Response To: The Search For A ‘Perfect’ Organ Cost My Wife Her Life

This article is brutally honest.  I understand much of it & disagree with some minor points overall. I do understand & agree where Brian is coming from.  It’s a hard read.  Kicks up a lot of emotion.

But this is one reason why I was happy when my friends & I moved to Pennsylvania in 2010, way before any of this talk was in the picture.

No doubt I received great care in NYC,  but I actually receive better in PA, both locally & at my current center.

I had friends in the next few years who would be evaluated at Columbia but given a lot of this same exact runaround, & urged them if at all possible to get a second opinion elsewhere, (mainly at my center.)

There are also centers that are stronger than Columbia but also in regions where their wait times are longer (sometimes triple what my average is).  Some are stronger, but their waits are shorter. It can vary region to region & the volume of transplants each center does.

I totally understand Brian’s frustrations with the system.  Yet for someone who also studies history over time, I know the allocations were much tougher years before as well.  Many people who could have qualified for transplant now, were disqualified. Others weren’t offered or given an evaluation even.  Priority & scoring wasn’t based on the criteria that is now which is still far more equitable.

Under the old criteria, I probably couldn’t list at all. Other centers wouldn’t touch or evaluate me because of certain problems like reflux or because I had my lungs glued to my chest to keep them from collapsing.  So I see both sides of the equation here because I was one for a long time who wouldn’t have qualified, even though I am considered a good candidate now & actively listed.

It does frustrate me to the Nth degree that when this woman requested a living donor & had an organ that was eligible for one & had 5 people step forward  — the process (the obtuse bureaucracy, that is) —  got in the way, thus impeding what could have been a real solution.

Had those donors been taken seriously & worked up like they would have been at other centers (& quite frankly, in other countries even) the outcome might have been quite different.

It’s truly unfortunate how this all unfolded. A life was lost unnecessarily.

There are already too few centers in actuality.

There are a few with serious issues not only with wait times & evaluation processes but other factors that propose serious risks to patient safety. Others have ended their programs for reasons unknown to the public.

I will correct one thing. I understand his anger about hospitals fighting over organs, but one center for one organ is not sufficient or realistic.

Some smaller hospitals like one in my area do kidney transplants but that’s all they do.    If I had to go elsewhere for my lungs than where I’m listed now it could be even more of a hardship for me than it already is.  This problem isn’t the real issue.

The real issue is who makes those decisions on the acceptability of organs for that center.  This again is some issue that lies squarely on Columbia’s shoulders with how they manage the organs they are offered.

It is also a failure on their part to not inform patients as part of the process that if their weight might be longer than average or they don’t agree with some of their allocation policies that they do have a right to dual list.   Because many centers do make sure they talk about that reality with their patients first thing  in language they can relate to (instead of handing them a paper to read) as part of the process because they believe in being upfront about everything.

Had I still lived in NY I would have bypassed Columbia completely based on experiences I heard from other women with my disease because of how they even manage their evaluation (testing) decisions, much less allocations & transplants themselves. Everything I heard including the way they treated their patients made me wholly uncomfortable.

It would have been a severe drain more so than mine now because I would have had to completely relocate for much longer, but still it would have been worth it.

We’ve recently had some pains in communication with my center lately due to staff members leaving & new people coming in but the bottomline care & trust is there.  They work hard to keep it intact & it shows.

I see it & value it as does every patient under it’s care.  We are not afterthoughts in the process, we are all a team & expected to be involved at every step on the path.

Columbia unfortunately has a different approach & while it might be working for some, it doesn’t work for as many as it needs to.

That’s truly unfortunate because it’s clear to see the cost of that when you cut people out of decisions they should be weighing in on.

The system itself isn’t perfect.  The issues Brian points are real but those broken bridges & problems lie squarely on the shoulders of that particular center as a result of how they choose to operate their program, not with how the system is set up overall.

UPMC had issues with mold exposure to patients in a vulnerable state where their patients hoped to be safe.  The center failed them in that regard.  Huge breach of trust. I blogged about that when I found out about it.

They were rightfully shut down for a time for strict corrective action,  but no other centers were penalized because no other centers had that problem, nor did they egregiously ignore it to the degree that UPMC did even after the whistle was blown on it.

They were too slow to correct, but they were made to face a consequence for their lack of action & breach of trust.

This is no different.  This woman entrusted her center to take care of her & let her be involved in the process & her center clearly failed her & her family.

I say this distinction out of concern for there to be rules brought forth or massive changes brought forth to punish centers as a whole,  rather than direct them at the ones who actually do fail their patients out right & fall short.

I certainly hope to see some corrective action & recommendations made to Columbia directly to be held accountable for this failure, because this rests squarely on their shoulders & theirs alone.

That may seem harsh to say, but it’s the truth.

Those of us know this journey is hard enough. If you can’t trust your center in these situations, who can you really trust?

There is for sure a system broken here, but it’s Columbia’s system & how they deal with their patients & their allocations.

Columbia needs to own it & rectify it for their sake & for their future & current patients sake.  Their patients deserve that.  That broken trust needs to be restored.

As you can see, lives are at stake.

 

 

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2 thoughts on “Response To: The Search For A ‘Perfect’ Organ Cost My Wife Her Life

  1. Brutal article ….. and your comments are good. Each center takes a subjective look at potential organs. I would like to see data on organs that were “passed” initially by one center, only to be accepted by a subsequent center.

    Additionally, on occasion if a center does not have an active transplant surgeon on hand (at that exact moment), hey will pass on an organ. I’m guessing this has caused longer wait times for some ….. and potentially some additional deaths?

    Each year OPTN tries to improve and fine tune the system ….. but decisions made subjectively can make it spin out of control.

    Liked by 1 person

    • all great points too DAP. I too would like to see that data because I know that happens. I wholeheartedly agree with your assessment too. I think OPTN does quite well, but yes is always looking & striving for improvements & one way they do that? (As we both know) actively soliciting feedback from candidates, recipients & families on issues where the system works & where it doesn’t completely work. That shows a commitment to really working towards an equitable system.

      Like

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