22.3.14

No words....



I honestly have no words for what a awful week this has been for the PH community, for the transplant community and for the CF community.

I told you yesterday that we in the PH community lost one of our dear friends Lynsey and what a awful tragedy that was for us, so unexpected, far to young. She was so lovely always there for people and willing to lend an ear and I know she will be sorely missed by everyone that knew her and was friends with her. 

Then this morning I learned of another friend who passed away. Kerry. You may remember be talking about her and her fiancee several times on here. Kerry had Cystic Fibrosis and was a shining light for all who knew her. Kerry was one of the first people to welcome me into the world of transplant just after I had been put on the list, we had some very long conversations and she helped me more than she probably knew. She fought SO very hard, for so very long and I just wish she had got the lungs she so desperately needed. 

All this death makes me so very angry because a lot of it doesn't need to happen. I know you cannot stop death it will happen to all of us eventually but Kerry was 23 and if there were more organ donors  she could have lived much longer.

I just don't understand why people watch it happen, why people cannot take 2 minutes out of their day to simply sign up and tell their families that is what they want. How hard is that? I don't think it is. 90% of people say they would take a organ yet only 30 odd per cent of people are signed up. We either live in very selfish society or people are just too lazy and thoughtless to do something about it.  

Please, Please sign the organ donor register and talk to your families

It is NOT okay to just sit by and watch!

Chat soon guys 

14 comments:

  1. I have the feeling that even if everyone in the world was signed up to the register, it wouldn't do much for all the people who need organs RIGHT NOW. Someone has to die before their organs get taken and the majority of healthy people don't just suddenly die. Perhaps that's why people don't sign up, because they don't really see how it would help. Not saying it wouldn't, but I must admit that I've had thoughts like that sometimes.

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  2. I know what you mean and that can be true. However for someone like me the type of organ donor I need usually dies very suddenly no warning and usually they are very healthy and their brains just stop working for no reason whatsoever. So even seemingly healthy people signing up would help. Also saying that last year more people than ever signed up and the amounts of transplants went up by quite a bit especially when you think in 2012 only 2 heart and lung transplants happen and last year 6 happened so quite an increase just by raising more awareness and more people signing up :) xxx

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  3. I understand that, but someone dying for no reason doesn't mean they're healthy, they only seem healthy. There's always something that makes your organs stop working, like a heart rhythm abnormality that causes no symptoms before you suddenly die. So it seems reasonable that most people wouldn't think that would happen to them hence they don't see the point of signing the register. I'm not trying to sound rude or disrespectful to anyone waiting for a transplant by the way (I am on the register myself), just saying what I think. :)

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  4. No it's not rude. I understand what you're saying. I'm just one of those people who think you should be signed up whether you're healthy not healthy, whether you think it will help or not :) xoxo

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  6. I just wrote this out and blogger managed to delete it, how frustrating!
    I wanted to begin by saying how sorry i am to hear of the losses you've experienced, not just this week but throughout your journey as i keep following and I cannot begin to understand how cruel this World can be. You fight bravely, and you're an inspiration, I wish you every luck for the future.

    I just wanted to say, that although i can see (although in my opinion, ignorant and selfishly) what Anon is attempting to say, what an odd reasoning to assume that if you die young you are unhealthy in all parts of your being, and surely if this were the case, no transplants from non living donors would go ahead? It's the ignorance of people (hiding behind Anon again, shouldn't be possible) like this that cause the donor list to be so short, I cannot fathom the ignorance of some people.
    Maybe think of this Anon- at 19 my best friend, the picture of health died from a brain haemorrhage, he was perfectly healthy, minus one defect that he was born with, and would never have known about, yet he had signed the register, and all of his organs, went on to provide several families with healthy, fulfilled lives, had he thought, that he, in death would have been useless, these people now, would possibly not be here, is that not the point? To sign up regardless and hope should the time come that you would provide life to others? My partner is also a Firefighter and we often hear of instances where, especially young people die and their organs are used to keep others alive, these people are often perfectly healthy but involved in accidents, it's not always a health issue that kills.
    Sorry for the rant, but I cannot begin to explain how frustrating i find it, that people willing to accept organs are too ignorant to sign up, often just because they 'haven't though about it', i don't understand how it's possible, but apparently it still is, and without an 'opt out' system i just can't see it changing.

    Again, so sorry for your losses Stacie, and every good wish for the future.
    x

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    1. The previous message did get sent don't worry I've posted both delete which ever you want, if you want to that is. Thankyou for such a amazing comment I think it's hard for some people to know the exactly some of the things that go on with regards to organ donation and I hope your comment helps to enlighten people 😄 xoxo

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  7. posielsie, I certainly didn't say that people who die young are unhealthy at all, and I don't really know how you can assume I did - I only said that they can't possibly be completely healthy, as in have nothing wrong with them at all - otherwise they wouldn't have died. Yes, certainly something only minor can be wrong, and that's what makes them "unhealthy", like the defect your friend had (sorry for your loss by the way).

    I also don't see anything wrong with not having thought about signing up. I don't think this is a subject exactly at the forefront of people's minds, I for example would not even have thought of signing up had I not read blogs such as Stacie's. Some people haven't even heard of the donor register I'm sure!

    Lastly not really sure what you're trying to say when you say "hiding behind anon". You and Stacie don't know me, what would be the difference if I posted anonymously or not? :P

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    1. I didn't take any offence to your message, everyone has different opinions and obviously that's why I try to help raise awareness for organ donation because like you said very few people know or think about it.

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  8. I believe it has to do more with being educated about organ donation. A year and a half ago I donated a kidney and as a result was asked by a representative if The Gift of Life program to speak to NJ high school students about the importance of organ donation. There's not enough press around the topic and clearly not enough public education being done. Sadly, too many will lose their battle waiting for a match - it doesn't have to happen. Society needs to know the numbers and have the myths dispelled. Give Life!

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  9. I came across your blog after hearing about Kerry loosing her battle and it's affected me quite a lot even though I never knew her. I'm 21 w/ CF and CFwD and wondered if it would be ok to follow you on Twitter as I don't know many people with my condition and I'm always wanting to get to know more people (@helen_jrmx)

    Thankyou :)

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    1. Of course you can Helen! I know I don't have CF but I have a lot of friends with CF because I get to meet them going to Papworth a lot and have come across a lot of CF people in my transplant travels lol. Also although we don't have the same disease you can always chat to me and I'll know where your coming from because of my PH :) xoxo

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  10. I just updated my details on the register, thank you for the nudge x x

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Thank-you for commenting <3