Organ Donation - The Side Of The Story They Don't Want You To Know

A Mouths of Mums reader story…..

Please be warned that I have been honest and not tried to filter my thoughts too much. This story might be distressing or offensive to some people so I do warn you that it is not a pleasant read!

I wanted to share my story – not to discourage anybody but to try to make people realise the truth about the gift that they have been given.

A few years ago, my family was really shaken up by the sudden loss of a loved one. Brain death would be listed as the official cause of death. It was so hard to see this person laying there looking absolutely perfect and pink and alive but to know that inside, they were gone. Their brain was done, finished, ended, erased. Everything that gave them their personality, made them smile, made them hope, made them human, was gone.

In the blink of an eye, it was all over. Braindead. We had pamphlets thrown at us explaining in harsh, clinical terms what had happened. It was a flurry of doctors and nurses. Nurses were only there for you to cry on. All these medical people but not one of them could change the fact that our loved one was gone. And straight away it seems, we were bombarded by questions. Our loved one had given permission for organ donation.

We Were Just Pawns

We were onboard with the donation and respecting wishes but literally felt that the co-ordinators and the doctor, to an extent, had done this all and seen this all before and we just became pawns.

‘Just Meat’

We went to the hospital and the doctor continued to use the ultrasound machine in front of us and comment on how the organs were really healthy and looked like they came from a 30 year. They had NO regard for the fact that the family was standing there while they were checking “the quality” of the “meat”.

As soon as the doctors had what they wanted, that was it. A letter from the organ donors co-ordinator saying that the organs had been dispersed and that was it.

No Thank-You’s For The Most Precious Gift

Out of four people that my loved one’s organs had saved (heart, lungs etc) only one person bothered to write a letter, one year on. We didn’t want the world, we weren’t seeking any kind of compensation BUT to get a letter and hear how your loved one has saved someone else’s life and made miracles for them…well that was the whole point!

Everyone goes on about donations but I don’t know how to feel. I know that we were treated like it was all just routine business but we were going through an unexpected loss and trying to understand what had happened. Instead of processing and dealing, we were BUGGED REPEATEDLY to give our consent for the donations and even had it mentioned how we would be disrespectful if we didn’t honour our passed one’s wishes. I wish that I had been able to say, hang on, give us a minute!

I just wanted to share this. I don’t regret doing what we did, I do regret the way we were treated for helping to give” life”.

Please!!!! if you are ever touched by this circumstance, please!!!! The least that you can do is to say THANK YOU! even if you don’t say another word!

What If We Had Said NO!

My loved one died and now you have a chance at life. The least you can do is be grateful! Things could have been different if we had said no……

Don’t forget that you are literally accepting the gift of life! Unless you have been in this situation, you will never know what it feels like. Not the easiest situation to navigate but a simple thank you is all it takes. I know a lot of people who have heard our tale immediately say “oh I am not donating then” but that is not my goal! I want you to donate, I want you to live, I want you to be at peace with the decision. I want you to appreciate how lucky you are but let others know this!

While I am grieving still for my loved one, you could say thank you for the gift. That is all. I will be happy that you got another chance at life! A piece of my loved one is out there in the world.

Not everyone will have the chance to give or get a gift like this and that makes it a truly precious thing!

My loved one loved humanity enough to donate a piece of themselves to give life.

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15 Comments

- - meedee said
  - 30 Jun 2022
    12:11 pm
I think we all handle things differently.
I beleive that we go on from here and when someone passes their soul…the part that makes them who they are…. the soul has moved on and left the body behind because its no longer needed.
For organ donation time is of the essence. And I think its more about helping someone and just having the knowledge. The families whos loved ones receive an organ have also been going through a lot and for some they just might not know what to say. They know that someone had to die for them to live and that is a very tought thing to feel thankful for. Just because they didnt write a letter doesnt mean they are not eternally thankful.

I think we just need to remember……we all handle things differently.

- - mom101628 said
  - 21 Jul 2019
    11:27 pm
So sorry you felt that way -organs have to be received quickly or they won’t be of any use. Also most recipients never know who their donor was as they aren’t allowed to know as also the family of the donor aren’t allowed to know where their donations were given. I guess it is to stop people feeling they know the new family and the family owes them something. I have given my organs, skin, eyes and whatever else is required to whomever would require it upon my death but don’t expect my children to want a thank you letter because that is my will and they know it.

