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Author Topic: Life NOT on the list  (Read 2747 times)
KatieV
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« Reply #25 on: February 19, 2019, 11:05:04 AM »

It has to be nation wide, so NO means NO everywhere with everyone.
Beware of unintended consequences with that one.  You are talking about replacing a free market with a cartel.

I'm a little sore about the local transplant surgeon denying me another transplant.  At the age of 25 for the reason "you've had more immunosuppression than anyone should ever have in their life".  And I know those meds come with a host of problems, but it really felt like he was giving me a death sentence.  There was no "arguing my case" in front of the whole transplant team, it was just his decision.  Period.  Final.

I found another transplant center that will take me, but I can't be listed because of distance.  So I have to find a living donor. 

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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Riki
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« Reply #26 on: February 20, 2019, 08:42:37 AM »

I wish I could just find another transplant center, but in Canada, you are listed by region.  If you want another center, you must move out of that region into another.  So, I'm stuck with the transplant team in Halifax, that is headed by a medical director who once told me that she would do everything in her power to keep me off the transplant list.  It appears she has succeeded.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
UkrainianTracksuit
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« Reply #27 on: February 20, 2019, 10:56:09 AM »

I hate poking into this section because of my current RRT so, I feel bad.

But Riki, I can't say I know your pain exactly, but I definitely encountered a similar situation. Many moons ago, I gave up on transplant and never bothered with it. I only heard bad things (drugs) about it but I had a run-in with a VERY highly respected nephrologist.

Being young, she accused me outright of being non-compliant with my care. Why? My blood pressure was always sky-high so duh, obviously I wasn't taking my pills. When actually, I was, and they just weren't the right combination. She pointedly told me I would have a heart attack sooner rather than later. What was that? A scare tactic? No matter how much I implored that I took my pills. "Is this what you want for your future?" was always her "trying to scare straight" line. My parents asked her, "what about a transplant?" She point blank told my parents that a) I wouldn't be approved b) I would destroy a new kidney.

Thankfully, years down the road, I have a great transplant team who don't even question my compliance. The only difference has been a geographic change. So, I hear what you mean when you say things could be different if, as Canadians, we could list at different centers. I'm always intrigued when our American friends discuss their listings at different places.
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #28 on: February 21, 2019, 06:06:20 AM »

Riki - If you think you have been kept off the list unfairly, get a lawyer. You may not have to sue, a letter from a lawyer pointing out your case and inferring that further action will be taken is a powerful tool.
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Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Riki
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« Reply #29 on: February 21, 2019, 10:38:37 AM »

Riki - If you think you have been kept off the list unfairly, get a lawyer. You may not have to sue, a letter from a lawyer pointing out your case and inferring that further action will be taken is a powerful tool.

I have thought about it.  The only problem is that I can't prove any of what was said to me, either by the medical director or by the social worker at the time.  She wasn't the medical director of the transplant team when shes aid those things, so when she originally tried to keep me off the list, she failed.  Now that she's in charge, I can't help but wonder if she's not pulling strings.  Again, I have no proof.

Something that did happen a few years ago, when I was first put "on hold."  I was trying to get on the high antibody list, and had arranged a telehealth session with the transplant surgeon and the transplant coordinator in Halifax.  My nephrologist examined me on camra while they watched.  At the end of it all, the surgeon announced that he thought I should be put on hold until I could lose weight.  It was not at all what I was seeing them for.  I was quite upset, and I emailed the transplant coordinator telling her that I'd felt betrayed by her because I'd been so blindsided.  She emailed me back, telling me that she had had words with the surgeon afterwards, because that wasn't what she had been there fpr either.  She thought I had been the perfect candidate for the new list and had no idea he was going to put me on hold.

