i do think you rock, but … *

I do, truly I do.  Giving up a little bit of yourself to ‘save’ the life of a stranger is amazing and I would have joined in if anything had happened to Blokey prior to our transplant.

I do resent the fact that you’re somehow superior to me, or better in some way.

It also irks me that maybe you don’t want to know how the recipient is, and you feel no responsibility.  The fact that you don’t want to know who they are because you don’t want to begin judging them (I’m sure you didn’t mean it to sound like that) is worrying.

Did they explain to you that it’s a treatment not a cure?  Are you aware of the percentage of transplants that reject within the first year?  Do you have any understanding at all of what it is like to live with a transplant, to have these feelings day in, day out, to know that one day (maybe tomorrow, maybe in fifty years) it will begin to reject/fail?

And those first few months after the transplant may not all be plain sailing; there will be hurdles to jump over, the kidney may not take immediately and may never work as well as it was expected, there is the kerfuffle of getting the meds right and the anxiousness about ending up on haemoD again or getting a cold …

You give a wonderful, life-changing, gift but you don’t have to live with the aftermath. You do an amazing thing, suffer through some pain, go back to work, get pats on the back, give interviews on tellyvision and to newpaper-men (do you get paid for that?) and then you continue with your life.  Maybe you raise awareness of the need for live (and dead) donation.  I’m sure that sometimes you wonder how your kidney is doing, where it is, the adventures its enjoying …

Perhaps you just move onto the next Big Project, the next Big Pat on the Back.

You are brilliant, but perhaps you need to live with what happens next … just for a day, if you really want to gain a little bit of an understanding.

(* this is for the non-directed altruistic donors who seem to say the wrong thing, to those who seemingly do it only for the accolades, for those who appear not to really care or understand … it is not written to all non-directed altruistic donors.)

(Day 311, NO DIALYSIS!!!)

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2 comments

  1. Interestsing comments. I dontated a kidney to a stranger. Did I want to know who it went to ? Know I did not. Why? Well I would hate for that person to feel beholden to me in any way, as I know has happened in the USA when recipients and donors have met. Do I want to know how they are doing? yes of course and since donating 2 years ago I have regularly asked and the hospital has got the recipients hospital to ask the recipient permission to allow that information to be given to me. The information that comes back is “Recipient is doing great”. Even 2 weeks after donation i was told “Recipient is doing great”. Each anniversary and at Christmas I raise a glass, say a prayer for my recipient and family. I may not have met my recipient, and really do not want to, that is not why I donated, last thing I want is their gratitude but I have met many recipients including two who have just had their “live” kidney transplant. You meet a variety of recipients and hear their stories while awaiting appointments, in hospital recovering, and later while trying to educate people on live donation as well as the need to sign the donor register. Those recipients are not that much different to my recipient. Yes I have done interviews on TV and radio, did I get paid? No I did not. I got transportation supplied or paid for upon production of a receipt. Why am I so keen on doing publicity? Well here in the UK the NHSBT is not allowed to advertise for non directed donors. The only way for people to know about this scheme is for either recipients or donors to speak out about their experience. Unfortunately very few recipients (unless they have met their donor) volunteer to speak about how much it meant to get a live organ, so it is left o us donors to speak about why we donated etc. But to be perfectly honest, I dont really care whether donors live with the aftermath of their generosity or not. the main thing is someone got a live kidney which is a lot better than a cfadaver kidney. they are off the list and the next person stands a better chance of a kidney being offered. Why should any donor understand more what it is like for the recipient after they receive their kidney? What donors do understand is what life is like before transplant and that is horrifying enough. If life was cosy and a party pre donation, we probably would not have donated as no need to actually help them if life is a ball pre donation. But it is not. So I still do not understand why we should live the aftermath of donation. is it meant to make us feel even more glad we donated? Or make us feel???? We KNOW that our kidney is only going to last so many years but those years have to be better than a life on dialysis. Yes we ARE told that recipients have to take anti rejection drugs and to be regularly monitored and can reject the kidney at any point. We would also like to think that the recipient would try and amke good use of those years off dialysis and enjoy their life while they can. If they don;’t, well then they don’t. Maybe recipients should know more first hand about us donors. Not all that is said publicly is all that is inside us. the main thing is that someone is getting another chance at enjoying their life. Someone, for whatever reason, has giving up one of their organs, I see no reason for them to then have to know step by step exactly what the recipient is going through. Is the donor meant to suffer emotionally knowing the recipient is struggling? Or??? you mention th pat on the back more than once. I can tell you now that all the donors I have met have hated the pat on the back (at least UK ones, have to say a lot of USA ones seem to revel in the praise). This is one reason a lot of us will not ever give interviews or tell our neighbours or even tell most of our family or friends what we have done. I kept quiet for nearly a year before someone at the hospital let slip who I was and soon I had press on my doorstep. I had not told my sisters or parents or neighbours or cousins or even my best friend. Only my husband and children (all grown up) knew as it was no ones business but mine. Once word got out, then I felt I coudl further help other potential recipients by telling my story and it worked. I know my story isnpired at least four other people who went on to donate. Should they know all the intimate details of their recipients recovery? no I dont think so and I am sure the recipient would not be that insistent that they did. Any recipient who feels the donor should know how the recipient is struggling with their new kidney – needs to reassess their opinions.

