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Author Topic: Donor calls it quits  (Read 4920 times)
bountyhunter_ga
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« on: May 18, 2010, 07:49:04 AM »

Hello all, what do you do when you donor calls it quits but not to your face. After 17 months on Dialysis waiting for the donor to loose just 10 lbs.
You know life goes on and teaches us a humbling lesson in people. When all the fan fair is gone and the accolades are forgotten it's somehow comes down to the truth.
I have had 3 more people offer to be my donor since then,one lives in Alaska. one in Florida and the other is just to young. I'm not looking for sympathy from these people but I demand honesty as I would in my real life.
There is nothing I can say to most of you about the offers or the wait. A donor who completes their task no matter how hard or painful it becomes has my blessings. This is not fun for any of us I know, but we must hang in there for the people who do really care for us.
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Bountyhunter_ga
Rerun
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« Reply #1 on: May 18, 2010, 10:02:07 AM »

I think people offer without realizing all that is involved.  You miss work, you may have to travel, "pain" may be involved.  You will get your kidney.... just hang in there.

Sorry that this donor didn't turn out.  Send them flowers and tell them "thank you" for at least thinking about it.

aka..... Kill them with kindness   >:D
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YLGuy
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« Reply #2 on: May 18, 2010, 10:15:03 AM »

I can understand your frustration but I also have mixed feelings about it.  For someone to even consider donating a kidney I think speaks volumes for their character.  Part of the approval process is them learning all that is involved on their end as rerun stated.  It would be hard for them to tell you they were backing out for a number of reasons.  Maybe they just assumed the transplant team would tell you.
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monrein
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« Reply #3 on: May 18, 2010, 11:57:27 AM »

The disappointment is awful and really hard to take but it may not really involve dishonesty as such.  Unless we've actually gone through ourselves with bone marrow or kidney donation to another person it's hard to know the process from that side of the fence.  I'm really sorry though that it's turned out this way for you and I hope that your turn will come soon enough.   :cuddle;

On a side note, the night before our surgery I talked to my donor about hesitations and fears about going ahead and tried my best to reassure her that she could still change her mind even at the appointed hour.  I'm not a hundred percent sure that I'm as good a person as others have been to me.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
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GeeWillikers
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« Reply #4 on: May 18, 2010, 01:48:20 PM »

Waiting 17 months for someone to lose ten pounds?
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tyefly
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« Reply #5 on: May 18, 2010, 06:13:28 PM »

    I hate it when that happens.......   
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  Hello from the Oregon Coast.....

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bette1
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« Reply #6 on: May 18, 2010, 07:50:15 PM »

I've had a donor back out and it was a really good friend of mine.  I tried to understand that it is a huge commitment on the part of the donor and they may have fears that prevent them from following trough.  It is hard to take though because dialysis sucks.
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Jean
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« Reply #7 on: May 18, 2010, 10:50:05 PM »

I am so sorry to hear of this. I am sure you are terribly disappointed, not only with the donor backing out, but not telling you. Some people simply can not face up to the "hard" things in life, which would be telling you about not giving you a kidney. Yours will come, I know it must be hard waiting. But it will come and you will feel a whole lot better about this one.
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YLGuy
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« Reply #8 on: May 19, 2010, 12:00:19 AM »

Waiting 17 months for someone to lose ten pounds?
I've lost 8 in 3 1/2 hours. Ooops, that was dialysis.  (That does sound like a long time for not very much weight to lose)
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RichardMEL
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« Reply #9 on: May 19, 2010, 02:41:07 AM »

gee this is a tough one.

Like you say the mere act to think of donating and to go through at least some levels of testing is a very generous and selfless act; I have had both brother and sister offer and be tested - maybe they feel obligated since they're blood relatives. but it still means so much that they stepped up.

As others have said perhaps the reality of all that is involved came to your donor and they couldn't handle it for whatever reasons - this is one reason that the testing process takes so long - this is quite deliberate to give the concepts and realities of all that is involved to sink in and donors(and recipients) can make an informed decision.

I think if it was me, the thing that would hurt the most is not the pulling out, but the not telling part. Yes, it would be such a difficult conversation to have, but I think if someone makes a commitment to at least be tested, they also owe it to you to be up front and say they have pulled out and why.

