Views on Organ Donation
I decided to post the following message on babyworld today:
Almost half of those who are asked to consent to donating their relative’s organs refuse.
Would you be an organ donor, or give consent for your relative’s organs to be donated?
How many of you have signed up to the NHS organ donor register?
Is it right that relatives have the final say, even if they are knowingly going against the wishes of the deceased person?
I have always wanted to donate my organs, and would also donate my husband’s or children’s should I be in that unfortunate position.
I feel this is a topic that families should discuss so that relatives are not trying to make a decision at a time of extreme trauma – I am sure this contributes to the high refusal rate.
I was interested in particular to find out what reasons people might have for objecting to donating their organs. I have always thought I would want to be an organ donor, long before we entered the world of biliary atresia and liver transplants. Why are there so few donors? Less than a fifth of the UK population are signed up to the NHS Organ Donor Register.
Well, I didn’t really find the answers I was looking for, and although I got a lot of replies to my post, it is now being bumped further down the thread, so I don’t think I will…..
The majority of respondents said that they were either signed up to the register or that they would be willing to be donors. I noticed that some of the people that seem to have an opinion on every topic did NOT post – I wonder if they are not willing to be donors but do not feel they can justify why.
A few people responded to say that although they wished to be donors, their husband or partner was completely against it and perhaps would not carry out their wishes. I am absolutely appalled by this and I believe that the deceased person’s wishes should be final. If someone has signed up to the register then that should not be overridden by their relatives.
The need for consent from next of kin also places a difficult yet crucial decision upon the most recently bereaved – not a group of people capable of the most rational thought, in my opinion. This decision should be made away from such a stressful situation.
I would go further than this and say you should need to ‘opt out’ rather than ‘opt in’, i.e. your organs would be donated unless you expressly stated you did NOT wish this to happen. If anyone feels strongly enough against donation they would do this. It would also mean that some people would really think about why they did not wish to donate, rather than being apathetic about it.
Only two respondents said they would definitely not donate their organs. I did not start this discussion to attack people, rather to gather information, so I did not criticise or closely question either of them. One of them did not give any reason for their unwillingness, but the other response really disturbed and upset me.
This person was anti-donation because her father had died while waiting for a heart transplant. Yes, you did read that correctly. Her posts were short, just a few lines, but my impression of her stance was “No-one wanted to donate the heart my dad needed, so I don’t want to donate to anyone else.” She did actually call herself selfish. She also said that she would not be willing for her children to be recipients of human organs. When I asked if this was because she did not want to go through the whole, awful waiting process, possibly for nothing, she said that this was part of the reason.
I don’t know how recent her bereavement was, but it came across that her feelings were still very raw. I am not trying to judge or criticise her here. I do not know the full story and I have not walked in her shoes. I am just shocked by her reaction. I just assumed that anyone who had suffered bereavement because of the lack of donors would be completely pro-donation and would never want anyone else to have to go through the same thing. I prayed that I would never have to experience such bitterness in my heart.
I knew when I started the thread that it would not be easy to read people’s responses in some cases, and I was right. The other really frightening aspect was that there were several people who were pro-donation, yet did not feel they would be able to donate their children’s organs. At least adult livers can be cut down – what about children waiting for hearts, kidneys, lungs, liver and bowel………
I feel the need to do something, to do my bit to increase the number of donors, but as yet I’m not sure what……..this could be a VERY long term project!
If you are reading, and are not registered as an organ donor, PLEASE take a few moments to do so now. In the UK, you just need to fill in your details on the UK Transplant Website.
My Girls
Thursday, May 26, 2005
Still fighting over the PC!
As yet no news on my laptop - gosh, that saga is worthy of a post of its own! So I am still fighting with Andy for control of the PC in the evenings, and losing for the most part (he has got quite into log4j recently - don't ask!). So posts are still few and far between at the moment - I need space to think in order to blog! I also do my best to stay off the thing during the day, apart from to check mail, discussion boards etc. When I do get on in the evenings it is all I can do to keep up with my mail.
