Someone Needs To Get Their House In Order

There are certain situations that really are troubling & conflicting.  This is one. I feel so deeply for the patients at this center.

Even before this though, I knew that UPMC was in trouble, mostly from this situation in June I came across.

In both situations, there is immense conflict on several different levels for me.  This conflict stems from the realities of being a transplant candidate as well as a professional who has worked the spectrum of healthcare in various aspects for quite awhile.

No one ever wants to see a transplant center’s status revoked.  One could argue that June incident could be seen from both sides & it was more of an ethical dilemma over the scoring & listing process & that center’s interpretation of following those protocols. It wasn’t a direct patient safety issue,  but this infraction is, & is too large to overlook or debate.

In the end, the ones who pay the highest cost in all this are the listees & those who have passed from a situation they were placed in at their most vulnerable & weak point medically but when they had invested the most trust mentally.   Trust & faith in your center & team is equally pivotal & central to a successful outcome as advances in transplantation itself.

The fact that this was a specific mold that only targets this population is a serious oversight and patient safety issue.  I know that’s so generic & even too casual a general truth to even put to typeface.   This is a gross abuse of trust.

Unnecessary lives will be lost while the center is shut down. There are platitudes to make sure those 1300 waiting don’t fall by the wayside, but those empty words from broken trust are on shaky ground.

I wish I could say that this was an isolated incident.  Yet, sadly it doesn’t appear to be.  Lee Memorial’s live kidney donor program was shut down in August after a patient death.  The details surrounding that are sketchy, just stating that a living donor  developed a complication.

The transplant experience is hard enough without centers who are supposed to be protecting patients making it next to impossible.   The donor pool thin & sometimes very few centers close to those who need them without relocation or other undue burdens or barriers to access.

When one center fails, not only do candidates suffer, so does the system itself.  But sometimes that revocation is necessary & appropriate even when painful to protect the community.

It may not seem like much when were are only seeing reports of a center or two. Yet if you look at the Scientific Registry of Transplant Recipients  (SRTR)’s waitlist activity report, it’s still distressing.  (What I pulled was the just the lung data).  You’ll see even with the number of centers, how this could have an impact based on the loads these centers are carrying.

What is ultimately distressing about UPMC is that is one of the busiest centers in part because it was a dual-listing site.  Patients were listed there & at another center simultaneously in hopes of decreasing their time on the list or increasing their ability for obtaining a donor match & many choose UPMC because of their shorter wait time criteria & because they were also high volume (did several transplants).   This is going to be a huge blow to some people who may now lose their dual listing status. Because it’s possible the other center they listed at is harder to access or may have a longer wait time.   If you really want to see how that impacts, people look at the average wait time for organs in general.

They really need to get their house in order.  For everyone.

I realize this is choppy & clunky, that’s because I’m reporting as much fact without bringing too much emotional weight into the conversation myself, yet feeling deeply for the candidates & recipients who are in this position.  But I am so lucky to have the center I do with the attention & care they put into each patient even though they are a high-volume center too.  I just wish every candidate was afforded that same opportunity with their centers that I had with mine.

It will be interesting to follow this & see how it unfolds; although I regret I have to follow it at all. But concern for my fellow community compels me.

UPDATE: About 3 days after this article posted & I blogged about it, the center re-opened.

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2 thoughts on “Someone Needs To Get Their House In Order

  1. Pingback: Someone Needs To Get Their House In Order: A Follow-Up | AS I LIVE & BREATHE

  2. Pingback: Response To: The Search For A ‘Perfect’ Organ Cost My Wife Her Life | AS I LIVE & BREATHE

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