dissapointment

[from.my.abdomen.to.yours]

So we got the results back and my recipient's blood produces antibodies against mine, so it's a no-go that way. However, we will be participating in the paired exchange and while I am a little bit disappointed that we do not match directly, all I want is for her to have a kidney and to get a second chance.

So, more questions: Does anyone else have any experience with a paired exchange? Is anyone participating now? How does this work? How long does it take/how long did it take for you? She doesn't have much time left...the doctor gave her 2 years (she was on dialysis for 8 years before her first transplant) before she's just too sick and it's been 6 months already...I am just really scared that exchange wont happen fast enough...

[ohtobeahayes]

Hi!  I'm sorry to hear that it didn't work out directly for you to donate. I started a paired exchange chain, and I know that there are others on the board who have participated in one also. The amazing thing about paired exchange is that at least 2 people will get kidneys.  At LEAST.  That's awesome news for some very unsuspecting people!    Usually a chain is started when an anonymous donor donates, and is matched (by choice) with someone in the paired exchange pool.  In this scenario, the chain continues on until there are no more matches within the paired exchange pool. the last donor is matched with someone on the "regular" waiting list, and the chain is completed. There have been other instances were two couples match each other and it works out that way.  You would donate to someone, and their loved one would donate to your loved one. Sometimes it can take a little longer because the paired exchange pool is smaller than the regular pool.  It took 2 months for me to get matched, and my recipient had joined the paired exchange pool only 2 weeks earlier. Keep us updated!!!!  Good luck!  And thank you for your beautiful heart! Nicki (my enter button doesn't work, I'm not normally so paragraph deficient)

[livingdonor101]

If you haven't already, I encourage you to research how your particular transplant center does pairs/swaps/exchanges/chains. Some programs keep everything in-house, limiting the swaps/pairs to their facility's patients or donor/recipient pairs. Some are part of a larger exchange consortiums, which generally results in quicker and better (higher quality) matches. The problem is, there are multiple exchange registries in the US, which varying degrees of results. So, ask a lot of questions, don't take 'no' for answer, and while you're at it, research the transplant program and choose your surgeon carefully (more on that here: http://www.livingdonor101.com/choosing_a_transplant_center.shtml).

I understand your concern for your recipent, but it's imperative you look out for you first. She has an army of specialists to care for her, the system sorta leaves the donor out there on their own.

good luck
Cristy

[from.my.abdomen.to.yours]

@ohtobeahayes, I've didn't even think about it that way, thank-you for that perspective! It made me feel a lot better! I'm just worried that it will take longer now...

Also @livingdonor101, I live in Canada. So here we have public health care (for better or worse, lol) so I do not get to pick my surgeon or my transplant center. That being said I am very lucky to be in contact with a wonderful coordinator and I've only heard good things about the hospital in general so I am feeling good about how I am being, and how I will be, treated. Also, the living donor program here in Canada spans the whole country so the pool is quite large. The only issue would be if my recipient and I know of a possible exchange pair from outside of Canada.

Thanks for the advice! I really appreciate you guys taking the time to help me out!

[WilliamLFreeman]

from-my-abdomen-to-yours,

All the best wishes    / vibes    / etc. to you, your intended recipient, your to-be-determined paired recipient, & that person's willing donor!   

Bill

[james]

Hi from-my-abdomen-to-yours,

I participated in a Domino Paired exchange in 2009, it was the second domino performed in Canada.
the wait time was approx. 5 months. I got tested to donate to a family member and it turned out I was unable too do so. My TC suggested the Paired exchange.
It worked out great for us.

[Terry]

Hi

I am a "living donor wannabe" from Canada. About 9 years ago my wife donated to our son, Ian, who was 28 at the time. He has been a diabetic since he was about 2 and his kidney failure was the result of the diabetes. Four years later the donated kidney began to fail and he went back on dialysis and the transplant waiting list. My sister-in-law was a potential match but when she got right to the final test found out she needed both of her kidneys.

A couple of years ago we heard about the paired donor exchange program. Exciting news! As part of the initial testing Ian was told that he would need heart surgery before it would be safe to have another kidney transplant. Scarey! The heart too has been damaged as a result of the diabetes. Ian has decided rather than face the risky heart surgery he will remain on dialysis. A tough decision.

