Hand me down Kidney

[conchman]

By JoNel Aleccia
Reported at MSNChicago Dateline


A single kidney that was transplanted twice in two weeks is working fine after what appears to be the first-ever case of doctors salvaging a hand-me-down organ after it started to fail.

Erwin Gomez, a 67-year-old Chicago-area surgeon and father of five, is the third and, hopefully, final owner of the kidney, which was transplanted last June 16 -- and again on June 30 -- at Northwestern Memorial Hospital in Chicago.

It originally came from Cera Fearing, a 21-year-old day care worker from Elk Grove, Ill., who donated the organ in hopes of helping her big brother.

“The whole point of giving it was to give him a new life,” she said.
 
Instead, Ray Fearing, 27, of Arlington Heights, learned within days of receiving Cera’s kidney that the organ was failing, attacked by a reoccurence of his longtime disorder, focal segmental glomerulosclerosis, or FSGS, a common kidney disease in which scar tissue develops on the part of the kidney that filters waste from the blood.

Dr. Lorenzo Gallon, the transplant expert who treated Fearing, said he just couldn't stand to let a good organ go to waste, especially in a nation where nearly 92,000 people are waiting for a kidney transplant.

"This kind of like haunted me," said Gallon, who is medical director of the hospital's kidney transplant program and associate professor of medicine and surgery at the Northwestern University Feinberg School of Medicine. "I thought, I just gotta do something so at least something good can come out of this."

Gallon had warned Fearing that there was perhaps a 50-50 chance that the kidney could fail because transplantation doesn't always stop FSGS. In addition, a reoccurence of the disease could threaten Fearing's life. When Gallon saw signs that it was happening, he consulted with his colleagues and with the hospital ethics board to discuss reusing the kidney in another patient.

"The kidney ... was still a relatively healthy, viable organ that could be transplanted into someone else without FSGS," said Gallon, whose feat is chronicled in a letter in the latest issue of the New England Journal of Medicine.

At first, the news was disappointing for both Ray Fearing and his sister. 

“When I found out it was going to be taken out of my brother, I was a little upset,” Cera Fearing said. “I figured it was going to go into the trash.”

Doctors offered Ray Fearing three options: Keep the new organ and hope for the best, remove the kidney and discard it, or donate it to someone else.

For Fearing, who was diagnosed with FSGS at age 15 and had spent 10 years hoping for a kidney, the choice was obvious.

 “Why would I just throw out a kidney?” he said. “I know exactly what it’s like to want it so bad.”

That’s where Dr. Erwin Gomez came in. He’d been on the kidney transplant waiting list for about four months, after diabetes and poorly controlled high blood pressure left him on the verge of kidney failure.

“Initially, I was hesitant,” said Gomez, who worried about the condition of an organ that had already been transplanted once.

But when doctors told him the FSGS now affecting the transplanted kidney was reversible, and he would ultimately wind up with a healthy organ from a living, 21-year-old donor -- all without the typical five-year wait -- he decided to go ahead. Within days, the new kidney was functioning normally.

“I consider myself very blessed, with a well-matched kidney,” Gomez said.

Fellow kidney transplant specialists consider Erwin blessed as well. Dr. Matthew Cooper, director of the kidney transplant program at the University of Maryland, had never heard of a failing kidney being removed from an FSGS patient and re-implanted in another person.

“It’s pretty amazing stuff,” said Cooper, who chairs the National Kidney Foundation's "End the Wait Committee." “It’s very difficult once that kidney is transplanted to think about re-transplanting it.”

The trio that shared the kidney -- Cera Fearing, Ray Fearing and Gomez -- met for the first time Wednesday in an emotional encounter at the hospital.

Ray Fearing is now back on dialysis, with possible plans to seek another kidney transplant in a couple of years. He says he’s doing fine, and has recently discovered that he can travel and obtain dialysis in different locations across the country.

Gallon, who expressed affection and admiration for Fearing and his family, says it may be possible for the young man to have another transplant in the future, and there's a chance that the organ will function properly. For other patients awaiting kidney transplants, he says the success of the secondhand implant could well spur new research into FSGS and new thinking about what to do when an organ fails.

"Instead of tossing them out, you'll reuse them," he said. "It opens the window to using organs that we would throw away."

[paris]

Wow.  This makes me a little uncomfortable because my transplanted kidney was diagnosed with FSGS at two weeks post transplant.  I can't imagine the doctor giving me those choices.  I'm all for reusing the kidney - that is a great idea.  But it took a few years for the FSGS to take my native kidneys, so I am hoping this will be slow in progressing this time around.  The article sounds like a happy story, but for Ray Fearing, it must have been a nightmare.   I am glad someone got the kidney and is doing well.    I need to read this again and try not to see myself in that spot.  I know FSGS will eventually take over the kidney,  but I am feeling great in the meantime. 

Thanks for posting this.

[MooseMom]

Paris, it has always been my understanding that the younger you are when fsgs is diagnosed, the more aggressive it tends to be.

Also, they are pretty certain that fsgs is present in people with a higher level of suPar circulating in the blood, and this knowledge will hopefully be useful in combatting recurrent fsgs in a transplanted kidney.

I have high hopes for the futures of fsgs patients.

[paris]

There are different types of FSGS - some faster, but from my readings and the transplant team, there isn't a direct division of who has the fast or slow developing. 

Anyway --- this hit home and I can only imagine what the original recipient must have gone through.   I knew whan I was transplanted that there was a chance FSGS would return.   But I wanted to take the chance.   Is it possible that the surgeons will rethink FSGS patients and transplants because of the chance of it returning?   When one is in the middle of this, it is hard to emotionally seperate yourself.   