However Andy is at pool tonight, so I should manage at least one post!
However Andy is at pool tonight, so I should manage at least one post!
Monday, May 09, 2005
Waiting for the sleeping lion to roar…
I have borrowed the title of this post, and I must apologise. Although the phrase itself has come into my mind every day since I first read it, I cannot recall who used it originally. The phrase was used to describe living with Biliary Atresia, and for me it was a perfect description.
The lion is always there. You can always see him, out of the corner of your eye. He is fast asleep. Others find it easy to forget he is there; after all, he is so quiet that you can barely hear him breathe. You can even forget him yourself sometimes. He becomes a background object, barely noticeable. But he is there.
Other times you suddenly stop and think ‘That’s a LION’ and it absolutely terrifies you. Even though he is asleep, he’s still a lion. He might wake up at any moment….and then what can we do? We cannot run, for he is our lion and we have to face him.
Sometimes, the lion may stir from his sleep. He twitches a muscle, or snores, or his eye opens just a crack. Your mouth is dry, your heart pounds – until long after he is peacefully sleeping again.
One day, the lion must surely wake. No one can know if he will wake slowly or quickly, or how loudly he will roar. When he does, we must summon all our strength to face him, for he is a formidable beast.
We can only hope that he stays asleep, for there is no way to make him go. He is part of our lives, and we have no choice but to face him with all the courage we can muster.
The lion is always there. You can always see him, out of the corner of your eye. He is fast asleep. Others find it easy to forget he is there; after all, he is so quiet that you can barely hear him breathe. You can even forget him yourself sometimes. He becomes a background object, barely noticeable. But he is there.
Other times you suddenly stop and think ‘That’s a LION’ and it absolutely terrifies you. Even though he is asleep, he’s still a lion. He might wake up at any moment….and then what can we do? We cannot run, for he is our lion and we have to face him.
Sometimes, the lion may stir from his sleep. He twitches a muscle, or snores, or his eye opens just a crack. Your mouth is dry, your heart pounds – until long after he is peacefully sleeping again.
One day, the lion must surely wake. No one can know if he will wake slowly or quickly, or how loudly he will roar. When he does, we must summon all our strength to face him, for he is a formidable beast.
We can only hope that he stays asleep, for there is no way to make him go. He is part of our lives, and we have no choice but to face him with all the courage we can muster.
The Imp in my Angel
Why is it that some days children just seem to get a little imp in them? At least at the moment it seems to only happen with one at a time; I dread the thought of them both being mischievous at once. Usually Hannah is the one to watch (and she’s only eight months old – scary) but today it was Caitlin’s turn.
To be fair the poor child tends to be judged on her own very high standards. 95% of the time she is an absolute poppet. I tend to forget she is only two – you can reason with her!
From the time she got up this morning, I knew it was going to be ‘one of those days’ where everything was going to be done to provoke a negative reaction. Little pokes and kicks, taking toys from Hannah, not standing still to get dressed – all with a certain glint in the eye. The highlight was deliberately weeing in the bath. Some parents of ‘terrible twos’ would probably think that sounds like a fairly good day, but for Caitlin, these are not everyday behaviours. Usually she loves to be told she is a good girl and get lots of praise. She was definitely having a day of testing us out. She has the odd spell like this and then returns to her normal chilled out little self.
They even said at pre-school that she was “full of beans” and they had had to confiscate a ‘magic wand’ from her because she was a bit too violent with it!
And poor Von looked quite worn out after 2.5 hours of looking after them at teatime.
Do you know, in a way I quite like the imp…..although I wouldn’t be so keen if he were to become a permanent resident!!
To be fair the poor child tends to be judged on her own very high standards. 95% of the time she is an absolute poppet. I tend to forget she is only two – you can reason with her!