SOOOO, a couple of years ago I started trying to find out if I could donate to Someone Somewhere. There was not a program in place in our province at that time but I was told that there was something in the works. This past November I had an interview with my transplant co-ordinator and got started on the testing process. The co-ordinator is excellent! She said that it was possible that the testing process could be completed within six months. Tests were going well and it looked like I'd be ready for the national match run in March. Got a call from the co-ordinator a few days before the match run saying that the transplant center needed some more blood work and time to review test results.

Hopefully everything will be good for the next run this summer. It's a process. If I do get to donate, it's possible that I won't know who the recipient is. I'd like to know, but that has to be a mutual agreement for a number of reasons.

Bottom line. If I can donate, Someone Somewhere will have a shot at a better quality of life.

[Sarah in Maine]

Hello, I'm sorry to hear about your dissappointment.  But as others have noted, the paired exchange program has some great benefits.  As to the waiting time, you will find that there is no exact answer because there are too many variables that could make it hard for one of you to find the right match.  Also, note that the "domino" and "daisy chain" extended pair donations that some people talk about are an extension of the simple 4-person "pair exchange," so that might add to the delay.

My mother is located in Massachusetts, so when we realized I could not donate to her because of our blood type, I looked into the New England Program for Paired Kidney Exchange (nepke.org).  It took me a while to convince my mother to go along with the idea, but once we did, it was five months from stage zero until they had the full health work-up on me to get our data INTO the exchange database.  (Sounds like you may be farther along in the evaluation process, so hopefully most of that delay will be behind you.)  We entered the program and were part of the January 2008 computer run -- talk about suspense!  With NEPKE, they run the computer program approximately once every 4-6 weeks to look for new viable pairs.  None found in January.

(to be continued...is there a size limit for posts on this new board, or is my computer just acting up?)

[Sarah in Maine]

(continued)
One of the other aspects that might make it longer is your recipient's blood type.  My mother is Type O -- the universal donor.  Alas, that means that she also can only RECEIVE from another Type O.  But because Type O DONORS will always pass the first level of matching with their desired recipient, I am of the opinion that there are fewer Type O donors in the paired exchange databases (note: no scientific data to back that up!).  It is not zero, because some Type O donors will have a recipient who does not match for other sensitivity issues, but still it seems common sense that there are fewer of those.  We were in the active paired exchange database for about 6 months without finding a matching pair.

My plan with the paired exchange had been to keep my mother OFF dialysis, but she went on in February 2008 - just after the first computer run.  They gave her a temporary dialysis access, so my goal then turned to getting the transplant before they decided to give her a permanent access/fistula.  The temporary access should have been a 3 month or lessthing.  Luckily, she had fewproblems and it lasted the 11 months until she got her transplant -- but that was pretty astounding.

One option that the New England region has, but not all US regions have (and I do not know about Canada's policy) is what is called a "list exchange."  (to be continued again...)

[Sarah in Maine]

(continued - part 3! ...can't get me to shut up!)
In a list exchange, after the pair has been unsuccessfully in the paired exchange database for a certain amount of time (I think it was 3 months), and if the recipient's health qualifies (one of the criteria was having not had any prior transplants), then you can be considered for a "list exchange."  In this process, the willing donor (me) donates to someone at the top of the deceased donor wait list at my mother's center.  By doing that, my mother gets "bumped" to almost the top of the deceased donor wait list (pediatric patients always stay at the tippety top), ensuring that she will receive a deceased donor kidney much much earlier than otherwise.  There are definitely some moral issues with this process -- that is why it is not available in all US locations, and I talk about some of it in my PDF journal that is posted in the "Experiences" section of this LDO website. 

Once you are eligible and decide to do this, the wait is not too long.  In September we decided to go this route, so we scheduled my donation for late October (part of that delay was my own personal scheduling issues). I donated October 28 and my mother got the call for her deceased donor kidney on November 26 -- a four week wait instead of the 3-6 year wait she would have faced if I didn't donate. 

I would be more than happy to talk with you more about my experience, either in questions on this site or if you email me.  Good luck!  -- Sarah

[from.my.abdomen.to.yours]

Thank-you all for your replies! And @ Sarah, I just might take you up on that! I have some more blood work on Wednesday and a meeting with the donation coordinator so I will probably have a ton of new questions after that!