Dream becomes nightmare after misdiagnosis

[Heracles 417]

Alex's dream becomes nightmare after organ donation

http://www.smh.com.au/ffximage/2008/04/08/...__470x349,0.jpg

Alex Koehne ... pictured here on a Facebook site dedicated to him.

April 8, 2008 - 10:34AM

Alex Koehne had a love for life, and always wanted to help people. So when his parents were told that their 15-year-old son was dying of bacterial meningitis, the couple didn't hesitate in donating his organs to desperately ill transplant recipients.

"I immediately said, 'Let's do it'," Jim Koehne recalled. "We both thought it was a great idea. This is who Alex was."

A year later, their dream that Alex's spirit might somehow live on has become a nightmare.

It turned out that Alex did not die of bacterial meningitis, but rather a rare form of lymphoma that wasn't found until his autopsy, and apparently spread to the organ recipients. The Long Island couple was told that two of the recipients have died, and two others had the donor kidneys removed and are getting cancer treatment.

The revelation has led two hospitals to revise transplant procedures, although the state Health Department found that no one was to blame. Experts say the possibility of getting cancer from an organ donor is extremely rare: Only 64 cases have been identified in a national study of 230,000 cases, according to the United Network for Organ Sharing.

"A 15-year-old boy's organs are a gift from the Almighty," said transplant surgeon Lewis Teperman, noting the majority of organ donors are much older than Alex. "Usually the organs from a 15-year-old are perfect. In this case, they weren't."

Teperman is the director of transplantation at New York University Medical Center, where two of the transplants were done and lead author of a report on the case.

Last March, Alex was taken to Stony Brook University Hospital on Long Island after treatment at another hospital for nausea, vomiting, severe back and neck pain, seizures and double vision. Doctors told his parents they suspected he had bacterial meningitis - an infection of the fluid surrounding the spinal cord and brain - although tests didn't reveal what bacteria caused it.

He was treated with antibiotics but died on March 30.

The Koehnes requested an autopsy. They were told a month later that Alex had actually died from a rare form of non-Hodgkin's lymphoma, a blood cancer which affects fewer than 1,500 patients in the U.S. annually.

"Our jaws dropped," Jim Koehne recalled. "We walked out of there crying."

Jim and Lisa Koehne later learned that a 52-year-old man died of the same rare lymphoma about four months after receiving Alex's liver. The couple said they were also told a 36-year-old woman who received Alex's pancreas also developed lymphoma and died.

Two patients who received the kidneys are undergoing cancer treatment and are faring well, according to the report in the January issue of the American Journal of Transplantation.

All four recipients were notified immediately of the autopsy results and got chemotherapy, the report said. None have been publicly identified.

The transplants were done at Stony Brook, NYU Medical Center and the University of Minnesota, according to Newsday, which first reported on the case.

The report's authors noted a diagnosis of bacterial meningitis does not preclude donating organs because the recipients can be given antibiotics to prevent infection, but they concluded "a more thorough evaluation of the donor" should be done when there is any doubt.

"Tumors, especially lymphoma, can masquerade as other causes of death, and may be missed in potential donors," they wrote.

Teperman, who was not involved in the case, said the review did not fault anyone who made the incorrect diagnosis.

"No one was able to say they could have figured out that this diagnosis was lymphoma," he said. "We are recommending that if the reported case is bacterial meningitis, maybe wait and get more cultures, possibly don't take the organs."

But, he added, this case is so rare that it would have been difficult for anyone to predict what might have happened, and that physicians acted in good faith in trying to harvest organs for desperately ill recipients.

NYU and Minnesota now follow the recommendation for additional tests for bacterial meningitis.

Stony Brook officials said they followed organ donor network guidelines, but cited federal privacy laws in declining to specifically discuss the Koehne case.

A review by the state Health Department "did not find flaws in policies, procedures and actions at Stony Brook" involving Alex's case, said agency spokeswoman Claudia Hutton.

The New York Organ Donor Network, which coordinated the transplants, issued a statement of sympathy for the family. The network pointed out that 22,000 patients received life-saving organ transplants in the U.S. in 2007, and another 6,411 patients died while awaiting organ donations.

The Koehnes have not sued, although their attorney, Edward Burke, said they are considering all legal options.

