charge of the rules and regulations.. hopefully getting them to make an exception or change the rules totally.
Can you believe that there is only ONE transplant centre in my entire province? And yes I can move to a different centre to get my transplant if I wanted to and if I am capable of doing so
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Riki, I'm thinking of going that route now. At first I wanted to try to talk to the transplant centre myself and see if I can get some sort of understanding..looks like no one wants to listen to me.
Ok. I gave him a heads up about you, and told him your username on this site. Fighting for people who are trying to get live donor transplants is one of the things he does. He's fought successfully for himself, and for others.
Oh Riki!! You didn't have to! :thx;
Thanks a lot though :)
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Seems that mr TC really doesn't have any respect for online fridnships. Wow, this forum better shut down right now!!! :rofl;
Only in some ways can I begin to understand and agree with their caution. Absolutely there are people out there, on both sides of the transplant "fence" ie: donors and recipients looking to gain - either a kidney or $$$$ - and this should not be allowed. Also it is much easier to "fool" people online with scams, people misrepresenting themselves, and so on.. but it sounds like there's a real dmisssal there that "oh you know someone online.. well that doesn't count" - is a bit insulting. Half my IHD mates I've known for years online and only some of which I've been able to meet recently in Vegas. I don't think people like Paris, karol, KarenInWA, AB, kitkatz, rerun, Cariad etc etc are not real people or weren't real friends... and also I wonder if Mr TC would say that they were "real" friends now that I met them in vegas? True, I aren't trying to get a kidney from them and only married one of them for 12 hours ( :rofl;) but I think there's some real bias going on there for whatever reasons.
You're feisty though and fighting!!! Best of luck!
oh by the way I think it sucks TC will call you and tell you the result - that implies you're not allowed to talk to the neph yourself which seems wrong somehow.....
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Hey I actually requested that I talk to the nephrologist myself.. so then hes like "ok fine I will ask him if he has time to meet with you" I don't trust this TC to relay my story. He is biased and make me sound like the bad guy here..
Anyway.. if I work my way up and there is no budge.. I'm taking this to the media. I will keep you guys posted on any news articles or video clips. :rofl;
and you are right. The general notion with my hospital is that online friends are not real friends. With strict rules like this..they are shorting many people of kidneys.
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Every center makes their own rules. Jenna's first transplant hospital clearly stated "We will not allow donations from strangers. They never pan out and we do not have the staff available to waste on these individuals." We appealed to the head of the department who backed up the policy. We asked for it in writing and were told it did not exist in writing.
So we multi-listed, and when at the 2nd hospital, they said they would look at donors on a case by case basis. Jenna liked their open and supportive demeanor and switched her primary wait time there. Two strangers were evaluated and one of those gave her a kidney.
The first hospital now (5 years later) accepts strangers, but they drag their feet so long most recipients get frustrated and donors struggle with their slow progress.
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The whole thing sounds so stupid to me. Times are changing, and people do meet online now. The little circle of friends that I hang out with now, I met them all online through message boards. I went to the wedding of one of them about a month ago.
My best friend, I met online, in a chat room in 2007. She lives in NYC, I live on PEI. I've traveled there 4 times specifically to see her.
There are a handful of people on this site that I have as facebook friends as well. I'm a hardcore commenter.. *LOL* plus I compete against at least one of them on Bejeweled Blitz
Just because they are people we've met online does not mean they are people we get to know quite well. Transplant centres really need to take that into account too
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Hey this is a general question for anyone here experienced with transplant. My centre here tells me it is a MINIMUM of 9 months to work up a donor (all the testing) does it HONESTLY take that long??????????
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I've never gone the live donor route, but I know it's not quick, as any and all possible complications have to be ruled out
Someone with more knowledge on the subject (and there are many around here.. *G*) would know more on it than I do
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Holey moley ! That's a great question. Crimoney, it 9 mos. is accurate, you'll have practically been friends with your potential donor for two years anyway, jadey !!! Gosh.
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I can answer that! My donor first contacted me in June about wanting to donate to me. I believe her first appt with the team was in July. She then had to do a LOT of tests (and, the fact that she is 67, it was more than a younger person, of course) and she was finally approved in October. We then scheduled surgery for November 23rd.
They were first telling my donor that the whole process would take 6-12 months (with the end result being surgery). As you can see, it actually took shorter then that. They don't always know what they're talking about, even within their own program.
Hope that helps!
KarenInWA
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That's great to hear Karen! :clap;
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karol - sadly it seems Jadey has only the one option in her province which is sad. Where are you anyway Jadey? must be a small/isolated kind of spot? (no offence intended!)
