Kidney patients at Shands Jacksonville wait (again) for another chance

Kidney patients at Shands Jacksonville wait (again) for another chance
The end of transplants at the hospital leaves some unsure of next step.
Posted: February 4, 2011 - 12:00am

By Jeremy Cox
The way Hugh Patterson sees it, his wife would have a new kidney by now - and a new lease on life - if they had gotten more notice that Shands Jacksonville was closing its transplant program.

Nine days after the closure became official, the San Marco couple learned that the kidney they had been waiting for was ready to be transplanted.

But they couldn't get it, they say, because they were stuck in medical limbo - no longer on Shands' waiting list and not yet on another hospital's.

Shands said it began sending certified letters Jan. 13, three days before the program closed its doors, to alert the 227 patients on its waiting list about the change. Under rules set by the United Network for Organ Sharing, the nonprofit that runs the nation's transplant system for the federal government, hospitals should give patients at least 30 days notice.

"Why weren't we notified in advance?" asked Patterson.

He added that his wife, Tammy, could have used the time to transfer onto the waiting lists at the two closest alternatives: Mayo Clinic's Jacksonville campus and Shands at the University of Florida in Gainesville. The organ network dictates that kidney patients affected by a closure can transfer their accrued waiting time when they join a new list.

Shands spokesman Dan Leveton said the hospital followed the network's guidelines that say hospitals "should" give notice at least 30 days ahead of time. That gives hospitals "a little leeway," Leveton said, as opposed to another stipulation that says hospitals "must" inform patients within seven days after a program's inactivation.

Florida law also is forgiving to transplant providers, stating that they must give patients notice "as soon as possible."

Shutting down voluntarily, as Shands has done, gives the hospital and UF the option in one year of reopening the program or shutting down permanently. But if recent history is any indication, the numbers aren't in Shands' favor.

David Vukich, the hospital's chief medical officer, said he doesn't know exactly why there have been fewer transplants, but he has a few suspicions.

One is competition. From its first full year in 2001, Mayo Clinic's kidney program has jumped from 48 to 96 transplants a year. Or maybe it was a lack of donors, Vukich said. Although kidneys are among the few organs that can be given by living donors, waiting lists remain stubbornly long.

Whatever the cause, he doesn't expect the hospital to lose much standing in the medical community with the program's closure.

"Now, the health care world is so big, it gets kind of lost with the proton beam and the trauma center," Vukich said.

The program got off to an inauspicious start in 1989. Lee Sill, the first kidney recipient, needed another transplant a year later and a third in 2007 because he suffers from a disease that causes his immune system to attack the kidneys. Now living near Charleston, S.C., and a father of two adopted children, he said last week he's feeling better than he has in years, thanks to his latest kidney being a close match.

As for those who are still awaiting the second chance Sill got, Shands Jacksonville is working to identify other facilities for the patients on its waiting list, Leveton said. And former transplant patients may continue to receive follow-up care at the hospital. The 11 staff members in the program are in line for other positions at the hospital, if possible.

An official at the Mayo Clinic, which has a waiting list of 600, said staff are working to streamline the application process as much as possible with the former Shands patients.

Over its two decades, Shands Jacksonville surgeons had performed 914 transplants. Tammy Patterson, who has the same disease as Sill and has undergone multiple transplants herself, wanted to be the 915th.

A couple of weeks ago, as she neared her first anniversary of being on Shands' waiting list, she and her husband learned that a terminally ill friend who had designated one of his kidneys for her had died. But the opportunity passed because the center had closed.

Hugh Patterson said they are working on transferring to Mayo or Shands in Gainesville and hoping they don't miss out again.

jeremy.cox@jacksonville.com, (904) 359-4083

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Comments (3)

By Ashford | 02/04/11 - 08:46 am
The officials at Shands should feel ashamed that this woman did not receive a kidney because of "red tape". Had they notified her the recommended thirty days in advance, she most likely would have been able to receive the kidney that became available. We're talking about someone's life here. Three days notice? That's inexcusable and inhumane.

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By RobertP27 | 02/04/11 - 02:07 pm
My name is Hugh Patterson, this story is about my wife and the other 226 patients left out in the cold by Shands.

The tragedy of this entire situation is that Shands Jacksonville brought it on themselves. They "voluntarily" became inactive, thereby removing 227 patients from the NATIONAL TRANSPLANT WAITING LIST. This decision was not forced upon them by some State or Federal Agency, they chose this. They chose the timing and the process. The fallout rests totally upon their shoulders, and I pray that not one patient dies as a result of this unfortunate and misguided decision.

