The Queens' dilemma

[HipHopQueen]

So I've been thinking about a few things concerning getting the word out that I'm looking for a living donor. My one friend wants me to post on fb and to be funny. I admit I can be funny sometimes but it's hard to be that vulnerable on such a public forum. Then on the other hand I'm trying to live so I need to be as out there as possible. The thing is it really isn't me and I'm not super comfortable with the funny part. I have to stay true to me. I don't want to make the wrong choice. It's so easy on here to be me because the anonymity doesn't allow for judgement if that makes sense. Then another friend has suggested I get on tik tok and do a day in the life sorta thing. Now that scares me but I get where she's coming from. I just a. I don't find myself that interesting and b. it takes away any privacy I have. Do you think we can find donors and keep some privacy? So basically I don't know how open I should be or how much of my privacy to give up. I think I have given a lot. But maybe I need to do more? What are everyone's thoughts about looking for a living donor.

[Bassetmommer]

This situation is not funny. Think of it as a chance to educate people. Start your story off with the facts: That there are over 37 million people with CKD in the United States alone. But only 25, 000 transplants took place in the past year. There is more information you can get. Make sure it is current. The NFK data is way out of date. State also if people are not a match that they still can donate and you will get a kidney.

Then tell you story and why you want a chance. Let people know what your hopes are for the future so they can see what their gift will do for the world.

Do not give out address and phone but something more careful like an email. And be prepared to get scammed and just be wise about it. "The National Organ Transplant Act, which was passed in 1984, makes it illegal to sell or buy human organs and tissues in the United States. Selling organs and tissues is a crime and violators are subject to fines and imprisonment."

You have nothing to lose but so much to gain.

[HipHopQueen in reply to Bassetmommer]

Hey B. Where did you get that fact about 37 million people with CKD..... I'm not sure where to go. I'd like to get facts about black donors and recipients as well. I definitely realize this isn't funny and that was out from the beginning. It's just finding a way to make it resonate with people. I think that was her point. I wouldn't joke about this.

[Bassetmommer in reply to HipHopQueen]

No I know you wouldn't and I think you friend was trying to come up with something that would catch people's attention, nothing malicious. But you have a chance to really educate people about CKD. "Black Americans are 4.2 times more likely to develop kidney failure"

kidneyfund.org/all-about-ki....

This is older info niddk.nih.gov/health-inform...

[Mandelin in reply to HipHopQueen]

I agree with Bassmommer except give your hospital details and how to contact them, don’t give an email for them to contact you. They will try to PM you, but don’t respond. Anyone serious will contact the hospital with the information you gave. I did this, but I didn’t get any real results, just a few scams that PM’d me. There are people who did get results this way though. Good luck.

[horsie63 in reply to HipHopQueen]

you can search the UNOS site and I believe it breaks down by race

[Ziggydoodah]

I am based in Scotland and we don't really look for donors in the same way as you do in America. My consultant did mention asking friends, family, work colleagues and complete strangers! I was horrified. I don't like asking anyone for anything, let alone a body part 😳😳😳 I was close to saying to him, well do you want to donate one of your kidneys, just to show him how awkward it actually is. However you hear some amazing stories of complete strangers offering to donate, so it does happen. My fear of asking a live donor, is what happens if it goes wrong? What happens if they end up with kidney issues a few years down the line. One of the reasons I refused my sisters kind offer. Its a really stressful and daunting thing you are trying to do, so it won't be easy. I would approach it like you would a job application etc. No it's definitely not funny, however one thing that stands out with your posts, is your humour. I have never met you. However I do feel I know you. Maybe give a sprinkling of humour in appropriate places. Sometimes that's the very thing that catches someones attention. Sometimes it's humour that gets you through this blasted journey. What I'm trying to say, is be yourself. Your personality shines through in your posts. I wish you all the best and sorry I can't be of any help. Bassetmommer has great advice as usual 👌 You got this and I hope you get some success. Take care and sending big hugs xx

[Mandelin in reply to Ziggydoodah]

I would just let everyone know what situation you are in and leave it at that. I didn’t ask friends and family, but my family who could got tested anyways.

[Beachgirl32]

I was like you scare to put it out there I don’t even do Facebook . My transplant center gave me a card with

kidneyregistry.org. So I said I will try it you tell your story in your words you can put pictures or not on it if you want to make it more personal . They wil assign a coach to even help you with it. First I had no pictures but then change it . I gave the link to personal friends and family so they could put on their Facebook . I have Instagram so I will put it on there once a month . I had my church put it on Facebook . I can’t put my personal site on here if you want to see it I can dm you . I have had over 899 people check it out. I know a few have tried . You get notice in your email how many people look and how many tried to sign up .

[Darlenia]

Hello HipHopQueen! I think you might get some good answers/direction if you also check with the folks in the transplant group. I do know The National Kidney Foundation provides advice how to approach the matter, and includes a sample letter. See kidney.org/atoz/content/liv... Then there are Facebook groups where members freely share their approach and journey for a kidney. In our town, one lady posted flyers in shop windows and asked the local reporter to interview her, etc. We gave consideration to finding a living donor (children have issues) but ultimately decided to direct our energy to finding a high activity transplant center and pursue a deceased donor kidney including high risk ones in that manner. (Some centers seem to "clean-up" kidneys moreso than others.) My hubby received one at the busier center exactly one year after going on dialysis. He's doing well today. While waiting, we continued to ask friends and family to pass the word that we were interested in transplant and would deeply appreciate anyone who felt inclined to support us with one of their own. I think everyone sorta blazes their trail. It's important to just keep on keeping on. Where there's a will, there's a way. If you're interested in finding a deceased donor kidney, here are two sites which track transplant centers and their outcomes: srtr.org/transplant-centers... as well as txmultilisting.com/wait.htm Crossing my fingers that you'll find success sooner than later.

[horsie63]

I’ve laid it all out there. No one contemplating donating to me should have all the information. I have no shame

[horsie63]

do you have a car?they make decals advertising your need for a kidney just do a search online