I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
November 24, 2024, 07:54:34 PM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Transplant Discussion
| | |-+  Kidney Transplant Swaps - News story
0 Members and 5 Guests are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: Kidney Transplant Swaps - News story  (Read 7181 times)
okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« on: October 13, 2006, 11:51:40 PM »

Mix, Match, and Switch
Kidney exchanges between strangers are helping to ease the organ shortage and could save thousands of lives

By Josh Fischman
Oct. 8, 2006 - U.S. News & World Report


BALTIMORE-Chantal Adamson is bouncing up and down on her bed with excitement. That's hard, since she's tethered to an IV. Plus the small patient bed in her room at Johns Hopkins Hospital isn't exactly a trampoline. But Adamson, a 29-year-old with kidney failure slowly dying on dialysis, can't sit still just before 7 o'clock this September morning. "Oh, I can't wait. I've been sick for so long, for three years," says Adamson, who lives in Deland, Fla. "And now I'm finally going to get a kidney."

Tammy Williams, resting in another bed one floor away, is a lot calmer. That's no real surprise, for the 40-year-old from Petoskey, Mich., isn't sick and isn't waiting for an organ. She's the donor. "Donating is such an easy thing to do," says Williams. "It's just a 3-inch incision." Williams had seen a letter from Adamson's mother pleading for a donor to save her daughter's life on a website called Matchingdonors.com. "It really touched me," says Williams. "It's like seeing someone in a burning building-you want to rush in and help them." Months of phone calls and E-mails between the two, sharing details of their lives and their hopes, cemented the relationship, the decision to travel to Hopkins for treatment, and Williams's determination to donate.

But Williams isn't giving her kidney to Adamson. She's giving it to Melanie Balhatchet, a 35-year-old from Spanish Fort, Ala., with a degenerative kidney disease who also depends on a dialysis machine for survival. Williams doesn't know Balhatchet's name or almost anything else about her. What she does know is that she and Adamson are a bad match: Adamson will reject her kidney. And she knows that if she gives her kidney to this woman she's never met, the woman's husband-a bad donor for his wife-will give his healthy kidney to Adamson, who matches up well with it. "Lock and load, let's go," Williams says, sinking back on her pillow.

Kidney swaps like this, called paired exchanges, are a new and growing trend. Instead of waiting years on the United Network for Organ Sharing list for a compatible kidney-as 67,962 people currently are-someone with kidney failure and a willing but incompatible donor can ask a hospital to find them a pair in similar straits, and the hospital can mix and match. (Liver swaps have been done in South Korea but not yet in the United States.) There have been 109 such swaps since Rhode Island Hospital in Providence did the first one in 2000. "It's a great concept," says surgeon Mark Aeder, director of kidney transplants at University Hospitals-Case Medical Center in Cleveland, which has done 12 swaps. "You don't want your patients sitting on a transplant list. You want to help them," says Aeder. "And they do better with a transplant than on dialysis." Plus, live kidneys simply work better than kidneys donated by dead people. The failure rate for kidneys from cadavers, five years after a transplant, is about 30 percent. But that rate drops to about 16 percent for live transplants. Swaps can increase the number of live transplants sixfold for people with hard-to-match blood or tissue types, according to a study published last year in the Journal of the American Medical Association.

The evidence has become so compelling that at the end of August, UNOS proposed a plan for a national swap system. There is, however, a small hurdle. Kidney exchanges may violate a federal law against selling body parts. "We're very excited about exchanges," says Bill Lawrence, director of patient affairs at UNOS, "but we can't move ahead until Congress clarifies the law." And Congress, consumed by the run-up to the November elections, hasn't leapt at the chance to bring clarity yet. In the meantime, hospitals have begun to band together to create larger pools of pairs on their own.

The biggest nonlegal barrier standing between patients and a new kidney, and the one that kidney swaps aim to surmount, is biological: the immune system. That intricate defense network comes armed with antibodies-molecules that mark other cells for destruction-and after identifying a body part as a foreign object, the system tries to kick it out.

One reason that body parts appear strange to the immune system is blood type. There are four types: A, B, AB, and O. If they don't match between donor and recipient, the organ may be rejected. Body parts also need to be in sync on tissue type. "There are six common 'flavors' of tissue," says Robert Montgomery, chief of the transplant center at Hopkins. "And if you have antibodies against one of those flavors, it's very hard to find someone who will match you." More than one type of antibody, or just high levels of one type, make a match almost impossible. It's called being highly sensitized. People develop sensitivities against other tissue types because they are exposed to them. Mothers, for example, get exposed through pregnancy-the fetus carries genes from the father, after all-and anyone can get exposed through blood transfusions.

