Wednesday, June 16, 2010

Should We Pick and Choose Organs?

I feel very strongly about this subject. This blog has got away from the medical side of things in my quest to remember the wonderful aspects of raising two precious daughters but it was originally set up to document life with a 'liver child' and this is part of our lives. Sometimes I have refrained from commenting on stories in the news, feeling that there are two sides to every story. But this one I am too passionate about to stay silent...

You may have recently heard the story of Lyndsey Scott who passed away after suffering from pneumonia. Pneumonia is a killer, even more so in immune suppressed people like Lyndsey - and Bethany. It's a scary prospect, especially as we have friends who recently sat in PICU with their child for what felt like months while pneumonia almost killed her. In the life of a transplant patient there are many extra risks, it's a balancing act between living a full life but not being exposed to dangerous risks. Everyone copes differently and no one is right or wrong, we choose to live each day to the fullest but always having that thought tucked away at the back of our minds knowing that it could all be taken away.

This is a quote from The Independent, "The Government's "transplant tsar" insisted today that organ transplants were carried out on the basis of whether they would work - after it emerged that a cystic fibrosis sufferer died after receiving the lungs of a long-term smoker."

This is infuriating me. Every single story I have read or watched about Lyndsey has quotes similar to this one. The stories are hugely slanted into swaying public opinion about being given choices during the transplant procedure. But whilst all of the stories have pointed out that Lyndsey died of pneumonia which was not linked to the specific lungs she received, this fact seems to have been forgotten due to the slant on reporting.

How did someone dying of pneumonia, which is a risk in the 'healthy' world and even more so in the transplant community, turn into a discussion about whether patients should be able to pick and choose which organs they will accept?

When Bethany was listed for transplant we were told that they would hold out as long as possible for the perfect liver but if her health deteriorated to such an extent that she was in imminent risk of death (as opposed to being given approx a year to live) they would accept a marginal liver. A marginal organ is one that is fit for transplant but not in perfect condition. Ok, that's not a medical description, that's my description as the mum of a child who has had a transplant and how I understand it. Given the option between death or an organ that is suitable for transplant but labelled 'marginal' I can't imagine anyone saying no. I am anti-smoking and anti-drinking, I don't do either. But I am not naive enough to think that the donor who saved Bethany's life should have the same priorities as me. The bottom line is, if the organ (which goes through rigorous tests) is deemed suitable for transplant then we have to accept that. I can't imagine any team ever saying, "Well, it's not a good organ, it's unlikely to last but let's use it anyway." Seriously, they are trying to save lives. In Bethany's case, an example of a marginal organ might have been a liver that was maybe fatty but working fine as opposed to a leaner one from a very fit person.

As a lot of you will know, we have had disagreements with Bethany's liver team in the past. I think you would struggle to find any parent who has not disagreed with their team at one time or another; they are, after all, dealing with the most precious things in our lives so emotions are bound to be running high. This opinion is not based on whether I like our team or not, whether we put them up on a pedastal or not, it's about common sense and how the system has to work for everyone. Where do we stop if people can choose their organs? Do we let people say no to an organ because the donor did something during their life that we didn't like? What if they are a different religion, race, gender, sexual orientation, a drinker, a smoker, a manual worker, a desk worker, a parent, a loner? What about personality or mental health? Should we be able to say no because the donor suffered from depression?

In my opinion, we should trust the doctors. They are trying to make the best matches possible with the very limited amount of donated organs available. If the lungs that Lyndsey received were marginal (and remember she had been listed for FOUR years and surely must have had a very limited time left) then it was the best choice for her. Why does the fact that she later died of a complication that all transplant patients can pass away from suddenly raise the issue of whether she should have received those lungs? Without them she would have died. Full stop. With them she had a chance of living. Sadly, it didn't work for Lyndsey and my heart goes out to her family. I have spent many hours in the past trying to imagine being a part of a family unit consisting of 3 and not 4 people but it just seemed impossible. I am never complacent about the fact that I only had to imagine it, I am not living it. It's such an emotional subject and I can understand why her family would be so torn at a time like this. But I think it is wrong to link two separate issues - being given lungs from a smoker and dying of pneumonia - and put them together in such a way that the news is slanted to make the reader believe the two are linked. And it breaks my heart that this could have done damage to the image of organ donation when it already has so many prejudices.

Bethany was very lucky, she happened to need an organ which is one of the most available and can come from a living donor. Double lung transplant patients don't have that luxury. I hope with all of my heart that no one has said no to organ donation because of this story. The question we should be asking is why did Lyndsey's team have to make the choice about lungs coming from a smoker that may be marginal? What can we do to get more people to sign up to the organ donor register so that in future the medical team do not have to make the same decision?


Anonymous said...

If any of my children needed a transplant of any kind, I would accept one from a green eyed, spotted, purple human if the doctors deemed it a good enough match.
I don't think we should decide whether to accept an organ based on the donors history - where would it stop. "Sorry we don't want that liver, he supported West Ham".
I think we have to leave the decisions to the doctors in cases like this. They aren't going to use any organ that isn't the best match and condition possible.

Pat said...

I have to agree with all that has been said, both by Anonymous and by Sam herself. I cannot imagine wanting to refuse an organ, if it has been donated, and deemed to be okay to be used, then surely there should be no reason to have it refused. An organ donated is a gift, and to refuse would be - in my opinion - very rude, and possibly life-threatening.
I am also anti-smoking, but think that, when you need an organ, you cannot possibly consider refusing one, no matter what reason.
As Sam has stated, this could continue to be very prejudicial and therefore, good organs could be destroyed rather than used.
As to the 'how can we get more people to donate' - by telling everyone we know that it is the best thing to do.