- - tessie said
  - 12 Apr 2018
    6:03 pm
I don’t know how I would handle things in your situation. A thank you letter would be a nice thing to receive. These could be sent to the donation team who could send it on to the donors family. It may be helpful for you to know that your sad loss helped someone else’s loved ones survive. It’s just a little thing that would mean so much

- - mom90758 said
  - 11 Apr 2018
    3:23 pm
What a sad situation. I understand what june11 writes in the post before. They need to act quick or it could be too late to use the organs. But the hospital should definitely offer more care to the patient’s family. They have to deal with a loss and they are pressured to put their thoughts behind and think about other stuff.

- - june11 said
  - 10 Apr 2018
    6:44 am
My sympathy to you. Unfortunately if organs aren’t transplanted quickly enough they sometimes don’t function properly. They could leave the patient on life support for a little longer for you to think about it and you not be rushed so much.
The recipients are not normally told anything about the origin of the organs they receive. Most recipients probably wouldn’t think about writing a thank you letter or card and wouldn’t know where to send it if they did. For some the recovery period is long too.
I understand why you feel like this and thank you for making us aware of it.

- - nadine_hill said
  - 08 Apr 2018
    3:29 pm
Life is such a precious gift … absolutely heartbreaking when taken away and, if given a second chance, should be thankfully accepted – more compassion should definitely have been shown ….

- - ella12 said
  - 04 Apr 2018
    2:34 pm
I agree that they should have been more compassionate and sympathetic.

- - sars_angelchik said
  - 04 Apr 2018
    9:42 am
I agree – it costs nothing to say thank you and medical professionals, even when busy, should always been compassionate.

- - rachel1970 said
  - 04 Apr 2018
    7:19 am
It would be a hard thing to give consent for your loved one to be ‘donated’ so to speak, an exceptionally hard decision. On the other side, I would be so completely grateful to have my loved on or myself to receive an organ.

- - mom297734 said
  - 03 Apr 2018
    10:47 pm
Firstly, I am so sorry for your loss.

As a liver transplant recipient, there isn’t often half a day that goes by when I’m not thinking about my donor or my donor’s loved ones. It took me a year to find the words to thank my donor’s loved ones, but it will never be enough.

It is gut-wrenching to hear how clinical the process was for you and your family, and the lack of gratitude you’ve recieved so far for such an enormous sacrifice is astounding. I can hardly begin to imagine how this amplifies your pain. Just know that there so many incredibly thankful recipients out there, people who actively contribute to donation and transplant communities, who would do anything to show their respect for such a life changing gift.

Thank you for sharing your experience, and I sincerely hope it brings about a positive improvement for other families going through such a life changing time.

- - becstalou said
  - 03 Apr 2018
    9:15 am
I hope someone can learn from your experience. Sometimes it’s the most simple things like thank you that have the most impact.

- - Ellen said
  - 03 Apr 2018
    4:04 am
This must have been so hard and painful !
When someone is brain death and gave the organs up for donation, there is simply no time to have attention for the feelings of the loved ones from the one who died. Besides this, doctors and nurses should always keep a certain distance / disattachement from their clients and family, to do their work properly. But I do think it would be good when a team of counsellors would work alongside the medical team in the case of organ donation.
In most cases organ donation goes anonymous.
- deb_gs replied
  
  03 Apr 2018 , 8:38 pm
  I feel for you and your family what you have been through and am grateful that you shared your thoughts.
- - BellaB said
  - 02 Apr 2018
    10:38 pm
This sounds horrible. I am so sorry for you.

- - mom206279 said
  - 02 Apr 2018
    8:50 pm
Its absolutely horrible that you were treated this way. Its extraordinarily unfair that you don’t have all the time you need to say goodbye. I imagine the doctors simply can’t allow themselves to think too much about how you’re feeling and what they’re doing. I know I couldn’t do anything other than focus on the lives I’m potentially saving instead of the life I’m ending if I was in that position. Its one of the shittiest things to rush a family through. Time is just key. As for not sending thank you notes. I could never just ignore that kind of gift it was given to me or someone I love.