Most hospitals do not have enough expertise with sensitivity to try to work around it. So these cruel immunological twists are why many loved ones, willing to sacrifice almost anything to save the life of a father, a sister, a wife, or a best friend, remain sidelined, unable to donate a needed organ. Paired donors are a way around this. "Instead of having just one recipient and one mismatched donor, we can put them into a whole pool of donors and find them a better match," Montgomery says. These are not perfect matches, he adds, but the level of antibodies is low enough that they can be controlled by immunosuppressive drugs and a treatment called plasmaphoresis that filters antibodies out of the blood.

Separation. It's a little after 8 a.m. Montgomery is in his scrubs, preparing to enter Adamson's operating room. Down the hall, another surgical team is already working on Williams. And in an adjacent hospital building, two more teams are starting surgery on the Balhatchets. "We keep the pairs completely separate and anonymous," says Kathy Dane, one of the hospital's transplant coordinators. "We really don't want them getting entwined in each other's lives before the surgery, because that could lead to pressure on someone to go through with surgery even if they have some doubts."

At 12:45, Montgomery has Shane Balhatchet's kidney in his hands, preparing to implant it into Adamson. At 1:30, Keith Melancon, another surgeon, is holding Williams's kidney, getting it ready for Shane's wife. "This looks good. The arteries look nice and healthy," says Melancon. By 4 p.m., both kidneys have been sewn into their new homes, are flushing pink as blood flows into them, and have begun doing what kidneys do best-making urine-something that Adamson's and Melanie Balhatchet's kidneys haven't done for years.

The math of making matches gets better as the pool of donors and incompatible recipients gets larger. Hopkins has perhaps 75 such pairs in its pool at any one time, and by mixing them around it might be able to find good matches for about 40 percent of them. Increase the pool to 250 pairs, and the rate climbs to 50 percent, according to theoretical models developed by Sommer Gentry, a mathematician at the U.S. Naval Academy in Annapolis, and her husband, Dorry Segev, a transplant surgeon at Hopkins. At 5,000 pairs, the match rate hits about 55 percent. "It just gets better because there are more possible combinations," says Segev.

The most combinations would be possible in a national system, of course. It could be optimized to produce the highest number of tissue matches, closest ages between donors and recipients, and the least amount of travel time for all involved.

But there is no national matching system. And one reason is a phrase in a 1984 law, the National Organ Transplant Act, which says that exchanging organs for "valuable consideration" is a criminal act. The intent was to prohibit the sale of body parts. "Some people worry that the promise to donate in return for another organ fits that 'valuable' category," says Lawrence, "so we need that cleared up." Earlier this year, Democratic Sen. Carl Levin of Michigan introduced a bill to eliminate that murk. "It doesn't remove or alter any current provision" from the law, Levin says. It simply adds a line "which states that paired donations do not violate it." The UNOS proposal letting the federally funded agency utilize its waiting lists, its data on donors and recipients, and its computers to take kidney swaps national can't kick in unless Levin's legislation passes.

David Goldfarb is already moving to create a bigger pool without government help. "People are getting sick and dying while waiting," says Goldfarb, the head of kidney transplants at the Cleveland Clinic. "But we're not the federal government. We're the private sector, and we can try and do this without federal resources." Enter the Paired Donation Network, which has grown out of an Ohio group that started four years ago with eight hospitals, including Goldfarb's. This year it's expanding to 18 states and more than 100 hospitals. "We have multiple institutions sharing data, covering a wider area. We've done calculations that show if we draw donors and recipients from a pool of 30 million people, we'll get the best matches," says Goldfarb. "Plus, if you have lots of hospitals, you have hospitals closer to the patients." So far, hospitals in this group have done 18 transplants through pairing. Another consortium, the New England Paired Kidney Exchange Program, has 14 hospitals, which have done 17 transplants.

Adamson and Balhatchet are the 33rd and 34th patients to receive transplants at Hopkins. After a somewhat uncomfortable night, all four patients were resting better the next day. Shane Balhatchet even sneaked out of his room to visit his wife. "She looked beautiful," he says. "It was so good to see her."

By Friday, three days post-surgery, Adamson was making plans to visit Williams, who she feels is her real donor, in Michigan. On Saturday night, Williams met the person who actually got her kidney, Balhatchet, for the first time. "It was exciting. We hugged, and we talked about our families," says Williams. "I wasn't quite prepared for the emotion. It feels weird, too, that we're all connected now." It is a strange way to come together, she says, but a good one.