Anyway perhaps this is a good thing in the end. Who knows, maybe that kidney wouldn't have been any good for you anyway. I know as well as anyone how this waiting game sucks, and I have some idea of how it feels to have a donor knocked back(since I've had both siblings denied).. it's so not easy.... hopefully when that kidney comes, by whatever method, it's worth the extra wait.

Please don't hold a grudge against the donor that pulled out - to even start testing is a special act, and if they didn't care about you on some level they wouldn't have gone that far.

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
bountyhunter_ga
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« Reply #10 on: May 19, 2010, 05:39:48 AM »

Well thanks all that's pretty much what I feel. I guess some people just can't tell you good by they just slip under the water and are gone.
I hold no grudge but I'm sure I have lost lost a friend.
This is a powerful process to put anyone through and takes a powerful person to go through with it
Once again thank you all for understanding as I know we will all trade the same situations from time to time.
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Bountyhunter_ga
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« Reply #11 on: May 19, 2010, 12:23:28 PM »

 :cuddle; It is sad. I wish people could be real, but for some it's easier to disappear than it is to confront things head on. I hope some day your friend comes back to you, because thats what genuine friends do.
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Stacy Without An E
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« Reply #12 on: May 20, 2010, 01:15:46 PM »

I'm envious of you Bounty Hunter.  Not one person has offered to test for a kidney transplant.

I guess I'm just not worth it.
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Stacy Without An E

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« Reply #13 on: May 22, 2010, 11:47:02 PM »

I fully understand this one as I have had the same experience this week.
One of my friends came forward to offer a kidney and we went through months of tests. Her husband (a devout Christian) was dead against her donating but she is stubborn and said she wanted to do it. My major worry was that the issue would cause a rift in their marriage. This week we were given the go ahead and went to discuss dates for the transplant when she suddenly announced she had changed her mind as she had decided her marriage was more important.
I will admit to feeling disappointed but I am glad I am not going to be the cause of tension between my friend and her husband.
I had a brief moment of feeling insane rage when her husband said to me "I was behind her 100%." Liar! He then made matters worse by telling me that dialysis was no big deal. Grrrrr!
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bountyhunter_ga
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« Reply #14 on: May 23, 2010, 12:22:28 PM »

I just had another person ask about being a donor, I had no choice but to refer this person to my coordinator first.
there is so much involved in being a donor that I can't paint a path of being easy. I can't imagine those of you that have had more than one transplant and not have it work. Any thing I can do to make your life easier please let me know.
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« Reply #15 on: May 23, 2010, 05:33:59 PM »

I'm sorry to hear that your donor wasn't able to lose the weight (I'm assuming) and in the process may have gotten scared.  Be strong.  I agree with Rerun, you will get "your" kidney - the one that is right for you.  Anyone that asks give them your coordinator's number.  That's all you can do.   :cuddle;
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« Reply #16 on: May 23, 2010, 06:29:11 PM »

What a mess.  I am sorry this didn't work out.  I have a donor who is the same blood type and a 5 of 6 antigen match. But, things have changed since he was tested.  I would need to go to a different city and have plasmapheresis and then living donor transplant. The person can't do any of it now---the travel, time off work,  he has family pressures, etc.   So close.  *shug shoulders*   So I really do know where your coming from and it is frustrating.   But, we have no control.  I think that is part of my problem!  I like to be in control!!  I hope a wonderful kidney is just around the corner for you.   :2thumbsup;
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« Reply #17 on: May 24, 2010, 03:04:41 PM »

Sorry about all of this. I hear ya.
My sister would be donor now says she wants to wait till she gets rid of her hemorrhoids before she has any more testing. The thing is, she's had hemorrhoids for 10 years, so when exactly does she think hemorrhoids are going to disappear? Plus, hemorrhoids are not a disqualifier from donating a kidney. This is her own self-imposed issue. Very frustrating for me. I mean, if it's because she doesn't want to donate, how about a little honesty, and not this made up stuff! So in the mean time, my transplant clinic still considers her in the running as a donor and won't be testing anyone else (not that anyone else has come forward, but maybe they would if my sister would just make up her mind one way or another).
Maybe something else will pan out for you when people realize this donor isn't viable. Try to get the word out again.
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« Reply #18 on: May 24, 2010, 07:57:59 PM »