    1. Thanks for your feedback. I’m not entirely sure you’ve read the rest of this blog so you may not be aware of my experience with CKD or live donation. If you had you would know my circumstances and that I’m a very private person and this distorts my own view of the world; I don’t understand some people.

      As I parenthesised it was not my intention that this be aimed at the majority of non-directed altruistic living donors; it came about from just a couple of the interviews I’d read and seen where the donor came across as being very much of the ‘I’ve saved a strangers life, I’m brilliant, what’s next!’ brigade, with little thought of the whole picture. I completely realise this could have been distorted by the media channels who love to sensationalise, but it did get me thinking that if you don’t LIVE with something it’s very difficult to completely understand both it *and* the consequences (good or bad) of what you’ve done.

      Oh, and I’m in the UK too, btw. I just want to respond to a couple of things.

      “Well I would hate for that person to feel beholden to me in any way …”

      Good point, not one I had considered.

      “Those recipients are not that much different to my recipient.”

      Out of curiosity, how do you know? Not all people with CKD suffer in the same way or for the same reasons. Dialysis is easy for some, a nightmare for others. Some find sticking to a renal friendly diet and restricting their fluid intake to be such a chore they just can’t do it, whilst others have no issues.

      “I dont really care whether donors live with the aftermath of their generosity or not. the main thing is someone got a live kidney which is a lot better than a cfadaver kidney. they are off the list and the next person stands a better chance of a kidney being offered. Why should any donor understand more what it is like for the recipient after they receive their kidney?”

      When referring to the aftermath I was thinking more along the lines of the whole experience, not that the recipient is now living a wonderful dialysis free, fluid restriction lifted, renal friendly menu out of the window, life off the list. I was including the experience of everybody involved; not just the recipient but their family and friends too. There are as many downs as there are ups and the downs can be as ‘horrifying’ (your word, not one I would use, speaking from my own experience) as pre-transplant.

      “the main thing is that someone is getting another chance at enjoying their life.”

      Absolutely.

      “Is the donor meant to suffer emotionally knowing the recipient is struggling? Or???”

      Not at all. My point is that with non-directed donation the donor is able to walk away and doesn’t have to share the frightening moments as the kidney attempts to take hold, or not.

      “This is one reason a lot of us will not ever give interviews or tell our neighbours or even tell most of our family or friends what we have done.”

      Have you read the other entries in this blog?

      “I know my story isnpired at least four other people who went on to donate.”

      And that is commendable.

      “Should they know all the intimate details of their recipients recovery? no I dont think so and I am sure the recipient would not be that insistent that they did.”

      I agree; I am positive the recipient would want to just get on with life after their ‘horrific’ experiences pre-transplant. The suggestion that all the intimate details should be known is absurd; but it is the recipient and their families who have to deal with any negative effects and it is important that non-directed donors completely understand that there are negative effects.

      “Any recipient who feels the donor should know how the recipient is struggling with their new kidney – needs to reassess their opinions.”

      This is what truly aggravates me. It’s almost as though you’re saying that as long as the kidney is doing its job then all is good, but the moment someone struggles you’re turning your back on them. If a recipient were to read that it would surely make them want to say ‘yes, everything is fine’ in response to a stranger-donor asking for feedback through the appropriate channels, even though there’s the possibility that it couldn’t be further from the truth. It almost sounds as though you’re suggesting they should be thankful for what they’ve been given (and they genuinely and most-definitely are), but if it breaks then let them go elsewhere because you don’t want to know, thankyouverymuch.

      Thanks for stopping by!

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