how do you donate a kidney?

[The Wife]

Hi,

Someone I know wants to donate a kidney to someone.  She offered my spouse but he declined.  I then thought, hey, if she's serious, I can find someone, if not a few people.  The Natalie Cole story got me thinking about this.  Anyway, she's A positive, lives in the States and I told her I would find out the what and how of it all.  So, here I am, asking those of you who live in USA -  how, what, when, who pays her hospital stay, what's involved, and what and how long is pre-op stuff? And anything else you can think to tell me.

Since nobody has even contacted my spouse in regards to a transplant, I don't know much about this.  Plus, we're in Canada. 

Thanks for any info you can give me to pass along to her.

[kellyt]

I'll be glad to give you my experience.

First, I gave my potential donors my coordinators name and number and had them call her.  She asked them some questions over the phone and then scheduled them to come in for a blood draw.  Even though your donor knows her blood type, they will test it anyway.  That pretty much starts the ball rolling.  She will go through lots of tests, questioning, etc.  and then provided she passes all of that, she (her test results) will be sent to "the committee" for the decision.  If she is accepted, donor and recipient will choose a date.  Donor pays NOTHING out of pocket for testing or transplant.  That is all covered by the recipients and/or their insurance.  If she lives in a different state they can help her schedule her testing where she lives and have the results sent to recipients clinic.  Insurance I believes pays for them to travel to recipients state for transplant and after that I'm not sure what's covered.  Or maybe the recipient pays for travel and lodging.   Someone else might have that answer for you.

If the donor is found to have medical issues during the testing process they will be notified and declined.  Treatment of said medical issues are NOT covered by recipients insurance.  I believe recipients insurance will cover any problems following transplant for one year so long as the problems are "transplant" related.  Don't quote me on the last part, but I believe that's right.  My donor and my testing donors have paid ZERO out of pocket, and thankfully have had no problems whatsoever.

Good Luck!

[Wenchie58]

I dont know for sure, but I bet she could find a transplant hospital in her area and a phone call would help.  Or the National Kidney Foundation.  Your post gave me goosebumps.  Some people are angels on earth.  I hope she succeeds in donating if that is what she wants.   

[willowtreewren]

There is a site called Livingdonorsonline.org where folks can try to match up with others who are willing to donate or who need an organ. You might pass that along to your friend.

Aleta

[kellyt]

Or maybe someone here might be interesting....   

[okarol]

We have a section called Potential Donors here http://ihatedialysis.com/forum/index.php?board=46.0

[The Wife]

Wow.  You guys are quick.  I knew I came to the right place.  Anyway, she really wanted to give her kidney to LL but with us being in Canada...I don't even know how that works.  And then I thought about how people wanted to donate to Natale Cole.  If someone wants to donate to one person and that doesn't happen, then why not network to find someone else who can use the kidney.  Whatever we can do to help another, right?  Anyone with A positive blood can pm me if you're interested. 

I told this woman about livingdonorsonline but she's asking me questions I don't know how to answer.  I'd love if someone here could get her kidney, if indeed this is something that's going to take place.  Otherwise, I'd tell her to research herself. 

[kellyt]

Send a PM to Monrein.  She's in Canada and just received a kidney from a long distance donor.  However, I think her donor was still in Canada.  Not sure.  But she'll be able to give you some help for sure!

[okarol]

Jenna's donor is a woman we met through Living Donors Online.
If your friend wants to email me or call me, I will answer her questions.
Please send me a PM if you want my info.

[The Wife]

Thanks Okarol.  I've let her know and when I hear back, and if she really is serious, I'll pm you for your information. 

[Des]

There are a few things that you can do before you even recommend someone to phone the coordinator.

The potentional donor must be
1. The some blood group as you the + or - does not have to be the same just the type. But O can donate to anyone. 
2. They must be in very good health.
3. Females must have had all their kids
4. They must not be more than 10kg overweight (unless they are willing to loose it)
5. They must not play contact sport (because after the op they tell them to stop it)
6. They must not be a smoker (or unless they are willing to stop)
7. They must not be on any chronic medication
If you or the donor both have never had any blood transfusions or previous tranplants the changes are much higher that you will be a match than if you have had. 
These are just guide lines but if you feel uncertain the coordinator will answer all the other questions.

[kellyt]

My clinic followed all those guidelines, as well.  If you smoked you had to be "smoke free" for a minimum of 30 days before they would do any testing.  Legally they can't tell you to "stop", but you get the point when they tell you you can't donate if you're a smoker.  They were a stickler with the weight, too.  They will tell you what the max weight is for your height but, again, they can't tell you to lose weight.  Also, I don't know if it's so much a "weight" issue as it is a "BMI" issue.  Check with your clinic.  I'm pretty sure all this is standard.  My clinic was VERY picky and I was told that had I gone through another clinic here locally that they would have accepted my first donor (brother), but I'm very happy with my kidney and results.  I can't complain...now.  I complained a lot during the testing process, however.   

[cariad]

Really, they can't tell you to lose weight legally? Is this true for the recipient as well, or just donors?

