UNOS - Bottom Up

The following is an excerpt from a UNOS response to my request for the 4 appeal letters my NMH transplant team sent on my behalf to UNOS requesting a liver for transplantation. I grant my permission to share this doc with others – the comments in ( )s are mine to help my lay friends.

This appears to be the third appeal NMH sent although UNOS claims it’s the only appeal they received from my Drs at NMH. My Drs said I was denied by UNOS three times prior to approval (obviously) on the fourth appeal. Note that this 3rd appeal (below) states: DENIED.

It’s taken 6 mos to get just this much. UNOS is a highly inefficient and incompetent organization responsible for allocating life needed organs and untold miscommunications, lost organs, medical allocation incompetence… ( My personal experience suggests UNOS, as a whole, might suffer from balderdash syndrome, a disorder characterized by nonsensical or wrong answers to questions? ).

MELD Exception Appeal

Case # 101602 Submitted 02/02/2023 17:58:04 Status Denied
Resolved 02/13/2023 12:03:03
ILNM-TX1 Adult Date of birth Waitlist ID SSN
A
TERRENCE P ENRIGHT 1/22/1957 1444616 336-52-2223

Important! This candidate has been removed from the waiting list.

We are requesting MELD exception for consideration of retransplant for our patient who developed a COVID associated late hepatic artery
thrombosis which has resulted in severe bilomas with multiple infections from multidrug resistant organisms.

Within two weeks of HAT (hepatic artery
thrombosis), he developed large bilomas (2-3cm) throughout his liver with associated sepsis fevers/leukocytosis/hypotension with aeromonas bacteremia. Subsequent biliary aspiration has grown multiple MDROs (Multidrug-Resistant Organisms) x2: once with VRE (“Bacteria resistant to powerful antibiotics”) and candida glabrata and later with VRE and Stenotrophomonas (Stenotrophomonas maltophilia is one of the less known drug-resistant bacteria that can cause challenging infections.) both in the setting of clinical sepsis(Sepsis – a life-threatening complication from infection). He initially had ERCP attempted drainage of the biliary system however endoscopic stents were unsuccessful at providing adequate drainage of peripheral bilomas (defined as an abnormal, extra-biliary collection (pools) of bile (in my case, harboring above referred to infections)). Ultimately PTC of the left and right systems with internal and external drains were successful however he has multiple large persistent bilomas throughout the periphery of the liver without discernible biliary system remaining on cholangiograms (cholangiography is a technique used to image the biliary tree. “Without” means just that. My biliary system had been, in the words of my hepatologist, DR Boike, “turned to MUSH”.). He has remained on broad spectrum antibiotics and antifungals given recurrent episodes of fevers with recurrent hospitalization. He has lost ~40lbs since recovery after transplant with BMI 25 to 20 currently.

His native MELD remains low at 8

and thus we are requesting MELD exception of median MELD at transplant to facilitate re-do liver transplant given COVID provoked HAT leading to obliteration of his biliary system with multiple bilomas and recurrent infections with drug resistant organisms.

Review Board Voting
Name Vote Comments
XXXXXX Approve
XXXXXX Deny MELD exception not supported for late HAT with typical symptoms including hepatic
abscess/biloma
XXXXXX Approve
XXXXXX Deny Per OPTN guidance, pt does not meet criteria for
MELD exception

juan carlos caicedo
Transplant physician name:
R 1548216435

RE: [EXTERNAL] Re: SECURE: UNOS Response to 02.08.2024 Email

Mr. Enright,

Good day.

What we have provided you is the entire record we have on file for you, sir and at no point are we denying you access to your records. We have in fact provided the entire record set we have for you. Your transplant team submits all data that is collected in our system. As indicated in the letter, you will need to consult with your transplant team because they have not submitted any additional appeals to us on your behalf.

I encourage you to request your records from your transplant center and/or speak with your care team to determine the status of the documentation you indicate was submitted; because we have nothing more in our possession.

We have provided you with everything the transplant center has submitted into the OPTN Computer System.

Tynisha Smith
Compliance and Privacy Program Manager |Enterprise Data Management

tynisha.smith@unos.org
office: 804-782-4847
700 North 4th Street, Richmond, VA 23219

From: T Enright <lsq2536@gmail.com>
Sent: Saturday, February 10, 2024 4:38 AM
To: Privacy <Privacy@unos.org>
Subject: [EXTERNAL] Re: SECURE: UNOS Response to 02.08.2024 Email

Tynisha,

AGAIN, your response and files are incomplete. It contains one, 1, appeal letter. There were FOUR, 4! Please surrender to me ALL my letters and records.

There also was nothing about the 2nd transplant actually happening.

I especially want the last appeal letter for the liver that was "approved." It did happen. I have the liver to prove it.

Why are you denying me my legal rights?

Terry Enright

On Thu, Feb 8, 2024 at 12:47 PM T Enright <lsq2536@gmail.com> wrote:

Tynisha,
Thanks for the prompt response making my c.c.s unnecessary. Would have been nice if you had told me the records you sent were incomplete.

I await the next release,

Terrence

On Thu, Feb 8, 2024 at 8:57 AM Privacy <Privacy@unos.org> wrote:
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