How bad did it get.

[okarol]

Since you are listed you should definitely work toward getting a preemptive transplant. These tips may help you find a living donor https://www.rsnhope.org/rsn-blog/how-to-find-a-kidney-donor/ and here's more about preemptive transplants https://www.sciencedirect.com/science/article/pii/S0041134522000938

I've been trying...these studies that say there are all of these 'altruistic donors' out there are quite frankly full of crap.  Saying and backing up words are two entirely different things.
If I'm lucky, my half-sister-in-law will get over the final hurdles and be a donor - but if she doesn't, that's OK too. I wouldn't want her to unnecessarily sacrifice her health just to give me a kidney.

I found donors (previous strangers) for my daughter twice and just recently one for my sister. It took a lot of effort and the best luck I had was writing on our car windows and running ads on Facebook. Someone tweeted the back of our car and it was retweeted 9000 times. Then the local news picked up the story. We got 2000 emails. Yes, luck plays a part too.

Full credit to you for this.  No, I'm definitely not putting this kind of effort into it.  I just can't  be 'that person' I guess.  Begging's beneath me.

If I die sooner as a result, I do.  This country's circling the drain anyway.

I know it's hard to ask for yourself, as I mention in the article. That's why I helped my family members. I think they would all still be on dialysis as they were too sick and overwhelmed to mount a campaign. I never begged, lol! I just shared their story. But if you have no one to help, I am sorry.

[kristina]

Dear okarol, I am very sorry that you feel like that because your comments do sound very harsh indeed, especially since receiving a kidney-transplant does not only depend on the efforts of family members but mainly on the assessments, efforts, planning and some particular medical thinking of medical staff, nephrologists and nurses … and it also depends on the medical assessments and particular needs of patients etc., it also involves lots of medical skill and help again from doctors, nephrologists and nurses etc.

Are you really sure your family members would still be on dialysis if you would not have mounted a campaign on the Internet? Would not doctors and/or nurses have helped your family members? How about kidney-transplant waiting lists? Of course, there is no need to “go on begging”, because there are surely some non-medical people out there who perhaps could be convinced through humanitarian appeals and plights on the Internet etc. to part with one of their body-parts i.e. kidneys? Especially since there are so many reports of donors suffering terribly after having parted with one of their kidneys (especially the left kidney)?

But, it does come over as pretty unbelievable to imagine that our society can now use the Internet, and especially, that the Internet can now be used as a vehicle for  “searching to exchange/receive etc. particular body-parts of living human beings” etc. It just sounds very raw and a bit “Frankensteinish” and comes over as extremely shocking indeed and I am still hoping to have misunderstood your comments?
Best wishes from Kristina.

[UkrainianTracksuit]

I am not going to speak for okarol, but I do believe that her comments were misunderstood.

One has to understand that those needing a kidney (or those seeking an altruistic living liver donor) are (mostly) already on dialysis and have gone through the proper transplantation work-up like any and all patients that have been approved for transplant.

The doctor, nurses, medical team, etc have done their part for approval and signing off on the paper work to get someone listed. As I understand it, people are listed on the same list as those awaiting a deceased donor, but if they find a living match (which doctors will tell you are preferred), it could really move things forward quickly. There are some locations that people wait 7 years or more for that call, but if they can find a willing donor, they can go through the approval process and a surgical date can be scheduled. So, potentially, yes, someone could remain on dialysis for years longer if they did not find a living donor match.

At the meeting with my transplant coordinator (when I needed to sign off on forms), I was advised that I would be listed on the deceased donor list, but in the meantime, I needed to select a "spokesperson" to ask around family, friends, acquaintances, whomever, about becoming a living donor. Some friends that once said "sure" ghosted (avoided me) so I didn't pursue finding a living donor too much. And anyway, I eventually pursued a double organ transplant, so it was best to wait on the deceased list.

That said, there is a push for people to find their own donors. And yes, this has medically-minded people approval. Here is a "How to" fact sheet from a national organization here: https://kidney.ca/Kidney-Health/Living-With-Kidney-Failure/How-to-Find-a-Living-Kidney-Donor

Here is a heartwarming story that swept the nation because it was hockey related: https://www.goodmorningamerica.com/wellness/story/hockey-fan-asked-kidney-homemade-sign-game-found-59337896

This article discusses how "rich" and "cute" people have a leg up on the rest of us average adults because people are more drawn into their stories. For example, I have a family member that got tested to donate to a child that needed a kidney, but never tested to see if he'd be a match for me, because the kid was cute. Even raised funds for them.  It was for this reason I never sought out a living donor...no one would want to donate to an Eastern European woman that looks like ringleader of a Balkan crime gang though I too was a (not as cute) sick kid. And hundreds of people came forward to get tested to see if they were a match to a billionaire.
https://www.thestar.com/news/gta/2016/10/23/organs-for-the-rich-and-cute-should-patients-campaign-for-their-own-donors.html

It all comes down to the kindness of strangers who want to do something for someone. It happens.