I do get the general "we don't trust strangers thingg" - the natural (cynical) response is (and honestly, I am a bit that way myself) "Well they don't know you so what's in it for them?" and let's face it, human nature being what it is, many WILL try and take that and make something of it (eg: money). However ALL of us from Karol on down know of pure examples of altruism, and to ignore that (in the case of Jenna's first tx hosp, and Jadey's) seems shortsighted in the extreme. In a situation where you have a massive demand and short supply isn't it "worth" at least investigating on an individual case basis rather than flat out say no?? I mean I hardly think there's so many offers of kidneys, legitimate or otherwise, flying around that it would reallt "waste" people's times.
btw Jadey earlier you mentioned how the TC said they "grill" couples for signs of problems etc - that's a pretty simplistic and agressive description of the "psych test" compoent of a workup. From what you've said this guy seems to be "dumbing it down" which is a bit condescending.. and then when you show you understand about HLA matching giving you the "oh you've been reading up" deal but sounds again, condescending.. like oh you may have read some stuff online but you don't REALLY know what you're talking about. ugh. nasty piece of work.
as for tx workups - yes they can take time. At my unit 6 months was the stated time, but the TC also said at a forum I went to that the 6 months was quite on purpose - because while some of the tests took time to do, and stuff like that, they wanted to actually have a process that took somemonths to ascertain how serious a potential donor was - giving them time to get used to the idea, to go through tests, to help THEM decide if this is really what they want. I mean I am sure you could push through all the tests in a month or so, but I think they do like to push it out a bit both for the donors ability to attend heavy tests, recover etc but also to emotionally digest just what this all means and reaffirm (or otherwise) their choice.
Just my 2 cents.
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There are a handful of people on this site that I have as facebook friends as well. I'm a hardcore commenter.. *LOL* plus I compete against at least one of them on Bejeweled Blitz
Do you ever win?
>:D
Hey this is a general question for anyone here experienced with transplant. My centre here tells me it is a MINIMUM of 9 months to work up a donor (all the testing) does it HONESTLY take that long??????????
It can do, but here it's supposed to take a maximum of three months depending on your work schedule and other things. It took eleven months for me to get approved, but that was only because they spread my testing out as I needed to lose x amount of weight before I could donate (but they were happy to test whilst I continued to lose, which I know in some places wouldn't have happened.) Once it's all approved they can usually schedule surgery quite quickly (although we scheduled it for three months from approval because it fitted in with other things that were going on.)
He said that husband/wife donations are done BUT they grill them so hard with questions regarding divorce in order to find something wrong with the relationship..if they can't then they do the transplant.
Gosh. Grilled? I wasn't 'grilled'. I did have to meet with a counselor for about thirty minutes, but she was more interested in whether or not my family were aware of what I was doing and whether they were supportive of it. She didn't specifically question my relationship with Blokey, except to ask why I wanted to donate and how he felt about me wanting to donate.
Of course, I'm in England so things may be a little different here with regards living donation.
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There are a handful of people on this site that I have as facebook friends as well. I'm a hardcore commenter.. *LOL* plus I compete against at least one of them on Bejeweled Blitz
Do you ever win?
>:D
No. You, my aunt and my uncle are always the top 3. *L*
Hey this is a general question for anyone here experienced with transplant. My centre here tells me it is a MINIMUM of 9 months to work up a donor (all the testing) does it HONESTLY take that long??????????
It can do, but here it's supposed to take a maximum of three months depending on your work schedule and other things. It took eleven months for me to get approved, but that was only because they spread my testing out as I needed to lose x amount of weight before I could donate (but they were happy to test whilst I continued to lose, which I know in some places wouldn't have happened.) Once it's all approved they can usually schedule surgery quite quickly (although we scheduled it for three months from approval because it fitted in with other things that were going on.)
My mom was told that she needed to lose weight before she could be tested, but she was planning on donating through the Paired Donor Exchange Program. As it is, I don't see any testing being done for at least another year.
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Richard, I am from Winnipeg, Manitoba. It is not isolated..we just really suck. Can't wait to move out of this city.
And yes! The guy was totally condescending. I still can't get over how he assumed that I wouldn't know the "biology behind it"...I should have broke it to him that I'm a microbiologist and that the only biology course he has probably ever taken is the first year introductory course as a requirement for his nursing degree.
Basically here at my centre, they have rules and they are stupid. I want to change them and I will. But another part of me is telling me to fly to the other province where the hospitals and doctors are WAYYY better than here. Maybe I will do both. I don't ever want any future CKD patients deal with these bullshit rules.
Oh and thank you everyone for the answers about tx work up times!
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Jenna's donor had been approved to donate to a guy in Pennsylvania, but that fell through due to a last minute positive crossmatch (he'd gotten a transfusion that messed up everything.) So since she had already been previously approved, our hospital in Calif. looked at the first hospitals results, had her come for 3 days of testing, and about 7 weeks later she donated her kidney to Jenna!
