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Message |
BD
Member
Username: Bd1
Post Number: 94
Registered: 03-2009
| | Posted on Sunday, October 23, 2011 - 11:26 am: | 
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In the first year, I was reallllly open, I would go on and on, in details too. But now 3.5 years later I rarely mention it unless someone directly asks me about it.
Kidney Transplant 3/08, 21 yrs old
IgA Nephropathy |
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Cora
Member
Username: Cora
Post Number: 390
Registered: 06-2007
| | Posted on Sunday, October 23, 2011 - 11:33 am: |
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I mention it, but only during certain times. I don't just blurt it out, but if it's appropriate, then I mention it. For example, if someone asks me where I work, I readily admit that I am retired on medical grounds, that my kidneys failed. I then give tribute to my cousin for her selfless deed in donating to me. I think I bring it up more because of her, and want people to be aware of what a wonder it is. Most folks don't think about things like living donation or signing organ donor cards. So if it comes up, then I'll give her the credit and educate someone as well.
Cora
Dx with T1 in 1966
Kidney tx in Minneapolis 2002
Pancreas tx in 2008 |
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CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 5045
Registered: 03-2008
| | Posted on Sunday, October 23, 2011 - 01:03 pm: |
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I don't have problems in letting people know, especially if I am in the gym and I see that someone else needs motivation. I just don't come right out and talk about it though.
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Jason
Member
Username: Jason
Post Number: 140
Registered: 02-2010
| | Posted on Sunday, October 23, 2011 - 02:45 pm: |
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I'm open about it and will talk about it when I can. I think its a good opportunity to start the process of getting people to think about being a donor and to see what good it can do. In fact in our town someone ended up being an anonomous donor in part because of hearing about it and talking with my wife and I. |
Alinds
Member
Username: Alinds
Post Number: 269
Registered: 09-2010
| | Posted on Sunday, October 23, 2011 - 04:58 pm: |
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Well, immediately after transplant I told just about anyone who would listen! It was so new to me and very much on my mind. now it has been just over a year and I mention it MUCH less frequently. I will still talk about it if it seems relevant though. |
John M
Member
Username: Jam1107
Post Number: 147
Registered: 12-2006
| | Posted on Sunday, October 23, 2011 - 08:24 pm: |
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Like others, I don't go out of my way to bring it up, but I have no problem talking about it -- as a matter of fact, I prefer people to know.
At my job, I can tell that people who don't know think it's strange when I don't attend certain meetings or go on certain business trips (always crowd-related -- I already lost one transplant and am on higher doses of immuno drugs this time around). I'd rather they know the reason than create a reason of their own.
I know other transplant recipients may think it's not a good idea to let your coworkers know -- but in my case, I prefer to tell people.
John
Pancreas alone transplant 4/13/04; rejected 2/07; removed 5/31/07.
Second pancreas transplant received 11/11/08.
NY Presbyterian/Cornell Medical Center, NY |
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still alive
Member
Username: Carl
Post Number: 59
Registered: 01-2011
| | Posted on Sunday, October 23, 2011 - 11:14 pm: |
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Depends where i am and people around me - certain friends and certain people at work know so they don’t feel like i am being a bastard if i am MIA. I used to be quite at work about it but as i get older and health detirates I had to make it known. I do bring it up if i feel transplants are brought into a discussion in a negative way (organ trafficking/myth of less care to individual if organ donor in critical accident etc) - some people seem shocked more than anything as they say "You dont look like you have had a transplant" I dont really see the point in most cases its just like blurting out "i have cancer or inset other chronic illness name here" just makes people treat you differently even if they try not to |
keith elliott
Member
Username: Keith_elliott
Post Number: 195
Registered: 11-2010
| | Posted on Monday, October 24, 2011 - 04:10 am: |
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I tend to let my wife and docs know what is going on but don't bother other folks with it (apart from on renal forums) as I reckon most folk generally don't want to hear about other folks woes (but ask to be friendly) .. better to talk about fun stuff.
I tend to just tell people who ask that I'm doing great when they ask and if they press me on it I tell them my creatinine levels versus how they were immediately post tx (ie unchanged so far after 7 years) and that in time things will slide but luckily just not yet.
take care
Keith |
Rita
Forum Leader
Username: Rita
Post Number: 784
Registered: 06-2003
| | Posted on Monday, October 24, 2011 - 01:45 pm: |
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If you know me and chances are you know about my transplant. If people ask how I am doing I say fine, unless they are close and are really asking. I do not tell people I have had a transplant unless there is some particular reason that the topic comes up.
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Arne
Member
Username: Arneb
Post Number: 2
Registered: 10-2011
| | Posted on Tuesday, October 25, 2011 - 05:47 pm: |
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I am more apt to talk about my transplant than the fact that I am back on dialysis. I sometimes feel that somehow I've let my donor down, even if the kidney lasted over 20 years and the pancreas is still going strong.
Kidney/pancreas tx May 1991
Kidney failed August 2011 |
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Staggerin' Dave
Member
Username: Rodeonm
Post Number: 22
Registered: 07-2011
| | Posted on Thursday, October 27, 2011 - 08:05 pm: |
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In most circumstances I think it is best to be humble unless the timing is right. However, if donor families knew nothing about organ donation then they probably wouldn't have donated the organs that saved many of our lives.