Naturally, I wish the program had not been shut down, but I do understand the administrations reasons for doing so. HOWEVER, I do not support nor agree with the process by which they shut down the transplant program. Had they communicated with the patients their "intent" to go inactive, and provided a timeline to do so (say 6 months) AND immediately began to work with other nearby centers to transfer all patients to other programs without further testing and expense, then I would have supported this decision. I would not have liked it, but due diligence is due diligence.

However, this was NOT the process they chose. Instead they chose to close immediately with no notice to patients and sent out letters to patients 'after the fact' stating "the program is closed." We received initial word, not from the hospital, but by word of mouth from health care providers on Thursday, January 20.

On Tuesday, January 25, we learned of a friend that was nearing death due to a brain tumor and the family wanted Tammy to have his kidney. After many hours of phone calls and communications with various agencies and doctors, we learned that because the Jacksonville Center had closed, Tammy was no longer active on a waiting list and was therefore not entitled to this kidney. To say we were devasted would be an understatement. Oh, by the way, our letter from Shands formally telling us the center was closed arrived that very day. So had we not have private communication about the center closing, we would have had no knowledge and this situation could have been much worse. So within a week of the center closing it's door, we could have had a life sustaining transplant. A victim of the process!! I say it again, had Shands not closed its doors in such a secretive and quick fashion, my wife WOULD HAVE HAD a transplant. Instead, we continue with dialysis and have no idea when or if we will be approved by another center.

I am very troubled by Mr. Vukich's comment "he doesn't expect the hospital to lose much standing in the medical community with the program's closure...the health care world is so big, it gets kind of lost with the proton beam and the trauma center." So is he totally discarding the lives of 227 people and their families? Is my wife, the mother of my children, of no concern to him or the administrators of Shands Jacksonville? To be so casual as to be more concerned about their "standing in the medical community" than with the lives of 227 people that need a kidney transplant now, is a complete disgrace.

Let me be clear, if I find out that one of those 227 people have died, or heaven forbid, my wife dies as a direct result of this decision (meaning they are not able to get approval from another center or they die because they are overlooked because they are no longer listed), I will work with every agency known unto man to bring charges of medical neglect against Shands Jacksonville and hold them personally responsible. I am reasonably confident that if this were to happen, there would be 227 families involved in this class action.

Hear me, I am not the type to file suit for the sake of filing suit, I am not after money, it is about the lives of these 227 people and their families. Shands I challenge you, take whatever steps are necessary to "grandfather" each of these 227 patients to either Mayo Clinic or Shands Gainesville with immediate reinstatement to the National Transplant List and I will be satisfied. I am not interested in a long drawn out legal battle. I want my wife and the other 226 patients to live life to the fullest that they can.

In 1989, the doctors told me my wife had 8-10 years to live and that we would have no children. Our oldest son will graduate in June, and our younger son in 2013. Because of transplantation we have two wonderful boys born after the first transplant. Because of a second transplant in 1997, performed here in Jacksonville, my wife is still alive to hopefully see them graduate. We are now in need of a third transplant so she can watch them graduate from college,get married and raise a family. Transplantation gave me a family and has sustained my family. Shands, please do not make me a widower before 50 simply because of greed!!!

My prayers are for each of the other 226 patients on the list and I hope you have someone fighting for you as I am for my wife!!! We cannot sit idly by and let this happen to our families. We each have worked too hard to keep our families together and endure the pain and suffering associated with kidney disease and to sit back and let a hospital make such decisions cannot be tolerated and accepted.

Please join me in a letter writing campaign to the administrators of Shands Jacksonville expressing our displeasure with this decision and urging them to reactivate the center at least long enough to transfer each and every patient to another center without the chance of another missed transplant as we encountered.

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By 4whatitsworth | 02/04/11 - 01:18 pm
Whatever the cause, he doesn't expect the hospital to lose much standing in the medical community with the program's closure.

"Now, the health care world is so big, it gets kind of lost with the proton beam and the trauma center," Vukich said.

That those sentences popped right out at me. How dare he? Now they have lost any "standing" they had with me in the first place (not much), and although I am good health at this moment, Shands Jacksonville will be the last hospital I would give my business to.

Mr. & Mrs. Patterson, I hope you have a successful ending to this story and Mrs. Patterson will be able to enjoy her future with her family - hopefully grandchildren and perhaps even great-grandchildren. And I will write a letter to the powers that be at Shands on behalf of the 227 patients who were cast aside without notice. Shame on Shands Jax and Mr. Vukich for his careless and provoking words.

Read more at Jacksonville.com: http://jacksonville.com/news/health-and-fitness/2011-02-04/story/kidney-patients-shands-jacksonville-wait-again-another#ixzz1Ezhj7XcR