And last week, the Paired Donation Network turned on its computers to start its largest match run ever, on 160 donors and recipients. With more matchmaking among strangers, incompatibility-at least in terms of organs-may become a thing of the past.


original post : http://www.usnews.com/usnews/health/articles/061008/16organ.htm
.................
Karol




EDITED:  Moved post to correct thread - Goofynina/Moderator
« Last Edit: October 14, 2006, 12:26:05 AM by goofynina » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Sara
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1557


« Reply #1 on: October 14, 2006, 04:29:29 PM »

Nice how they say, "slowly dying on dialysis."   ::)
Logged

Sara, wife to Joe (he's the one on dialysis)

Hemodialysis in-center since Jan '06
Transplant list since Sept '06
Joe died July 18, 2007
kitkatz
Member for Life
******
Offline Offline

Gender: Female
Posts: 17042


« Reply #2 on: October 14, 2006, 09:21:45 PM »

I noticed that too.  I been at it eight years. No one ever wrote a story about me! How come only transplants get recognized as news worthy!  We dialysis patients should be given some recognition for long term survival.  How about it people?  There should be a loud cry from those of us stuck on dialysis for years to be recognized!!!  Three years, "dying on dilaysis"! What bullshit!
Logged



lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Zach
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4820


"Still crazy after all these years."

« Reply #3 on: October 14, 2006, 09:34:28 PM »

Three years, "dying on dilaysis"! What bullshit!

Again, you can thank the National Kidney Foundation for that myth.

 :beer1;
Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Rerun
Member for Life
******
Offline Offline

Gender: Female
Posts: 12242


Going through life tied to a chair!

« Reply #4 on: October 14, 2006, 10:42:41 PM »

They have to sensationalize it to make the news.  If people think you are slowly dying on dialysis they may be more apt to give a kidney up.  What ever works!!  I think this swap thing is great and what pisses me off is that anyone in their right mind would pick out that phrase in the 1984 act and stop this whole process.  ANY kidney is a priceless commodity, so trading one kidney for another is a different value? (Dumb Asses)  Still gets to me that everyone gets paid but the donor.
Logged

okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #5 on: October 15, 2006, 05:02:22 PM »

I know there are long term dialysis patients that do okay and would not consider
themselves "dying on dialysis" - but there are also many people for whom it is
slow death - they often feel sick and lethargic and trapped, too. As my daughter
put it, she feels as though her life is "on pause" until she can get a transplant.
Perhaps patients do better on PD than hemo, which she can only do because she
had abdominal surgery for a bladder augmentation (to fix what damaged her
kidneys to begin with) so PD is not an option for her. We have also been exploring
short stay hemo - perhaps at home. Not sure if it will make a difference.
~Karol
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Amanda From OZ
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1038


« Reply #6 on: October 15, 2006, 05:25:48 PM »

i know I've gone through this before, but living life on dialysis is not a option that should be decided   (unless there is a medical reason for not having one). I respect many of your decisions not to. But i agree with okarol and Jenna, dialysis places your life on hold. i don't believe i could ever live a happy life on dialysis. Even  if the transplant might not be for life,  its worth a hell of a shot.
Logged
kitkatz
Member for Life
******
Offline Offline

Gender: Female
Posts: 17042


« Reply #7 on: October 15, 2006, 06:35:08 PM »

Excuse me, but if you are pausing your life while on dialysis, then you are wasting time!  Dialysis helps you live.  You may be tired and you may have treatments to go to every day or week, but I really think, you had better dialyze to live, not live to dialyze.

Okay I am off of my soapbox now! :D :grouphug;
Logged



lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
coravh
Full Member
***
Offline Offline

Gender: Female
Posts: 221

« Reply #8 on: October 15, 2006, 06:55:50 PM »

Excuse me, but if you are pausing your life while on dialysis, then you are wasting time!  Dialysis helps you live.  You may be tired and you may have treatments to go to every day or week, but I really think, you had better dialyze to live, not live to dialyze.

Okay I am off of my soapbox now! :D :grouphug;

I was one of those people "dying on dialysis". I didn't get good flow and wasn't dialysed very well. I had tremendous pressure problems when taking fluid off, and so my pressure did not return to anywhere near normal for about 36 hours.  Even with adjusting my dry weight. I often had to wait for 2 hours at the clinic before they would let me go with a blood pressure of 85/55.  I was so restricted with my diet because I was sensitive to potassium that I was actually malnourished. They gave me stuff to combat this, but most of it was not that effective.

I understand where you are coming from on your soapbox, but in some cases, like mine, it is just not possible to live well on dialysis. I only had one day per week where I was physically well enough to go out and do stuff. Thank God and my cousin for my transplant.