I've shown this to a lot of people in the past 1/2 day and most think this is a marvelous article.   It is truly how close this is to your own situation.

After over 10 years of this, I and the doctors have researched FSGS to death.    Read everything I can find.  One thing I found is that an expert will say this is how it is and the next will have a completely different opinion.   What I do know is that with my experience the FSGS was fast growing to begin with, then with better care, diet, etc it slowed way down and I could keep my 12% function for longer.   

I don't know.  This just felt too real for me.   

[MooseMom]

   Is it possible that the surgeons will rethink FSGS patients and transplants because of the chance of it returning?   

Do you mean "rethink" as in "no"?  I don't think that will be the case.  FSGS really isn't that uncommon, and to just call a halt to tx for anyone and everyone with fsgs just seems over the top.  I suppose there's a chance that with diabetic patients, their underlying disease might not go away, particularly if they don't look after their health and control their bp, so since we know that tx is never a cure for CKD, you might as well stop all tx!

Besides, I still have great hope since the discovery of suPar, and when I go to Madison next month, I plan to ask more questions about this and whether or not they've incorporated this new knowledge into any post-tx protocols.

[wvgirl]

My boyfriend and I saw this on the news this morning. I have IGM, and the transplant surgeon has already told me that there is a very good chance it will go to my new kidney after I am transplanted, but since it is so slowly progressing, the transplant could still last many years.
When we saw this on the news, John, who is an "if you don't think about it or talk about it, the disease will go away" person said "See? Someone got a transplant and now they are feeling great!!"
I, on the other hand said "Someone got a transplant and it didn't work! That's so sad."

[MooseMom]

LOL wvgirl,  You sound just like me, and your bf sounds just like my husband.  Maddening!

Paris, I've been thinking about this article, and something about it just strikes me as odd.  Everyone who has fsgs knows that the disease can come back in a new kidney, but I don't think I've heard of a new kidney being attacked so quickly as the one referenced in the article.  Do you think that the surgeon was jumping the gun?  I mean, your new kidney is showing some initial signs of fsgs, but no one is talking about yanking it out of you, right?  My surgeons have never talked about this sort of thing, either.  Maybe the fact that the donated kidney came from a live donor made it somehow more valuable...do you think that's it?  I mean, if your new kidney is a cadaveric organ, they probably wouldn't think about re-transplant.

Also, another thought came to mind.  I know that fsgs can be inherited and can be seen in more than one family member, but I also know that that is not the case for the majority of people with fsgs.  However, I do wonder if one sibling has fsgs, is it possible that the other sibling (in this case, his sister) might not have full-blown fsgs BUT might have a bit higher level of suPar in her blood, not enought to affect her own kidney but maybe enough to affect it once it was transplanted into him?  Notice that her kidney ended up with someone who is diabetic, not another fsgs patient.  Maybe if Mr. Fearing's next kidney comes from someone outside of his family, it will work better for him.  This may be a load of old twaddle, but there you go.

I would be devastated if I were Mr. Fearing.  Gosh, this article makes him sound so bloody jolly now that he has "discovered" he can travel and merely get dialysis in other places.  How wonderful for him.

[paris]

I think I was just overwhelmed since I could relate so well.   

In my case, the doctor was surprised FSGS was causing scarring at 2 weeks post.  If anyone would have presented the idea that my kidney would be better in someone else -- I would have bolted out the door and said "catch me if you can!".   And I can't imagine a live donor kidney being more valuable than a cadaver one.  Each is equally so precious.

Also, I am in the minority on this subject. Everyone that I have talked to just loves this story.   Regarding a kidney outside the family, I know with a high PRA, a stranger has more chance of matching than a family member (just the opposite with a normal PRA).   

I am struggling with this whole concept.  As I said to someone today, I would love to read the whole medical story. Not just a news reporter feel good article.   I need to let it go. 

Also, my husband was excited to show me this article this morning.  Poor guy didn't know that I had been stewing about it all night! He liked the story too!!   I'll just go sit on my little island and get over it!   

[MooseMom]

Paris, I certainly don't believe that a kidney from a live donor is more "valuable" than a cadaveric one!  I just want to make that clear.  However, I suspect that there are a lot of tx surgeons who value an individual organ over an individual individual, LOL!  And they do yabber on about how a "live" kidney is so much better than even the best cadaveric kidney.  I have to wonder if the fsgs patient in the article had had a good cadaveric kidney (ie, not an ECD kidney), would they have thought about re-transplantation?

What has your tx team said about the fsgs in your new kidney?  Are they concerned?  Do they want to treat it?

I guess I'm in the minority along with you because as a fellow fsgs sufferer, I find this story to be appalling on many different levels.  I find it to be extremely odd that Mr. Gomez, the ultimate recipient, had been on the list for only 4 months, and that's at NORTHWESTERN where I know the wait time is much longer.  And  how is fsgs "reversible" in any organ that has been affected?  This story unsettles me, too, Paris!

[MooseMom]

I found this blog entry over on Renal Fellow Network.  It is fascinating on several levels, one, that the original recipient's protenuria resolved after removal of the new kidney, and two, this seems to indicate that what was thought to be the mysterious cause of fsgs, suPAR, probably isn't afterall. 

http://renalfellow.blogspot.com/2012/05/still-mysterious-elusive-circulating.html

But isn't this bizarre?  This patients fsgs seemed to actually "accelerate" after transplant!  I've just never heard anything like this before.  And the guy who received and KEPT the new kidney is doing well with no signs of fsgs.  This doesn't really provide any answers for us fsgs people, but it IS interesting.