For the first 12 years following my transplant I was a huge and outspoken promoter of organ donation. I spent many, many days and nights talking to whoever would listen. I recruited other like minded recipients and encouraged them to promote donation as well.
Then several things in my life conspired to make me less outgoing. First was the death of my daughter (whose organs I donated) followed closely by the deaths of several of the very people I had recruited to spread the word. This was more than I could bear. Finally, I began to get very cynical about the "Transplant Games", a group that I was very close too. Originally, many of the participants were very active in promoting organ donation, as that was the premise of the games. Over time it became a contest and a vacation for participants who seemed to care little about organ donation. Eventually, I abandoned that group. I still keep my fingers in it but it seems as though winning medals and state affiliate awards are the main goal of the participants. I suspect that is why NKF decided to abandon it as well.
But I digress, I will be retiring tomorrow and will give my final talk on organ donation at work. I pray that people will listen.
Cadaveric Kidney Transplant (08/87)
Hepatitis C (08/87) from kidney tx
Organ Donor dad {(Virginia, 15) 02/93}
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Jack
Member
Username: Jack3172003
Post Number: 9
Registered: 11-2011
| | Posted on Friday, November 11, 2011 - 08:23 pm: |
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I am extremely open and honest about it. I have been that way from Day 1. I do volunteer work for organ donation in NJ; so naturally the more people I can make aware the more people may be apt to register as donors to reduce these horrible growing waiting lists. If people only knew the things we went through to get our transplants they might not think life is so bad after all. Without your health what do you have? I am just grateful to have gotten another chance at life. |
Nataciara
Member
Username: Nataciara
Post Number: 8
Registered: 11-2011
| | Posted on Friday, November 11, 2011 - 11:13 pm: |
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I'm pretty open about it but don't go out of my way to bring it up. Most of my coworkers know and respect me enough to let me know if they have a cold or just aren't feeling well that day.
Happy 3rd anniversary John M. |
John M
Member
Username: Jam1107
Post Number: 149
Registered: 12-2006
| | Posted on Saturday, November 12, 2011 - 10:07 pm: |
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Thanks very much, Nataciara. I normally don't make a big deal of it, but I am very grateful for the gift -- and your kind words.
Take good care,
John
Pancreas alone transplant 4/13/04; rejected 2/07; removed 5/31/07.
Second pancreas transplant received 11/11/08.
NY Presbyterian/Cornell Medical Center, NY |
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Rob C
Member
Username: Rob_c
Post Number: 271
Registered: 09-2007
| | Posted on Friday, November 18, 2011 - 12:56 pm: |
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I used to be much more open about it but after suffering discrimination due to my condition at my former place of employment I will never mention it to an employer or anyone I work with if I ever go back to work again.
With human resources Nazis constantly trying to cut employee healthcare costs by any means possible it is just best for them not to know. you have anything wrong with you. I was singled out for layoff based on my condition, sued the company and got a large settlement.
With healthcare costs going through the roof some companies, especially smaller firms just figure it is cheaper to get rid of chronicly sick employees and risk a lawsuit than paying the high health insurance premiums. |
Rob C
Member
Username: Rob_c
Post Number: 272
Registered: 09-2007
| | Posted on Friday, November 18, 2011 - 01:12 pm: |
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I used to be much more open about it but after suffering discrimination due to my condition at my former place of employment I will never mention it to an employer or anyone I work with if I ever go back to work again.
With human resources Nazis constantly trying to cut employee healthcare costs by any means possible it is just best for them not to know. you have anything wrong with you. I was singled out for layoff based on my condition, sued the company and got a large settlement.
With healthcare costs going through the roof some companies, especially smaller firms just figure it is cheaper to get rid of chronicly sick employees and risk a lawsuit than paying the high health insurance premiums. |
Krystal
Member
Username: Krystal
Post Number: 6
Registered: 04-2011
| | Posted on Wednesday, November 23, 2011 - 02:36 pm: |
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I love talking about my tx to people because I don't think many people understand how important organ donation is until they have met someone who has been through it. That being said, I never criticize anyone who is against organ donation since it is their own choice. I find, and maybe others can relate, that since I am in my early 20s I have to explain my tx a lot more. I rarely drink and only enjoy partying with my closest friends who know about my tx. When I meet new people, like at school, whom I'm around often because we share the same classes I let them know only because at some point they will see me taking my medications and also because I developed steroid induced diabetes and taking insulin before meals. It's hard, I'm proud of who I am but I don't want people to define me based on having a tx...however I consider it a huge part of my life so yes I do talk about it.
Has anyone ran into conversations with people about organ donation? I actually have quite a few times with people not knowing I have had a tx, and surprisingly majority of them have been against it. I have no idea how to respond half the time! I don't want to make them feel terrible by saying "I have a transplant and I'm alive because of it" but part of me wants to make light of it's benefits. I think it's so easy to disassociate yourself from something you know nothing about.
p.s. It makes me so happy to see how many people openly talk about their tx! |
