Organ donor Register

Gracesmum, I am not sure whether it was me but it is very true. When I saw my sister she was looked after like any other patient in Intensive Care, there was of course the chance in several billion that she would come back to a semblance of life. This is why 2 days passes between the diagnosis of brain stem death and the switching off of machines and the removal of the organs.

But I am not trying to tell a tale to get sympathy I really said all I did because it is easy to think that the opt out scheme is the simplest way to get the organs needed but the nature of the processes surrounding donation can pour additional torments over the family of the deceased who are already devastated by what is usually the sudden death of somebody dear to them. If they for any reason can not face the prospect of organ donation and the potential donor has never expressed any desire to donate to force them to accept the harvesting of organs is cruelty beyond an accepable level.

I understand that in countries that do have an opt out system, many potential donor's organs are not taken because of the opposition or distreaa of the relatives at the thought of the deceased's body being used in this way.

I think it was on GN that I read - was it you Flickety? - that someone was at least able to say goodbye to an apparently sleeping sister rather than pay their respects in a hospital chapel. That must have been incredibly moving but how much better to remember her like that. This "suspended anomation" was why I was so impressed by the nursing staff in ITU caring for the patient whose family we met. She was talked to as if she was conscious, they washed her, brushed her hair, changed wires to the machine - all the time as if she was able to hear them.

The doctors looking after my sister did everything they could to save her life. We never felt that the possibility of harvesting organs was put ahead of her welfare.

However I do not support an opt out system. Until you have been through a situation like this you can have no idea of the circumstances surrounding the death and how the family are affected. My sister sustained severe head injuries. After one operation failed to reduce the pressure on her brain a second one took place that the doctors told my parents meant that, if she survived, she would all most definitely be left very severely mentally, and possibly, physically impaired.

I was away when all this was happening but my mother said to me later that she never thought she would sit at the bedside of one of her children and pray for their death because she could not bear the thought of the pain and distress my sister would suffer if she survived.

The effect on both my parents, who were both in their late 70s, if my sister's body had then been subject to further surgery while removing organs without their consent does not bear thinking of. Remember, the body of a person who has died, but whose organs are being taken, is kept on a life support machine for two days after their death in order that there can be no doubt that they have died. The body is kept in a room in Intensive care. It is connected to machines so that the blood continues to circulate round their body. As a result they are warm to the touch, they have rosy cheeks and pink finger nails. The machine that keeps them breathing causes their chest to rise and fall as if they were breathing. Think of relatives living with this so that something can be done to the person they have lost, but not fully lost yet that they do not want to happen for any reason. It is difficult enough when the organs are being donated voluntarily.

Sorry this post is so long and so graphic, because I was away from home at the time I did not see my sister until she lay like sleeping beauty in suspended animation. I could cope with it, other family members found it very very difficult. It is too easy to say 'lets have an opt out system' without knowing what it entails.

I have wondered about the problem of being a donor if you've previously been treated for cancer too Jess. I was no longer needed as a blood donor after having been treated for breast cancer several years ago. So can our various organs be used or not?

I carry a card. Not sure if they want the discarded organs of those who have had a cancer though. There is some concern that micro tumours that are inactive could cause a cancer in a donor recipient.
I agree - time we had an opt out system. need a government with cojones. Surely it would be easier than the anti hunting law?
Bone marrow registers are also important. I wish they would change the name, because these days the norm is a stem cell transplant. No more big needles in the hips. The donor has some injections to mobilise stem cells from the bone marrow and they are collected by a process a bit like dialysis.
Very difficult to get a match sometimes because of the number of genes involved in tissue types. leukaemia treatments are improving all the time but for some adults and children a transplant is the only option.
A recent initiative is cord blood banks. They strip blood from umbilical cords after normal deliveries (the parents consent to this) and freeze it - it is rich in stem cells and can be used for transplants.

We who live, with dear ones that survive
Give grateful thanks to the ones whose love's have died
You have given life to them whose hope was lost
For life, for fun, for love and most
For a future, to go on live,aid others
And please all of you, join the host
Of doners!

Wonderfully put gm
As a retired medic I can only reiterate that our primary concern is for the patient! Organ donation is secondary!
Unfortunately though in the stress of the situation, when death is inevitable, the possibility of organ donation is often forgotten!

FlicketyB and to your parents - it is NOT an easy decision for any partner, parent, child or sibling to take especially when experiencing the trauma of an accident or sudden bereavement. This is why I thnk it is a decision which has to be taken coolly and rationally and then stuck to. Common fears that a patient is not being ressuscitated because their organs are "wanted" are completely unfounded too and that myth needs to be dispelled.