Like I said, I can't help but wonder if strings are being pulled, but I have no proof
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
Simon Dog
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« Reply #30 on: February 21, 2019, 02:32:00 PM »

Riki - If you think you have been kept off the list unfairly, get a lawyer. You may not have to sue, a letter from a lawyer pointing out your case and inferring that further action will be taken is a powerful tool.
"Get a lawyer" is easy to say, but unless there is a strong possibility of a large settlement, the first words you are going to hear after explaining your case will be "I require a retainer of $Xthousand billed a $Xhundred per hour".
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Paul
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That's another fine TARDIS you got me into Stanley

« Reply #31 on: February 21, 2019, 02:46:08 PM »

Riki - If you get a lawyer involved they can ask "Exactly what is the problem with my client being on the list?" The reply will be a record that is useable in court. If you can then get a medical expert to say on record that this is rubbish, then you have a case. However it will probably not get that far. When the medical director gets that information (which your lawyer must give them or their lawyer by law) they will almost certainly back down (unless they are an idiot or have a desire to sabotage their own career). If you sue them and win, that is their medical career over. And even if they loose, the fact that they were sued over a matter of medical competence will severely damage their career. If they have even the slightest bit of self preservation they are not going to let it get to court, they will read your expert's report and "find" something in it that they will claim they did not realise, and use that as an excuse to reverse their decision.

Of course this is not a 100% guarantee, there are medical directors who are idiots, and it is possible that their lawyer will not point out the situation to them because the lawyer gets paid for a court case, win, loose or draw. However if you really want a transplant and you genuinely believe that you fulfill all the criteria, I think it is your best option.
« Last Edit: February 21, 2019, 02:49:10 PM by Paul » Logged

Whoever said "God does not make mistakes" has obviously never seen the complete bog up he made of my kidneys!
Paul
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That's another fine TARDIS you got me into Stanley

« Reply #32 on: February 21, 2019, 02:48:27 PM »

"Get a lawyer" is easy to say, but unless there is a strong possibility of a large settlement, the first words you are going to hear after explaining your case will be "I require a retainer of $Xthousand billed a $Xhundred per hour".

OK, I should have said "get a lawyer who is not a greedy bastard." Contrary to common belief, they do exist (hard to find but worth the effort).
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Riki
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« Reply #33 on: February 22, 2019, 08:49:55 AM »

"Get a lawyer" is easy to say, but unless there is a strong possibility of a large settlement, the first words you are going to hear after explaining your case will be "I require a retainer of $Xthousand billed a $Xhundred per hour".

OK, I should have said "get a lawyer who is not a greedy bastard." Contrary to common belief, they do exist (hard to find but worth the effort).

This is true, however, since I am a college student living with my mother because my disability pension wouldn't pay for a room in a rooming house in this city, I could never afford even the least greedy of lawyers.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
iolaire
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« Reply #34 on: February 22, 2019, 01:33:00 PM »

Like I said, I can't help but wonder if strings are being pulled, but I have no proof

Here in the US turnover is fairly high, especially on the transplant coordinator side, but also on the surgery side as people spend a few years at a hospital and then move on.  I imagine its like most jobs where if you really want a promotion and a position with more stature you need to go somewhere else. 

I wonder if its relatively similar in Canada and if you try every few years to get listed then one time you might get a yes even if nothing really has changed?

(Not to mention new studies (globally) might make doctors be more comfortable doing a transplant that they previously thought was risky?)
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Riki
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« Reply #35 on: February 24, 2019, 08:34:22 PM »

Like I said, I can't help but wonder if strings are being pulled, but I have no proof

Here in the US turnover is fairly high, especially on the transplant coordinator side, but also on the surgery side as people spend a few years at a hospital and then move on.  I imagine its like most jobs where if you really want a promotion and a position with more stature you need to go somewhere else. 

I wonder if its relatively similar in Canada and if you try every few years to get listed then one time you might get a yes even if nothing really has changed?

(Not to mention new studies (globally) might make doctors be more comfortable doing a transplant that they previously thought was risky?)

Some of the surgeons that are there are the same ones who were there when I got my first kidney back in 1992.  They were much younger then, but still, it's the same group.  The social workers are the ones who seem to have a revolving door, to a point that I can't remember all their names, including the one who smiled at me and asked me why I was sabotaging my transplants.  The medical team, at the time, were concerned with the fact that I wasn't upset when they told me that my transplant was failing.  The thing was, they seemed to forget that they had told me the same thing six months before.  I had been incredibly upset then, but in those six months, I'd come to terms with it, and that I'd need to start dialysis again.
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
iolaire
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« Reply #36 on: February 25, 2019, 05:04:21 AM »

Thatís too bad. Did you see dialysis change much since the early 1990ís?
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
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