One must unravel the idea of "searching to exchange/receive body parts" over the Internet because that takes one into some potentially dark territory that is illegal, and not what looking for a living donor is about. For example: https://www.dailymail.co.uk/news/article-11461933/Mexican-woman-killed-organs-flying-3-000-miles-Peru-meet-man-met-online.html

Also, if we use the term “Frankensteinish”, we contribute to the misinformation and disinformation about organ transplant because a lot of people still hold some really odd thoughts about the procedure. I have been called Frankenstein. I have been called "Living Dead Girl" by people that simply do not understand.

Anyway, in this long meandering post, I just want to say, that yes, people do search out living donors and it is a lot of work to organize. If people want to do that and are great at campaigning, God love'em! There are not doing anything wrong and transplant programs advise that this is an avenue to investigate.

Some of us can't or don't feel comfortable doing it. Others can and pursue it. Good luck to them.

I mean this all in the nicest way too! But I probably just confused more things...

[fightingPKD]

"I needed to select a "spokesperson" to ask around family, friends, acquaintances, whomever, about becoming a living donor. Some friends that once said "sure" ghosted (avoided me) so I didn't pursue finding a living donor too much."

Thanks for sharing, UT!

Yeah, this is my experience as well.   

My wife is all I have, and I don't think she's the ideal person to 'sell' something on anything.  Although if the roles were reversed, I would sell for her like nobody's business - we are two different people and personalities!   Meanwhile, I would be a subpar caretaker for her.  Oh, I'd learn and improve, but I'd NEVER be as good as her at it!
She's an incredibly loving person who has no issue helping me with home hemo when I start.  She was the one who stitched me back together bak in 2004 when I needed a binder to keep my guts from falling out for months.   

I also think there's a small part of her that is in denial that I'll ever get to dialysis.  Not so much these days, but you have to understand, I've been on the transplant list for almost 3.5 years now.  It's been nearly 4 years since I first hit eGFR 19.  I'm still plowing along, although the road is certainly narrowing for me.  So, until maybe a month ago, the harsh inevitably of dialysis has always been 'sometime', you know?
My nephrologist and PCP don't know of a single person who's survived w/o it longer than I continue to.  I'm down to eGFR 8 and other than phos I am OK.  I'm going to begin taking phos binders - hopefully buy myself another couple months

I put out notifications and updates on facebook every few months, and I have some moderately influential friends in my local community who help 'share' the word, but neither are healthy enough to be a donor.  I have had 4 or 5 people ALL fail out for health reasons (typically, either overweight, history of other kidney problems).  Having friends in the age group I am (about to turn 50) means finding someone is tougher, because of this. 
I have one half-sister-in-law going through the donor process now, but she needs to improve her blood pressure.   It is POSSIBLE she may qualify in a couple months.  We keep our fingers crossed, but I am chronically pragmatic/realist about life.

[plugger]

Reading this over got me thinking about the site I keep up with a page about living donors.  I was wondering what people thought of it:   Find a Living Donor!  Do I need to update it?  As I've stated, I've been spending most of my energy lately on Reddit's diabetes subreddits, but occasionally feel the need to go back to my roots here.  And I'll mention my daughter was in a clinic back in 2000, but has a transplant now.

[fightingPKD]

Part of why I actually JUST switched hospitals from University of Maryland to Johns Hopkins, is because UMMS really doesn't have any paired donor programs, besides their own local.  Hopkins has multiple besides their own.

Not that I even have an unmatched donor, I don't...but I've got a good chunk of time accumulated now, IF I do find someone who isn't a blood match, it should really expedite my search for (in this case) a paired donor.

[okarol]

Dear okarol, I am very sorry that you feel like that because your comments do sound very harsh indeed, especially since receiving a kidney-transplant does not only depend on the efforts of family members but mainly on the assessments, efforts, planning and some particular medical thinking of medical staff, nephrologists and nurses … and it also depends on the medical assessments and particular needs of patients etc., it also involves lots of medical skill and help again from doctors, nephrologists and nurses etc.