At the hospital I now go to, the transplant clinic shares a floor with gastric bypass. In fact, the prescription they gave me is just a form with a dozen or so tests listed, and they check off the ones that they want the patient to have. One of the choices is something like "refer to gastric bypass clinic for consult".  That saddened me, since I think gastric bypass is horribly dangerous.

In my experience, many of these criteria are negotiable, and of course vary from center to center. Some hospitals won't take a donor with a BMI over 35 (very conservative). At my current center, I believe the cutoff is a BMI of 40. It is ridiculously arbitrary (the weight standard), and if it were an issue for me, I would be arguing with that criteria to the bitter end. The scientific research on whether it is actually more dangerous for a donor with a high BMI to donate, as opposed to someone lighter but in similar health, is scarce and inconclusive.

I have never heard that women must be finished having children. I don't know how on earth they could enforce this rule, and at my last eval the surgeon stated that many of their female donors have gone on to have children with zero problems. My husband in on a low-dose of blood pressure medication - it has not been an issue at my current center, but another center was not comfortable with that. That center was willing to discuss it, but we never got that far in the eval, for other reasons. Finally, many centers will not accept donors with any history of mental illness. Understandable I suppose, but if you really wanted to donate and that was all that was holding you back, I would think that would lead to some devastating feelings.

Like Wenchie said, I would suggest your friend call her local transplant center if she wants to do an altruistic donation. I hope she can donate if that is what she truly wants to do. With type A blood, she could donate to other type-As, or type AB (the universal recipients).

[kellyt]

Yes, my coordinator said that exact thing to my brother, who smoked.  "You can't donate if you smoke, but legally I can't tell you to quit."  Same with the weight.

I never heard about the woman must be done having children, but I wasn't at the visits my sis-in-law had for her testing.  I visited her in the hospital, but I was not given any information.  She never said they said that, but they might have.

[The Wife]

Thank you for all of the information.  Whoa, there are a lot of rules but I guess it's necessary.   Makes one wonder if too many rules stop one from donating.  But for those who do, bless their hearts!

[monrein]

My donor was my sister in law who is from Florida.  Our healthcare system flew her here and paid all associated costs to a maximum of $5000.  They also pay for time lost at work but I'm not sure if she's applying for that or not.  She is the office manager for my brother's busy vet practice but they have been concerned about not taking too much from the Canadian system so we've encouraged her to apply for this benefit but not sure what they'll decide.  Her very initial blood work was done in the US and then she flew up here in November for more in depth testing.  She was here for a week then.  In February she arrived here a week prior to transplant and stayed a total of three and a half weeks.  She had a different transplant coordinator than me and met with two different transplant surgeons so she could make an informed decision about laproscopic or minimally invasive open surgery.  She chose open surgery and was very happy with the results of that decision.  Less time under anesthesia was a major factor for her.  She picked the surgeon and he removed and transplanted the kidney.
She felt good about the testing and the care/consideration she received although of course we needed to call occasionally to push for answers about various things.  She had a follow up appointment with the surgeon before going home and her creatinine is almost back to pre-surgery level.  She's ended up a bit out of pocket I feel sure but hopefully not by too much.

If anyone is in a similar situation with regard to being a donor from out of country I could put you in touch with her.

[kellyt]

Thank you for all of the information.  Whoa, there are a lot of rules but I guess it's necessary.   Makes one wonder if too many rules stop one from donating.  But for those who do, bless their hearts!

I honestly think that is part of the plan. 

[Hanify]

They ask the question about having had all your children over here (New Zealand) too.  Also, be aware that the donor people are very careful not to be seen as pushy, so they won't contact the possible donor - the donor has to contact them.  This is to avoid anyone feeling like they were pressured into it in any way.  Tell your friend she will have to do the pushing.  And what an amazing person we all think she is.

[okarol]

There are a few things that you can do before you even recommend someone to phone the coordinator.

The potentional donor must be
1. The some blood group as you the + or - does not have to be the same just the type. But O can donate to anyone. 
2. They must be in very good health.
3. Females must have had all their kids
4. They must not be more than 10kg overweight (unless they are willing to loose it)
5. They must not play contact sport (because after the op they tell them to stop it)
6. They must not be a smoker (or unless they are willing to stop)
7. They must not be on any chronic medication
If you or the donor both have never had any blood transfusions or previous tranplants the changes are much higher that you will be a match than if you have had. 
These are just guide lines but if you feel uncertain the coordinator will answer all the other questions.

Every transplant center has their own rules, but that's a good general overview (except our center does not require #3.) If the donor has a family history of hypertension or diabetes, they may be declined as being at risk for developing these health issues later in life.

[kellyt]

Yes, my clinic would also not call the donor until they were an established "patient".  That is, accepted as a possible donor and in the testing process.

[The Wife]

Monrein - Thanks for sharing.  Great info!

It looks like we'll be able to ask the transplant doctor our questions.   They called yesterday and we have to head to the mainland on Tuesday to meet the transplant Neph and social worker.   

Thanks everyone for all of your info.