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yeah wow Winnipeg is not a tiny place at all.. true Manitoba is not the most massive of provinces population wise but I'm surprised there's only one tx centre you can deal with.. and that's sad to treat you like that.
On a side note I'll always remember my one and only interaction with the great city of Winnipeg: I flew through there on my way to Saskatoon (now THAT's a tiny place! :) ) to visit a friend. Anyway I flew in from Chicago and as WYG was the first port of call in Canada I had to deal with customs, immigration etc. That's all fine and good, done that heaps of times with Canada, and as an Australian we're pretty much no issue with Canada. So anyway I arrive there, do the usual stuff... I get through immigration with barely a nod, but then customs direct me to a special sealed off area where I had to wait. I was thinking "WTF?" is this like random search or something? Didn't worry me, other than my connecting flight, but it was unusual in the max (but then again this was 2002, so after 9/11). Anyway I'm waiting in this "peantly box" for maybe 10 minutes, and nobody comes near me. I'm thinking "ooookay wtf?" till finally a customs person appears and asks me what I'm doing there. I kind of said well I was directed there and honestly I'm not sure. So he takes one look at my passport and exclaims "Oh! You're Australian!!! We thought you were from South Africa and might have Foot and Mouth disease. You're fine to go!" !!!
I made my connection ok.
:rofl;
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Some more dirty news,
Mr asshole transplant coordinator called back today. He told me that the final answer is no from the nephrologist and the neph doesn't "feel the need to see me" to talk about it because the answer is final.
So this time he still kept going at it, saying the rules are governed by federal law. I said it really can't be because BC doesn't have this law in Canada. That shut him up and he somehow changed his argument to "oh well we are CREDITED by the federal government.. our program made the rules and the fed approved of them". Then he got all annoyed and told me that I am crossing the boundaries because he doesn't know anything about the government.
Anyway.. I told him I MIGHT go to BC for transplant and he tried to convince me to not do that by the following two things:
1. he told me to do some research on emotional attachment vs the well-being of kidney transplants. Basically he wants to tell me that the "emotional attachment" part is important for the life of the kidney in the future.... -ok there MAY be some studies about this but I call it BAD SCIENCE. If there really is a correlation between the emotional attachment and the life of transplant, then the reasons can only be things other than biological.
2. he told me that the DNA match will likely be very poor, no more than 2/6. He told me to do research on DNA matching and the lifetime of transplant.
Basically he is pushing me to get my mom to donate because she will most prob be the better match. BTW..my mom is 53 and my potential donor is 27.
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wow Jadey! from what you've written my reaction is that this guy is full of SHIT/MERDE!
pardon my French (I'm just being bilingual per Canadian law - that's FEDERAL LAW ! :rofl;)
1. You caught him out and he backpeadled and basically spun crap to cover up. Bzzt!
2. You only have his word (and clearly you are not someone he actually likes, because you ask questions, actually do research and challenge his rule) - I wonder if it isn't worth a) writingto the neph with your concerns (all you have is verbal conversations) and/or copying the head of medicine or whoever is above renal with your concerns? If it is in writing they HAVE to respond in writing, and not with the snotty attitude this TC is giving you.
3. The "emotional attachment" argument makes no sense to me. What's his alleged point? I mean all of us who have the gift of tx are emotionally attached to it!!! Live or cadaveric donor alike. I don't see what that's got to do with the success of the donor, or how you found a willing donor - is he suggesting that since you don't know this potential donor very well the tx could fail??? I don't know anything about my donor!!! What a crock of merde!
4. Again, suggesting the match might be "bad" is BS!!! It's rare, but some cadaveric tx's have been 6/6 !!! There's been a couple on here. Also my tx is 0/6 match and it's working out great. my tx team have told me a few times that these days the actual HLA match (ie out of 6) is not so critical.
Sure, a relative tx is going to have a better chance for sure - I agree with that to that extent, but to basically dismiss other donors basically says that if you took his argument to its extreme than that tx unit should not be doing any non-related transplants - be it live or cadaveric. Clearly that would never happen.
wow, it's unbelieveable!!!
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jadey .... that guy is a freaking TOOL. I can't imagine any greater 'emotional attachment' for a transplant than one from a living donor (ANY living donor, whether altruistic or family, friend, etc). A living donor has chosen to offer a gift and any one who receives it is going to treasure it and want it to last the very longest that it can. Of course, the same is true for a cadavaric donation as well ..... you want that to last as long as possible and appreciate the fact that the person elected to be a donor before their tragic loss of life.
Go to B.C. if you think you'll get a better TC than this asshat !!