Are you really sure your family members would still be on dialysis if you would not have mounted a campaign on the Internet? Would not doctors and/or nurses have helped your family members? How about kidney-transplant waiting lists? Of course, there is no need to “go on begging”, because there are surely some non-medical people out there who perhaps could be convinced through humanitarian appeals and plights on the Internet etc. to part with one of their body-parts i.e. kidneys? Especially since there are so many reports of donors suffering terribly after having parted with one of their kidneys (especially the left kidney)?

But, it does come over as pretty unbelievable to imagine that our society can now use the Internet, and especially, that the Internet can now be used as a vehicle for  “searching to exchange/receive etc. particular body-parts of living human beings” etc. It just sounds very raw and a bit “Frankensteinish” and comes over as extremely shocking indeed and I am still hoping to have misunderstood your comments?
Best wishes from Kristina.

Sorry, I am very surprised, I don’t understand how you think my comments are harsh. It’s just our reality. The waiting time in Los Angeles is 10 years for a deceased donor kidney for a type O recipient. At 65 years old my sister might not have lived long enough to get one. With my daughter having 100% antibodies, they said she could wait 20 years. As it was it took 5 years on dialysis to find a living donor for my daughter and 7 years on dialysis for my sister. We were fortunate that 2 people were willing to donate in swaps to save them. No hospital, social worker, transplant team or anyone else helps find a living donor. And tons of people die every year waiting for a deceased donor. I am grateful for the gifts they received. It happens every day, strangers saving others. So sorry if you’re offended.

[okarol]

I am not going to speak for okarol, but I do believe that her comments were misunderstood.

One has to understand that those needing a kidney (or those seeking an altruistic living liver donor) are (mostly) already on dialysis and have gone through the proper transplantation work-up like any and all patients that have been approved for transplant.

The doctor, nurses, medical team, etc have done their part for approval and signing off on the paper work to get someone listed. As I understand it, people are listed on the same list as those awaiting a deceased donor, but if they find a living match (which doctors will tell you are preferred), it could really move things forward quickly. There are some locations that people wait 7 years or more for that call, but if they can find a willing donor, they can go through the approval process and a surgical date can be scheduled. So, potentially, yes, someone could remain on dialysis for years longer if they did not find a living donor match.

At the meeting with my transplant coordinator (when I needed to sign off on forms), I was advised that I would be listed on the deceased donor list, but in the meantime, I needed to select a "spokesperson" to ask around family, friends, acquaintances, whomever, about becoming a living donor. Some friends that once said "sure" ghosted (avoided me) so I didn't pursue finding a living donor too much. And anyway, I eventually pursued a double organ transplant, so it was best to wait on the deceased list.

That said, there is a push for people to find their own donors. And yes, this has medically-minded people approval. Here is a "How to" fact sheet from a national organization here: https://kidney.ca/Kidney-Health/Living-With-Kidney-Failure/How-to-Find-a-Living-Kidney-Donor

Here is a heartwarming story that swept the nation because it was hockey related: https://www.goodmorningamerica.com/wellness/story/hockey-fan-asked-kidney-homemade-sign-game-found-59337896

This article discusses how "rich" and "cute" people have a leg up on the rest of us average adults because people are more drawn into their stories. For example, I have a family member that got tested to donate to a child that needed a kidney, but never tested to see if he'd be a match for me, because the kid was cute. Even raised funds for them.  It was for this reason I never sought out a living donor...no one would want to donate to an Eastern European woman that looks like ringleader of a Balkan crime gang though I too was a (not as cute) sick kid. And hundreds of people came forward to get tested to see if they were a match to a billionaire.
https://www.thestar.com/news/gta/2016/10/23/organs-for-the-rich-and-cute-should-patients-campaign-for-their-own-donors.html

It all comes down to the kindness of strangers who want to do something for someone. It happens.

One must unravel the idea of "searching to exchange/receive body parts" over the Internet because that takes one into some potentially dark territory that is illegal, and not what looking for a living donor is about. For example: https://www.dailymail.co.uk/news/article-11461933/Mexican-woman-killed-organs-flying-3-000-miles-Peru-meet-man-met-online.html

Also, if we use the term “Frankensteinish”, we contribute to the misinformation and disinformation about organ transplant because a lot of people still hold some really odd thoughts about the procedure. I have been called Frankenstein. I have been called "Living Dead Girl" by people that simply do not understand.

Anyway, in this long meandering post, I just want to say, that yes, people do search out living donors and it is a lot of work to organize. If people want to do that and are great at campaigning, God love'em! There are not doing anything wrong and transplant programs advise that this is an avenue to investigate.

Some of us can't or don't feel comfortable doing it. Others can and pursue it. Good luck to them.

I mean this all in the nicest way too! But I probably just confused more things...

Thank you