From the time she got up this morning, I knew it was going to be ‘one of those days’ where everything was going to be done to provoke a negative reaction. Little pokes and kicks, taking toys from Hannah, not standing still to get dressed – all with a certain glint in the eye. The highlight was deliberately weeing in the bath. Some parents of ‘terrible twos’ would probably think that sounds like a fairly good day, but for Caitlin, these are not everyday behaviours. Usually she loves to be told she is a good girl and get lots of praise. She was definitely having a day of testing us out. She has the odd spell like this and then returns to her normal chilled out little self.
They even said at pre-school that she was “full of beans” and they had had to confiscate a ‘magic wand’ from her because she was a bit too violent with it!
And poor Von looked quite worn out after 2.5 hours of looking after them at teatime.
Do you know, in a way I quite like the imp…..although I wouldn’t be so keen if he were to become a permanent resident!!
Saturday, May 07, 2005
Yuck - Internet Propaganda
A couple of weeks ago I read a post on a discussion forum called Babyworld regarding immunisations. The post was by someone who was against vaccinating children. Wondering where she had obtained her wealth of inaccurate information, I decided to find out for myself. For those who wish to read the discussion, click here.
I was completely shocked by the number of websites there are which are filled with exactly the sort of unsubstantiated scaremongering that I found in this woman's arguments. It is very obvious to me that reading this sort of propaganda is what constituted her 'research'. I felt very angry that others are being discouraged to vaccinate their children in this way. I don't dispute that sometimes children can be damaged by vaccines, in the same way that people can react very badly to drugs. However, why are these people convinced that there is some sort of sinister cover-up going on? This would have to be on the hugest of worldwide scales. Why do the overwhelming majority of health professionals the world over recommend vaccination as safer than risking the illness? Are they all in the clutches of profiteering pharmaceuticals? It all seems a little far-fetched.
As I mentioned in my post on Babyworld, one of the most frightening aspects of this propaganda is the 'Do you know what vaccines contain?' element. I chose to research these scary sounding ingredients independently of the vaccination debate. It turns out they are all perfectly safe (surprise).
The influence these websites may have on the uptake for vaccination worried me. But that was nothing compared to what I have found today........
I suppose I shouldn't really have been surprised, but I was. I was also shocked and a little sickened. THE SAME PROPAGANDA EXISTS REGARDING ORGAN DONATION!!!!!
It began with a post on CLASS, my liver support group, regarding an organisation in the US called LifeSharers. The premise behind this organisation is that those who agree to be donors get priority for organs if they need a transplant themselves. I haven't posted an opinion on CLASS as much of the discussion has been based around the existing US system for organ allocation and most of the people on CLASS have much more experience of that than I do! However, I don't think I like the idea of it...but have not yet done enough research to come down on firmly on either side of the fence! Perhaps more on that later.....
One of the other CLASS members found a link on LifeSharers website to another organisation called 'Organ Keeper' . The idea seems to be that people refuse to donate their organs until there is a change in the law allowing them to sell them, decide who gets them etc. Yuck. I then had the misfortune to click on the 'Links' from this page. I have only so far got to looking at one of these sites called 'The Nasty Side of Organ Transplanting'. I'm not linking to it here at present but may decide to do so later. At the moment I feel that no-one else should be allowed to read this ludicrous b******t ever, although that is not a very democratic viewpoint!
(Aside - I have just revisited CLASS and the posts regarding Organ Keeper have been removed by the board as being "very hurtful and degrading for parents who are struggling with such life threatening problems as their child needing a liver transplant" to quote Peggy, CLASS secretary. I think this may have come from the fact that the guy in charge of Life Sharers had signed up as a member of CLASS and begun promoting his organisation. I notice now he is no longer a member......)
This has all come as a huge shock to me. I suppose I find it difficult to imagine that there is anyone out there who would not want to save Hannah's life if they could, let alone actively discouraging others from doing so. If anyone read, and believed, 'The Nasty Side of Organ Transplantation', they would never agree to be a donor or give consent as a relative. In fact they would probably rather just die than be a transplant recipient. The 'person' who created this site even says somewhere on it that he is not even anti-donation, he just enjoys the debate. What a sick individual he is, playing with people's lives. Feeling very angry...grrrr!