At 5-foot-11, Alex was already as tall as his father. He was in the church youth ministry and was a lineman for the East Hampton High Bonackers junior varsity team.

"He loved football," his dad recalled. "He would watch ESPN every morning and then come downstairs and tell me all about it."

The Koehnes have started a foundation to fund cancer research, which is receiving strong community support.

"Alex had more friends than we knew," his father said.

Despite the outcome, he and his wife believe organ donors save lives, and have no regrets about their decision.

"We would absolutely, positively do it again," Jim Koehne said. "I haven't done it yet, but I am definitely going to sign up myself."

AP

http://www.smh.com.au/news/world/dream-bec...ge#contentSwap1

[Trumplestiltskin 5,791]

This sounds like a diagnostic oversight and a justifiable case for a lawsuit for the patients who received the diseased kidneys.

This has however, been done deliberately by medical professionals engaging in illegal organ harvesting without the consent of the patient or their family. That's what happened to Alastair Cooke a couple years ago.

[Heracles 417]

This sounds like a diagnostic oversight and a justifiable case for a lawsuit for the patients who received the diseased kidneys.

This has however, been done deliberately by medical professionals engaging in illegal organ harvesting without the consent of the patient or their family. That's what happened to Alastair Cooke a couple years ago.

Yes people here can sue but I don't honestly think they should be able to for something like this. It is very very difficult to detect stuff like this.

[Trumplestiltskin 5,791]

This sounds like a diagnostic oversight and a justifiable case for a lawsuit for the patients who received the diseased kidneys.

This has however, been done deliberately by medical professionals engaging in illegal organ harvesting without the consent of the patient or their family. That's what happened to Alastair Cooke a couple years ago.

Yes people here can sue but I don't honestly think they should be able to for something like this. It is very very difficult to detect stuff like this.

The people received a transplant of diseased tissue that has caused a potentially life-threatening condition!

They shouldn't be able to sue simply because Lymphoma is one of the most commonly misdiagnosed diseases (and misdiagnosed cancers)?

Its difficult to diagnose because the symptoms are inconsistent and it requires more detailed attention than a physician is often willing to provide during the course of a 15 minute GP exam.

Edited April 8, 2008 by Number 6

[Heracles 417]

The people received a transplant of diseased tissue that has caused a potentially life-threatening condition!

They shouldn't be able to sue simply because Lymphoma is one of the most commonly misdiagnosed diseases (and misdiagnosed cancers)?

Its difficult to diagnose because the symptoms are inconsistent and it requires more detailed attention than a physician is often willing to provide during the course of a 15 minute GP exam.

Not as easy as that. In many cases a doctor has to know what they are looking for otherwise they will not find it. There are numerous diseases whose symptoms are similar to one another.

Edited April 8, 2008 by Boo-Yah!

[Trumplestiltskin 5,791]

The people received a transplant of diseased tissue that has caused a potentially life-threatening condition!

They shouldn't be able to sue simply because Lymphoma is one of the most commonly misdiagnosed diseases (and misdiagnosed cancers)?

Its difficult to diagnose because the symptoms are inconsistent and it requires more detailed attention than a physician is often willing to provide during the course of a 15 minute GP exam.

Not as easy as that. In many cases a doctor has to know what they are looking for otherwise they will not find it. There are numerous diseases whose symptoms are similar to one another.

Lymphoma is actually one of the most common forms of cancer.

[Heracles 417]

The people received a transplant of diseased tissue that has caused a potentially life-threatening condition!

They shouldn't be able to sue simply because Lymphoma is one of the most commonly misdiagnosed diseases (and misdiagnosed cancers)?

Its difficult to diagnose because the symptoms are inconsistent and it requires more detailed attention than a physician is often willing to provide during the course of a 15 minute GP exam.

Not as easy as that. In many cases a doctor has to know what they are looking for otherwise they will not find it. There are numerous diseases whose symptoms are similar to one another.

Lymphoma is actually one of the most common forms of cancer.

The diagnosis is hardly negligence considering the disease affects 1,500 annually out of 300,000,000. As I said earlier, the doctor usually has to have an idea of what they are looking for in-order for them to request the appropriate test.