Her husband (a devout Christian) was dead against her donating but she is stubborn and said she wanted to do it. My major worry was that the issue would cause a rift in their marriage. This week we were given the go ahead and went to discuss dates for the transplant when she suddenly announced she had changed her mind as she had decided her marriage was more important.
I will admit to feeling disappointed but I am glad I am not going to be the cause of tension between my friend and her husband.
I had a brief moment of feeling insane rage when her husband said to me "I was behind her 100%." Liar! He then made matters worse by telling me that dialysis was no big deal. Grrrrr!

I strongly suspect that you are not/were not the source of tension in that marriage.  Imagine being married to a man who would tell you that you should not attempt to save the live of another human being.  He wants to control his wife.  It's that simple.  And he knows deep down what a nasty hypocrite he is because he's trying to justify himself.  I hope his devotion will lead him down the path of contrition. 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #19 on: May 25, 2010, 07:51:10 AM »

Stacy,
 I am 100% with you. Not a single person has gotten tested and I have been on the list for 3 years now. I am 27 with a 4 year old daughter. I would of thought someone would of stepped up to atleast get tested for me. Not one person wants to even get the test.

Lisa
I'm envious of you Bounty Hunter.  Not one person has offered to test for a kidney transplant.

I guess I'm just not worth it.
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

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« Reply #20 on: May 25, 2010, 01:42:32 PM »

My family is aware that I have kidney problems, and I plan to send out a mass email to them when/if I get on the list.  But other than that, I refuse to put myself into the position of always waiting for someone to step up on my behalf.  I'm going to just take my chances on the UNOS list.  I feel awful for anyone who has had a possible donor change his/her mind.  I am so sorry this happened, bountyhunter.  I think it is a good idea to have any future possible donors just go through your transplant coordinator.  If you can lessen your emotional investment (can't eradicate it completely, of course) in a particular donor, your heart might be better protected. :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #21 on: May 25, 2010, 08:28:32 PM »

I feel awful for anyone who has had a possible donor change his/her mind.

I feel awful for the potential donor. They would not have offered in the first place without considerable commitment, so to change their mind later, with the inevitable letdown for the potential recipient, must be traumatic for them.
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bountyhunter_ga
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« Reply #22 on: May 26, 2010, 08:15:07 AM »

Thank you all, I'm not upset with my donor at all. Maybe a little disappointed but somehow I understand. After watching one of our mutual friends donate to his brother and how long it took .

 I'm so blessed by all the people in my town of Dawsonville,Ga who come to my fundraiser to support me and my family,I just can't let them down. There is not a day that goes by and no matter where I am someone asks about me.

This whole process has made me so humble and somehow empowered me to want to help others who have not come this far yet.

There is so much power in having faith in people but remember they are only human.  I know my day will come soon as soon as my dues are paid like so many others before me. Have a great day and remember if Mr Pain has a hold on you is must be leaving someone else alone for a while.
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Bountyhunter_ga
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« Reply #23 on: May 26, 2010, 11:37:35 AM »

I'm so blessed by all the people in my town of Dawsonville,Ga who come to my fundraiser to support me and my family,I just can't let them down.
This statement really interests me.  I don't mean to be nosey, but in what way do you fear you might let people down?  What is it that you believe you need to do or be to make sure you're not letting anyone down?

You're such a nice man. :cuddle;
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #24 on: May 27, 2010, 06:04:16 AM »

well I work at the metal detector in our court house and have for the last year and half. They call it light duty, however after almost 40 years in the business as  cop's cop it has been hard to adjust to the calm.

As of late. I have not had very much sleep and it was showing at work, I can be a little cranky.

I know a lot of you don't sleep much but I found a drug  GABAPENTIN 100 MG  in only three days the restless leg and moving from room to room has quit. It may be only temporary but I'm going to enjoy it while I can.

And to answer your question in my business if you act out other than normal and remember I carry a Glock and am a fully trained Cop, A lot of people have donated time to me so I could keep working and I don't care to let them down I hope you under stand. Thanks for your enquiry
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Bountyhunter_ga
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