HELP! Transplant question

[jadey]

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....

[RichardMEL]

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.

[jadey]

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.

[jadey]

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.

[jadey]

OH AND THE TRANSPLANT COORDINATOR SAID I WAS SOLICITING! why? because I went online trying to look for a donor. That is apparently soliciting.

[Riki]

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.

[cariad]

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.

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.

[jadey]

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.

[Lovebelle]

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! 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.

[Riki]

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

[Riki]

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.

[RichardMEL]

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 !!!!

[jadey]

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

[jadey]

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! 

Thanks a lot though

[RichardMEL]

Seems that mr TC really doesn't have any respect for online fridnships. Wow, this forum better shut down right now!!! 

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 ( ) 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.....

[jadey]

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. 

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.

[okarol]

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.

[Riki]

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

[jadey]

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?

[Riki]

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

[ToddB0130]

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.

[KarenInWA]

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

[jadey]

That's great to hear Karen!

[RichardMEL]

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.

[Poppylicious]

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?

 

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.