FlicketyB, so agree with you. I have always had a deep overriding feeling that my body is just a sort of vehicle for 'me'. When I am gone anyone that can make use of the bits left is very welcome. I have registered for the donor system AND told my children how I feel (thats so important as they need to really feel comfortable with it - and thankfully they pretty much feel as I do)

Twenty years ago my sister was fatally injured in a road accident. My parents were approached about donating her organs. My mother's inclination was to say no, she felt, in the immediate moment that her daughter's body had been so damaged by the injuries she sustained and the attempts to save her life that she couldn't bear her body to be further mutilated .

However looking through my sister's wallet my mother found an organ donation card. As a result both her kidneys, liver and corneas were taken. Her heart was too damaged for reuse. Two young men and one 15 year old girl had a second chance of life as a result of our tragedy.

I would ask everybody to be prepared to donate their organs or those of family members who have died if they possibly can. As far as I am concerned they can turn me into a kit of parts to help others. We are remembered for what we are and the knowledge that so much good came from our tragedy gave us some consolation.

I'm registered and so are my family, so I have no doubt they would agree to my remains being made use of - if there's anything useful left.

Which is why it is so important to talk to all your relatives about your wishes- and that you would ask them to VOLUNTEER, asap after demise.

www.independent.co.uk/life-style/health-and-families/health-news/tragedy-of-britains-organ-transplant-patients-8488397.html

This article doesn't make optimistic reading either. I was trying to check if your relatives can over rule your wishes, which I think is so wrong. It really is time they made it opt out. It must be so hard for the doctors too, having to ask relatives for their consent at such a time.

Reminds me of an elderly woman who lives in a nursing home where SIL's sister is a nurse. She is unable to move at all but her mind is alert. When she had a stroke her husband insisted she be kept alive at all costs. Two weeks later he died unexpectedly and seven years on she is still living.

Just make sure you outlive him - to be on the safe side!

I`ve carried a card for many years, but my husband said that he wouldn`t consent to my body parts being taken, so I then joined the donor register, as I was told that his wishes would not then apply, hopefully that`s correct.

Well said!

Sook, Galen and I - plus others I don't know of would testify to the inestimable value of organ donation. When DH was having a bit of a crisis and in ITU shortly after his liver transplant, I met a family in the relatives' room whose adult daughter had been brought in after a (fatal) brain haemorrhage. I was moved and impressed by the caring and indeed loving way she was tended by the nursing staff who talked to her as they washed her, brushed her hair, saw to tubes, machines etc. Her family and we got to know each other quite well over the 2 days we were together (although DDs and I retreated to down the corridor to give them privacy at the worst times such as when they got the news that there was no hope for her) Her family were devastated but she had had a donor card and having met DDs and me, said they were surer than ever of offering her organs for transplantation as they could see how I had a DH and the girls had a father thanks to his transplant. The following Christmas, every card we sent out contained a donor card for our friends and family to sign and the DDs gave them out to all their friends at school and university.
We do need a better system as there are fewer organs available - thanks in part to better car safety and the good news that more people survive major accidents. The wait for an organ was one of the worst periods of my life - I didn't want someone to die so that DH could live, but nor did I want to lose him at the age of 49.
Good friends lost their teenage daughter in a stupid accident crossing a road about 17 years ago - it gave them a smidgen of comfort to know that her heart, liver, kidneys, cornea and I believe skin gave new or vastly improved life to at least 4 or 5 people.

Same here! I had 14 extra years with my late husband because of a kidney transplant.
I am SO grateful to somebody whose name I will never know for those years!

Totally agree it is time for an opt-out system for the UK. And also that it is essential to talk this through with close relatives, so they know what your wishes are. Mine know that in the case of my demise, they have my clear instructions to overcome any grief and VOLUNTEER my organs for donation- as so many medical staff find it so difficult to ask grieving relatives, especially for children and young people. Sadly I cannot be a donor where I live, as I lived in the UK during the CJD crisis - but I could donate in the UK.

I would go even further, and I know this is really controversial, but those who opt-out should also opt-out as recipients.

sunflower that is spooky, because only yesterday I was discussing this with DH.

I am totally with you re. the opt out thing, I believe that many people would be happy to donate, but just don't get around to registering. If it was the other way, i.e. unless you have actively said no it would be assumed that you accepted that any usuable organs would be taken, then those that were anti could (and probably would) take steps to ensure that their wishes were met.