HELP! Transplant question

[Riki]

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?

 

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.

[jadey]

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!

[okarol]

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!

[RichardMEL]

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.

 

[jadey]

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.

[RichardMEL]

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 !   )

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!!!

[ToddB0130]

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 !!

[jadey]

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! This board keeps me sane right now lol

[RichardMEL]

holy crap I'm almost going to frame that post Jadey - normally I drive girls INSANE!!! 

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!

[okarol]

     

      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!

[okbb01]

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.

[jadey]

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?

[RichardMEL]

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.