New member - a little overwhelmed!

[MariainDC]

Hi there,

I have wanted to donate a kidney for a long time, and yesterday I finally decided to do something, after a discussion where I realized that most people only want to donate to family members.

I signed up yesterday on matchingdonors.com, and I have gotten so many messages! I am a little overwhelmed and not sure how to proceed... I know I need to have tests done etc. but I am not sure if I am supposed to pick a person and then test for them, or if I should go in for general tests first?

I have even gotten messages from persons in other countries... How have others gone about this? Have you contacted a local transplant center instead?

Thanks in advance!

[Snoopy]

Hi, MariainDC.
  I had a similar sort of problem.  I decided I wanted to donate (I had nobody in particular in mind, and didn't know how to find a recipient, etc.), so I contacted an organization, who referred me to a local transplant center.  Their coordinator helped move me through the process.  Note: I don't live in the US, so I'm not sure how many of the specifics of my story translate to your situation.  However, in the end I did not have to choose my recipient (for which I'm grateful--I did not want to play God), and things went well.  Probably you could contact your local transplant center, and ask to speak to the coordinator.  Before you do, read archived posts on this board, to help organize a list of questions.
  Be aware, the process of donor approval can take a fair amount of time, and is by no means a sure thing. Before my center even started to consider matching me with a potential recipient, I had to take a battery of tests, and ultimately went through a much longer process.  I matched with three people, each of whom found some other "solution" before I was finally approved (with #3, we had gone through several rounds of hurdles together).  I ended up donating to my fourth match.
   It's quite common to be told to come back after losing some weight, getting your blood pressure down a bit, etc.  Be prepared to be interviewed by several types of professionals about why you want to donate, whether you understand the risks, etc. 
  Luckily, you've come to the right place.  This board is an unbelievably helpful resource.  Beyond that, I'd recommend a lot of patience, and a sense of humor. 
   Good luck with the process, and keep us posted!
       Be well, Snoopy

[cupid]

I agree with Snoopy. I would contact the closest transplant center to you. You will have to go there for tons of testing and it would be easiest to have the procedure done close to your home so you don't have any travel expenses or lodging expenses. The donor transplant coordinator at that facility can walk you through the steps in order to donate.
Good luck and best wishes

[Karol]

You might find a recipient here on LDO as most people post their blood type and location in the "Looking for" section.
We had considered signing our daughter up for matchingdonors.com but it seems very heavy with recipients and light on donors.
Another option for you would be to kick off a chain of transplants by being a non-directed donor through the National Kidney Registry www.kidneyregistry.org - Good luck!

[MariainDC]

Karol, I also signed up with the Kidney Registry, in general I would love to kick off a chain like that but was surprised at the many, many messages I have gotten on matchingdonors.com Will check out the looking for-section here as well.

In general I would be fine with traveling, but I realize it might be easier to do it close to home.

Great!
The National Kidney Registry often has surgery done at a hospital near you, if the center is a participant, and then fly the kidney to the recipient's center.
Many of the folks on NKR and Alliance are people who are hard to match.
Whatever you decide, you will improve the life of a person with kidney failure!

[MariainDC]

Just wanted to add I signed up for Paired Donation and National Kidney Registry, but I haven't done the medical tests for them. I would have to cover them myself, while if I do it with the local transplant center, then they cover all the tests, plus it is a great hospital.

I am also in touch with two people whose stories really spoke to me, but realize that it often doesn't work out.

[MariainDC]

My local hospital has been very nice, I contacted them Monday, they called me back the same day, yesterday I got the paperwork which I sent back right away, and today they called again saying that the doctors approved my medical history! So I am scheduled for tests in four weeks (their first opening was in three weeks but I am traveling then.) The lady I have spoken to has been super nice and I think the place would be a great fit. It is also just 2 miles from my house.

[cupid]

Good Luck to you! And make sure you use the members on here as a resource. We are all here to share our experience and help you.

[Fr Pat]

      There is a considerable advantage to donating through www.kidneyregistry.org or through your local hospital if it is in communication with them. 10 years ago I wanted to donate a kidney, but did not know anyone who needed one, so I let the nearest transplant hospital test me and let them choose the best match from the waiting list, and all went well. Since then--thanks to nation-wide computer data-bases-- groups such as www.kidney registry.org can (if you wish) use your non-directed donation to start off a "chain" of many otherwise impossible transplants. They do this by not just matching you with ANY patient who is a good match, but rather by choosing a patient who is a good match and ALSO has a willing but incompatible donor. That patient receives your kidney, and in turn his/her incompatible donor gives a kidney to someone else. The "someone else" chosen is, again, a patient who has a willing but incompatible donor who donates to the next patient.. And so on down the line. Some of these chains have resulted in 10 or more otherwise impossible transplants. BUT, they need ONE non-diected donor (who gives a kidney but does not need one for a realtive) to kick off the chain.
So, your one donation could result in many transplants rather than just one. Those who do NOT have a willing but incompatible donor also benefit from this by moving higher on the waiting list for deceased donor kidneys as more patients are removed from the list.
     In such "chain" nations you might or might not get to know or meet your recipient, depending on the recipient's desire for privacy.
     So, take your time and continue to get yourself well informed about the options, and also about the small but genuine risks involved in living donation (including death in a few cases). It IS major surgery and does have its risks.
      best wishes,
           Fr. Pat
     