They were told a month later that Alex had actually died from a rare form of non-Hodgkin's lymphoma, a blood cancer which affects fewer than 1,500 patients in the U.S. annually.

[Trumplestiltskin 5,791]

The diagnosis is hardly negligence considering the disease affects 1,500 annually out of 300,000,000. As I said earlier, the doctor usually has to have an idea of what they are looking for in-order for them to request the appropriate test.

They were told a month later that Alex had actually died from a rare form of non-Hodgkin's lymphoma, a blood cancer which affects fewer than 1,500 patients in the U.S. annually.

Lymphomas are one of the most common forms of cancer in that particular age group.

[Saddle Bronc 124]

Clarification for both #6 and Boo-Yah: the particular form of N-H Lymphoma is rare--where N-H Lymphomas as a whole are not.

[Trumplestiltskin 5,791]

Clarification for both #6 and Boo-Yah: the particular form of N-H Lymphoma is rare--where N-H Lymphomas as a whole are not.

That form is - but Lymphomas as a whole are one of the most commonly diagnosed forms of cancer in the 15-19 age group.

[chnst 6]

Clarification for both #6 and Boo-Yah: the particular form of N-H Lymphoma is rare--where N-H Lymphomas as a whole are not.

That form is - but Lymphomas as a whole are one of the most commonly diagnosed forms of cancer in the 15-19 age group.

that is very tragic, but the onset of the patients symptoms seems very unusual for that kind of lymphoma. The way his symptoms are decribed and how fast he actually died- is more typical for a bacterial meningitis than a N-H-Lymphoma.

I do agree that there should be a more thorough testing of potential organ donors, but with the limited time window for transplants, I doubt that there will be enough time to exclude every possible disease.

[Peikko 1,575]

It's just terribly sad. The boy died, his parents tried to get something positive out of that death but the result was in fact a transfer of the real illness to more people. The parents must feel devastated all over again. The transplant recipients, two of whom already have died, face complications as a result of the transplants.

As for who should sue who and why, if it produces any benefit then I guess it's a good idea. Certainly those patients who received transplants and are now facing further treatment as a result of the undiagnosed lymphoma should be able to get funds to ensure they get the care they require. Apart from that, I really don't have any answers.

[Toshtishtash 1]

My aunt died of Non-Hodgkins lymphoma a few years ago now. It is quite rare form of cancer. I had never actually heard of it before then.

[Trumplestiltskin 5,791]

Clarification for both #6 and Boo-Yah: the particular form of N-H Lymphoma is rare--where N-H Lymphomas as a whole are not.

That form is - but Lymphomas as a whole are one of the most commonly diagnosed forms of cancer in the 15-19 age group.

that is very tragic, but the onset of the patients symptoms seems very unusual for that kind of lymphoma. The way his symptoms are decribed and how fast he actually died- is more typical for a bacterial meningitis than a N-H-Lymphoma.

I do agree that there should be a more thorough testing of potential organ donors, but with the limited time window for transplants, I doubt that there will be enough time to exclude every possible disease.

From what I understand - the problem with (all) Lymphoma is that its very commonly misdiagnosed, precisely because there aren't consistent symptoms associated with it and because a diagnosis requires closer inspection from the doctor than you usually get from a 15 minute GP appointment. Putting it down to a disease or visus is actually quite common - and many such cases are already in advanced stages by the time they have diagnosed. On the other side of it - lymphomas have fairly high survival rates compared to other forms of cancer (Hodgkins more so than Non-Hodgkins varieties).

I should stress of course that I'm no expert on this - I had biopsy surgery about 3 years ago on swollen lymph nodes in the neck and did a bit of reading.

Edited April 8, 2008 by Number 6

[chnst 6]

you are right, number 6, there is a form of Non hodgkin's that has a bad outlook, but I just have never seen anyone coming in with these acute symptoms and dying within just a couple of days. It must have been a very advanced stadium, but it's weird that there was no previous symptomatic. Thats why I think nobody even assumed cancer.

I am not an expert either, I have seen a couple cases while I was working as a pedi nurse in Germany.

I think N-H-Lymphoma is one of the deadliest in child-age cancers. really sad story, i feel bad or the organ recipients. that's the worst case scenario when you receive organs from a cancer patient, while your immune system is basically put out