Cora
Logged
Zach
Elite Member
*****
Offline Offline

Gender: Male
Posts: 4820


"Still crazy after all these years."

« Reply #9 on: October 15, 2006, 09:15:50 PM »

And last week, the Paired Donation Network turned on its computers to start its largest match run ever, on 160 donors and recipients. With more matchmaking among strangers, incompatibility-at least in terms of organs-may become a thing of the past.

original post : http://www.usnews.com/usnews/health/articles/061008/16organ.htm
.................
Karol

160 donors and recipients?  I'd like to see this happen for the sake of the patients.

But it sounds more like media hype by the Paired Donation Network.  It doesn't sound too practical.  Are you really going to have 160 people flying around the country?  All you need is a few people to back out at the last minute, and the whole house of cards falls apart.      :-\
Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #10 on: October 15, 2006, 11:27:53 PM »

These types of swaps involve a lot of coordination. The reason our hospital in Los Angeles doesn't do them is
because it takes a great deal of logistical planning. The only way to ensure comfort with all involved is to have
4 operating rooms and 4 surgical staff ready simultaneously so that the operations take place at the same time.
If one person even gets a cold, or their labs are questionable, the surgery gets postponed.
~Karol
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Rerun
Member for Life
******
Offline Offline

Gender: Female
Posts: 12242


Going through life tied to a chair!

« Reply #11 on: October 16, 2006, 02:25:18 AM »

It is still worth a shot.  If those people who volunteered Jenna a kidney would just give a kidney then someone else may give Jenna a kidney in order that their partner would get one too.  I've read where if you just swap then the transplants can take place at different times.  My gosh with all the air transpertation today what is a few hours in the air to make this happen.  It doesn't seem that complicated to me.
Logged

coravh
Full Member
***
Offline Offline

Gender: Female
Posts: 221

« Reply #12 on: October 16, 2006, 04:50:49 AM »

These types of swaps involve a lot of coordination. The reason our hospital in Los Angeles doesn't do them is
because it takes a great deal of logistical planning. The only way to ensure comfort with all involved is to have
4 operating rooms and 4 surgical staff ready simultaneously so that the operations take place at the same time.
If one person even gets a cold, or their labs are questionable, the surgery gets postponed.
~Karol

In a lot of cases the operations do not take place at the same time.  That way, one partner is always healthy enough to take care of the other one post surgery.

Cora
Logged
waitlisted
Jr. Member
**
Offline Offline

Gender: Male
Posts: 76


« Reply #13 on: October 16, 2006, 08:03:29 PM »

I would like to see this happening more. In my transplant center they ask in donor application form if you are interested about paired donation, but when I asked about it on the nephrologist consult, I was told that they don't do paired transplantations. The main reasons I was given is the needed logistics&coordination, privacy issues making the work between hospitals more difficult and also the ego-issue between the hospitals.
Logged
Rerun
Member for Life
******
Offline Offline

Gender: Female
Posts: 12242


Going through life tied to a chair!

« Reply #14 on: October 17, 2006, 02:38:17 AM »

If transplants were free I mean really FREE......not just the donor giving......there would be no transplants.

I can see where they would not do paired transplants because one hospital wouldn't get as much money or something stupid.  Who cares about the patient anymore?
Logged

billable
Jr. Member
**
Offline Offline

Gender: Male
Posts: 55

WWW
« Reply #15 on: October 18, 2006, 07:44:36 AM »

These types of swaps involve a lot of coordination. The reason our hospital in Los Angeles doesn't do them is
because it takes a great deal of logistical planning. The only way to ensure comfort with all involved is to have
4 operating rooms and 4 surgical staff ready simultaneously so that the operations take place at the same time.
If one person even gets a cold, or their labs are questionable, the surgery gets postponed.
~Karol
Karol, we have similar situations.

I am A+  and my wife is O.  She is listed at Vanderbilt and they were not initially interested in doing a swap.  After much discussion, we fould an A+ recipient that had an O donor.  Like you pointed out in another post, they didn't need us, but when presented with the idea, they were more than willing to help us.  Then they found that I have multiple kidney stones in both kidneys.  I can't donate to anyone.

Anyway, the part that I wanted to tell you is that if you donate anonimously, they would put your daughter on the top of the list for the next matching cadaveric donor.  Not as good as a direct donation, but it would get her off of dialysis in a matter of weeks rather than months or years.  You might see if your center would offer the same.  If not, like you said, you do what you have to do.

Good luck with everything and please let me know how things are going.

Bill
Logged

www.caregivertalk.org
Online Support Group
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!