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I am so grateful that you guys are here... this guy tends to overpower me over the phone and I end up feeling stupid and accept what he says until after I think about it and tell others.
I am thinking of going to BC..will need to inquire what the steps are to move hospitals.
Now the bigger issue of staying in Manitoba is having to deal with this ass hat.
Thanks Todd and Richard for the input! :thx; This board keeps me sane right now lol
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holy crap I'm almost going to frame that post Jadey - normally I drive girls INSANE!!! :rofl;
Seriously this guy seems to be pulling out whatever lama (and inaccurate in my view) excuses he can to back up his / the unit's "policy" since he's poo poo'd your request to even consider a potential donor found online. I bet you if he's actually said anything to the neph he's certainly not going to have put it in neutral terms he will have coloured it with his own view(which we know) etc. It's very disappointing and hardly supportive.
no nice pressie for him!! I wish you had my TC to deal with. she's awesome.
I'm also wondering, regardless of the policy position of the unit and TC, that the way he's treated you doesn't seem very professional or supportive - at least how you've related it.
and yes, Todd, who is the new me, has called it like it is - he's a tool!
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:Kit n Stik;
asshat jadey
Jeez this makes me crazy. This coordinators sounds like he's making it up as he goes along. There are numerous people getting kidneys from strangers, all he has to do is read our News Stories section!
I hope you find a better situation and things work out for the best!
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Having worked with people needing transplants every day for the past 7+ years, my strong recommendation is not to have anything to do with foreign donor offers even if they seem very legitimate. I have facilitated more than 100 altruistic, non-related, living donor kidney transplants. Transplant candidates in Canada have had all foreign prospective donors rejected unless the donor is a relative. This is especially true in British Columbia and Royal Victoria Hospital in Montreal. The BC transplant society will allow living donors but only if they are non-directed, anonymous donors. Each province has its own rules and protocols. If you live in Ontario I suggest you contact Ed Cole, M.D., at Toronto General Hospital. I have assisted 5 Canadians who found altruistic, non-related, living donors who could not get transplanted in Canada. There are transplant centers in the US willing to accept such patients for transplant. It is an involved process due to the fact Canadian provinces only pay a fraction of the cost of a US transplant surgery. Usually only $35,000.00 to $40,000.00 at most. To get that support a patient must go through a very bureaucratic waiver process. Nevertheless, it can be done.
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okbb01,
I'm not sure what you do and where you are from.. but when I called Vancouver general hospital, what you said is not the case. The TC there told me that they do allow altruistic, non related donors.
It seems to me that you know a lot about transplant centres in Canada. Would you mind telling me where I can find such information?
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I'm going to make a comment, but before I do I am concerned that this comment may be taken the wrong way by some and seen as racist in some way, and I do NOT want anyone to think that - so I say this first .
My comment is that I wonder if Canada (or anyone fot that matter) makes a distinction between "foreign" donors in terms of where they are from and as such potential motivations. What I'm gettting at, at the core, is that say a donor from a 3rd world country could well have multiple motivations above sheer altruissm, such as a way to get entry, potentially permamently, to a western country like Canada or Australia etc for obvious reasons, given living conditions, social wellfare etc would be much better than conditions in their home country. I do not think the same concern, in general, could be made about a potential donor from somewhere like the US, or Australia - obviously there could still be a concern about someone wanting compensation like money or something.
I got to wondering about this in response to the post by okb01 that suggested Canada, in general, won't accept live (non related) donors from "foreign" sources that are directed - and wondering what would be the reasons behind this? As I suggested, without trying to sound racist or something, a prime consideration for some could be to somehow get out of the situation they are in, or even simply get some western money. What about, though, Jadey's case where she may find someone in the US willing to donate? I suppose it is cynical to view that anyone willing to donate to a stranger like that, across the border even, *must* be motivated by something above generosity to a fellow human being. We all know there are genuine people out there amongst those seeking something. Maybe it is to protect them against the cost of surgery/support (eg: what if something goes wrong for the donor post surgery? who is responsible for care etc?), maybe they don't want to get sued? Maybe they just don't trust the bonafides of most potential donors so a blanket rule(if it exists) is easier? I do not know.
By the way I actually think Australia is similar to Canada. The only "foreign donor" that I know of was a living relation to a patient who was in my D unit (and he was a UK citizen!!) - his uncle came in from an African country... I think Ghana, and they had to go through months of hoops just to get the OK from the govt to even allow this guy into the country to be tested to potentially donate. As it turns out, he could not donate.. and that patient returnted to the UK under the hope that his wait time would be less there than in Australia. I do not know of any trans-border non related donations here. I even wonder how we would handle a kidney exchange with NZ.
I guess these are more general thoughts than directly related to Jadey's question/issue but that's where this thread has taken my thinking.