Off The Cuff Donor Offers Really Hack Me Off

[BASSMAN]

I have had kidney disease for 20 years and I am now down to 20 percent.  Everyone who knows me, knows I have kidney disease and are aware of my GFR.  I talk about it freely with friends and family, and at work.  Well, even aquaintences.  I have had several people offer up a kidney off the cuff,  like it was nothing and I know darn good and well that they are not really serious about it.  I think it is some kind of thing with them to throw it out there to show their support for me and to make them feel good about themselves or something.

When the time comes,  I will hit everyone of them up about it and then we will see how serious they really are.  I am well prepared to be disappointed by them. 

My wife has offered but we have not done any testing.  I know she is serious about it. I have a lot of concerns about getting a transplant.  I am not 100 percent sure that I really want it or if I want my wife to do this.

Anyways, just a rant.  I wish people would really consider what they are saying when they say it.

[okarol]

I had a similar experience. I think most people really don't have any idea what's involved. If you WANT a transplant you can let people know the need is there, and if they step up -  give them the transplant coordinator's information. If they're serious they will follow through. Some people have no one that ever offers. Maybe you'll be one of the lucky ones.

[Rerun]

I had a friend say "I'd give you a kidney if you were dying"  I've been on dialysis for 4 years.  What part of dying does he need to see?

Dumb Ass!!   

[RichardMEL]

I had a friend say "I'd give you a kidney if you were dying"  I've been on dialysis for 4 years.  What part of dying does he need to see?

Dumb Ass!!   

I think this is the other side of the "but you don't look sick!" coin.

I see that sort of stuff all the time. Like I see someone I haven't seen for a few months and they explain "oh! you look so well!" well that's relative I guess....

I think a lot of people equate a terminal illness differently. I reckon if we had shaved heads or bandages all over us it would be different somehow - because it would be more obvious to the blind out there that something "serious" was wrong. It's amazing how many people you try and explain it to and I think don't quite grasp that this thing is a terminal disease. It's not something *I* like to hilight though because I feel like then I'm sounding like I want pity or charity or something ("oh look at me I have this terminal disease! pity me!" NO THANK YOU!).... that's the last thing I want... but it does seem that quite some people don't understand.

It's like I was talking to some guys at work today who were eating bananas and I said that eating bananas could well be deadly to me.. I am sure they thought I was joking!

[paris]

My husband is always reminding me how many of his relatives have said they would give me a kidney.  Have any of them called the transplant co-ordinator? No.  An off the cuff offer isn't a real offer until they make the call and get evaluated.  You don't win a medal for mouthing the words "I'll give you a kidney" .  You have to back up your words.    Guess I needed to rant. also! 

[Goofy]

I've received several offers but like others, no one has actually gone beyond "offering" except one of my friends. 

She started the testing and I think she got scared because they told her she had to loose 30 pounds to get her blood pressure down.  She started a diet but only lost about 12 pounds and that was the end of that. 

[kellyt]

I understand what you're saying, Bassman.  But it was the "friends" that just sat there and looked at me and never said anything that really got to me.  You can tell the serious offers from the "off the cuff" offers and you take them for what they are worth, but when you have people that you are close to just shake their heads and say "Well, I'm praying for you", that just baffled me.

Good luck to you.  With you GFR at 20, hopefully you will hold there for a while.  I held in the 20's for years.  My advice to you would be let your wife test if she is serious.  If she is accepted that doesn't lock her in to donate.  The donors surgery is a little intense, but my donor did just great and continues to do great.

My husband tested for me and I was so excited to hear that he was a great match, etc.  They bumped him due to high calcium in his urine and in the end I was very happy he wasn't my donor just because both of us being down for 2-3 weeks (really, that's the donor's time down) would have been a little difficult.  He's not one to sit and relax and that would have driven me to the brink of insanity!  Things like that are good to consider.  Unless you have an adult child who would be willing, and I'm sure they would, to come in for a few weeks to help out.

We're all with you through this.  Ask questions.  Feel free to PM me if you have transplant questions.  I'll do my best to help or point you in the right direction. 

[BASSMAN]

I understand what you're saying, Bassman.  But it was the "friends" that just sat there and looked at me and never said anything that really got to me.  You can tell the serious offers from the "off the cuff" offers and you take them for what they are worth, but when you have people that you are close to just shake their heads and say "Well, I'm praying for you", that just baffled me.

Good luck to you.  With you GFR at 20, hopefully you will hold there for a while.  I held in the 20's for years.  My advice to you would be let your wife test if she is serious.  If she is accepted that doesn't lock her in to donate.  The donors surgery is a little intense, but my donor did just great and continues to do great.

My husband tested for me and I was so excited to hear that he was a great match, etc.  They bumped him due to high calcium in his urine and in the end I was very happy he wasn't my donor just because both of us being down for 2-3 weeks (really, that's the donor's time down) would have been a little difficult.  He's not one to sit and relax and that would have driven me to the brink of insanity!  Things like that are good to consider.  Unless you have an adult child who would be willing, and I'm sure they would, to come in for a few weeks to help out.

We're all with you through this.  Ask questions.  Feel free to PM me if you have transplant questions.  I'll do my best to help or point you in the right direction. 

Thank you for your offer and I will take you up on it!

[*kana*]

I'm sorry that you are hurt by their comments.  I'm sure they have thought about it more then you think since you freely talk about it.  I going to guess and say when the time comes there will be atleast one of those people that will really do it for you.  It might not be a negative thing in the long run, you never really know.   I dont think they are trying to be mean.

My story is different.  My extended family and many so so friends have NO clue that I have no kidneys and on Dialysis.

[kellyt]

I forgot to mention that what I did with the "offers" I just said "I'll be glad to give you my Coordinators name and # and you can call at your liesure if you have questions or would like to schedule your testing".  Semi serious people will at least take the information.  Once/If they contact the Coordinator and they are accepted to test the Coordinator/Clinic will not contact you regarding their testis - not even with family members.  Doctor/Patient confidentiality and all.  They will not tell you they accepted or denied them.  They will not tell you if the tester backed out or anyting.  You will get all your info directly from your testers.  That's how it was at my clinic and I'm sure at most all other clinics.  They gave me no info on either of my brothers or my husband.  All very hush hush. 

Anyway, back to my original statement, give them the name and number and just leave it at that.  God willing you will receive a phone call in the near future from someone that says "Hey, we need to pick a date to do this!"  That's the call I got from my sis-in-law!  Took a while to  sink in, but it was an amazing phone call to say the least!