[Snoopy]

  To add to Fr. Pat's comment about risks.  Although I have been fortunate (so far) with my own donor experience, I did think through possible consequences of my donation, including my untimely death, and what that might mean for my wife and kids.  Even after carefully looking at what epidemiological evidence of donor risks existed, and seeing that the risks did look reasonable, I still had to face the possibility of something going seriously wrong.  In fact, just before my donation, I went to a lawyer and made out a will.  Not to be morbid, but it was my responsibility to do what I could to try to organize things for my family.  There's no need necessarily to dwell on unpleasant possibilities (and I didn't, once I'd finished making my decision), but I would not recommend denying or ignoring them either, particularly for anyone with dependents.
  Be well, Snoopy 

[MariainDC]

Thank you all so much for your replies!

Fr. Pat, with my local hospital (which I chose because they are close by and I know they have done chains before) I am signing up as a non-directed donor so I guess that would be like what you did. Would of course be wonderful if it resulted in a chain. I would be fine with not knowing who the recipient is.

I think this approach (registering with my local hospital) is going to be better for me than trying to match up with a recipient myself. I registered with matchingdonors.com, which is great of course, but the response has been completely overwhelming. I am O+ so I could technically donate to anybody, so I have gotten messages from people all over the country and with different blood types. And it seems like a lot of work to register with a bunch of different transplant centers.

Snoopy, thanks for reminding me of the risks too. I am definitely reading a lot about it and thinking it through as it affects my own life.

I am sure this will be a long process and of course, I may not be approved, but it feels nice to have started and have my medical history approved. My tests are scheduled four weeks from today, they might have an opening next Friday, but maybe it is better to wait as I am going on vacation in between. That way I can come back all relaxed and healthy for my tests! (I think I already am healthy, but should be better after ten days of relaxation!) I guess there is no real way to prepare, other than maybe drinking lots of water, and maybe stay away from alcohol for a while before? Or maybe that doesn´t make any difference at all.

Thanks again all!!

[MariainDC]

Now I just got a call from the other local transplant center, which can do my tests much sooner - they would do an initial appointment on Tuesday and then lots of tests the following week... This came about through matchingdonors.com, so I would test for a specific person to begin with, and then if that didn't work, just remain on the list as a non-directed donor.

Not sure what to do, the people in both places are really nice. The second place told me that if I want to test for this specific recipient, I should go with them  naturally, but if I wanted to remain non-directed, I could go with either place. They collaborate closely. And I live right in the middle of the two places, 2 miles to one, 2 1/2 miles to the other...

[audrey12]

This must be so overwhelming for you!  Do whatever makes you most comfortable.  And make that sentence your mantra.  You first, always.  Go with your gut.

[Fr Pat]

     You have a nice variety of choices available, so it must be hard to decide. For me (10 years ago) it was easier as I had just the one opening.
     One thing to keep in mind: if you decide to test for one particular recipient remember that this may get that person's hopes up and he/she might be disappointed if it did not work out. Also, I think you could ask whether donating to that person would start a "Chain" or would end with helping just that person. Take your time, and proceed with care. But do keep in mind that the patients who seek a personal donor at "matchingdonors" or elsewhere face an emotional roller-coaster as hopes for a donor rise and fall. So be cautious in making an offer unless you feel pretty sure that you will follow through.
     I'm glad you are getting good advice and learning more.
         Fr. Pat

[MariainDC]

Fr. Pat, you are so right, it would not be good to get a person´s hopes up. I only answered the person that I was in the area and that the two hospitals collaborate, they are actually part of the same transplant center, so that there might be shared lists etc. It has been hard to get information on the difference between the two places; one is larger and does more transplants, but their main surgeon also does transplant at the other hospital... Both coordinators seem very nice, although I really hit it off with the one in the second hospital...

Although I am itching to get started, I am leaning towards going with the hospital I contacted first (non-directed) even though I would have to wait four weeks to start initial testing. It is summer so there has been a lot of happy hours and BBQs and other things, and even though I don´t drink a lot, a few weeks of no drinking, healthy eating, and vacation would probably be good! (I am healthy as far as weight, blood pressure, etc. go and have never had any medical issues, but want to be at my best for the tests...)

Does anybody know if things usually move faster with a specific recipient than registering as a non-directed donor? I guess it all depends really...