There are plenty of places you can find real facts on donating organs - a good place to start is the UK Transplant Website.
Please, don't believe this rubbish. Giving someone their life back is the greatest gift you can give. If you are in the UK, you can sign up to the NHS organ donor register by visiting the UK Transplant Website. If you are not, it should not be too difficult to find out how to register as a donor. And please, make sure your relatives know your wishes.
I was completely shocked by the number of websites there are which are filled with exactly the sort of unsubstantiated scaremongering that I found in this woman's arguments. It is very obvious to me that reading this sort of propaganda is what constituted her 'research'. I felt very angry that others are being discouraged to vaccinate their children in this way. I don't dispute that sometimes children can be damaged by vaccines, in the same way that people can react very badly to drugs. However, why are these people convinced that there is some sort of sinister cover-up going on? This would have to be on the hugest of worldwide scales. Why do the overwhelming majority of health professionals the world over recommend vaccination as safer than risking the illness? Are they all in the clutches of profiteering pharmaceuticals? It all seems a little far-fetched.
As I mentioned in my post on Babyworld, one of the most frightening aspects of this propaganda is the 'Do you know what vaccines contain?' element. I chose to research these scary sounding ingredients independently of the vaccination debate. It turns out they are all perfectly safe (surprise).
The influence these websites may have on the uptake for vaccination worried me. But that was nothing compared to what I have found today........
I suppose I shouldn't really have been surprised, but I was. I was also shocked and a little sickened. THE SAME PROPAGANDA EXISTS REGARDING ORGAN DONATION!!!!!
It began with a post on CLASS, my liver support group, regarding an organisation in the US called LifeSharers. The premise behind this organisation is that those who agree to be donors get priority for organs if they need a transplant themselves. I haven't posted an opinion on CLASS as much of the discussion has been based around the existing US system for organ allocation and most of the people on CLASS have much more experience of that than I do! However, I don't think I like the idea of it...but have not yet done enough research to come down on firmly on either side of the fence! Perhaps more on that later.....
One of the other CLASS members found a link on LifeSharers website to another organisation called 'Organ Keeper' . The idea seems to be that people refuse to donate their organs until there is a change in the law allowing them to sell them, decide who gets them etc. Yuck. I then had the misfortune to click on the 'Links' from this page. I have only so far got to looking at one of these sites called 'The Nasty Side of Organ Transplanting'. I'm not linking to it here at present but may decide to do so later. At the moment I feel that no-one else should be allowed to read this ludicrous b******t ever, although that is not a very democratic viewpoint!
(Aside - I have just revisited CLASS and the posts regarding Organ Keeper have been removed by the board as being "very hurtful and degrading for parents who are struggling with such life threatening problems as their child needing a liver transplant" to quote Peggy, CLASS secretary. I think this may have come from the fact that the guy in charge of Life Sharers had signed up as a member of CLASS and begun promoting his organisation. I notice now he is no longer a member......)
This has all come as a huge shock to me. I suppose I find it difficult to imagine that there is anyone out there who would not want to save Hannah's life if they could, let alone actively discouraging others from doing so. If anyone read, and believed, 'The Nasty Side of Organ Transplantation', they would never agree to be a donor or give consent as a relative. In fact they would probably rather just die than be a transplant recipient. The 'person' who created this site even says somewhere on it that he is not even anti-donation, he just enjoys the debate. What a sick individual he is, playing with people's lives. Feeling very angry...grrrr!
There are plenty of places you can find real facts on donating organs - a good place to start is the UK Transplant Website.
Please, don't believe this rubbish. Giving someone their life back is the greatest gift you can give. If you are in the UK, you can sign up to the NHS organ donor register by visiting the UK Transplant Website. If you are not, it should not be too difficult to find out how to register as a donor. And please, make sure your relatives know your wishes.
Friday, May 06, 2005
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