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The One Show |
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Susanna 
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Joined: 25 Oct 2010 Location: Herefordshire Points: 108 |
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 Topic: The One ShowPosted: 17 Mar 2012 at 8:55pm |
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Did anyone see Fridays The One Show - with the lovely young mum having an operation at
Papworth for her PH - (blood clots being removed from her lungs) you can view on iplayer - it was very positive (friday 16th March BBC1 - 7 pm)
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Rita
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Joined: 21 Oct 2010 Location: Brecon Wales Points: 397 |
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Posted: 17 Mar 2012 at 10:13pm |
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Hi Susanna
I did see this programme and what a success story it was, it was a shame they didn't mention the other types of PH where this operation isn't possible, but at least it did get the name PH in the media. I was lucky enough to have had this operation, what a brilliant surgeon Mr Jenkins is, and truly wonderful hospital Papworth is. Rita x
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TonyS
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Joined: 28 Dec 2011 Location: southampton Points: 45 |
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Posted: 17 Mar 2012 at 10:43pm |
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It is available on iPlayer (Fridays) at about 2 min and 50 min in.
I will capture it and put it on YouTube. It shows 29 year old Sue Buckle who was diagnosed 1 month after giving birth. She has a lung op to clear the arteries of clots and the blood is drained and diverted into a temporary machine. Ther was another news story about a Bolton woman 30 who had a double lung transplant It is great to see some good news and build understanding.
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Susanna
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Joined: 25 Oct 2010 Location: Herefordshire Points: 108 |
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Posted: 17 Mar 2012 at 10:50pm |
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Thanks Tony for giving a better summary!!! - I watched earlier on i player after someone asked me if it was
the kind of ph my daughter has (no it isnot!) thanks for putting it on you tube - it was certainly a lovely success story -
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jet
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Joined: 21 Oct 2010 Location: Reading Points: 349 |
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Posted: 18 Mar 2012 at 11:59am |
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Hi I watched it too and it was a brilliant story and I am so happy for the young lady, what a very skillful surgeon. It was really good that PH finally gets a bit of airtime on a main stream tv programme. However I personally feel that it did portray that this was a cure for PH and didnt actually say that only a small proportion could be cured this way. They should have made it clearer that there were different types of PH. I had quite a few call from family and friends asking why I wasnt having this operation. It also gave newly diagnosed people false hope. Now this is just my opinion and I have to say again that it was brilliant for the lady and also for promoting PH. x
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Had Lupus for at least 27 years diagnosed with secondary PH in 2006
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lpegram
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Joined: 21 Oct 2010 Location: Witney, Oxon Points: 129 |
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Posted: 18 Mar 2012 at 12:39pm |
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I had people phoning me asking me why I hadn't told them I was only likely to live 2 years if I don't have the operation!!!! I have never seen my PH as a terminal disease and my friends & family completley freaked when they saw the One Show. I had to explain that it is possible to live with PH with medication for quite some time (I have IPAH), and that I am currently very stable!!
It was good to see PH on tv and such a positive outcome for Sue. It's great to hear a lovely story with (fingers crossed) a happy ending.
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paulinemjc1
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Posted: 18 Mar 2012 at 1:28pm |
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If you go to the PH page on Facebook you will see there have been 81 commwents made since the programme was shown on Friday and number of us have been in touch with The One Show about it.
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Mum of 7. Nick, age 23, has Downs syndrome, PH, Eisenmengers, tube fed, other complex medical needs.
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margwxs
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Joined: 21 Oct 2010 Location: Cornwall UK Points: 237 |
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Posted: 19 Mar 2012 at 9:33pm |
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I only found out about it after it had been on, so watched in on IPlayer. Yes it was brilliant as so many people haven't a clue what PH is or how it can impact on what had been a previously "normal" life. Maybe now this has been shown, that more airtime will be given to Ph in the future, explaining that the operation is only suitable for a few people. I was told, after my first RHC at Papworth, that I should cancel my planned winter getaway to Portugal and Spain, as I needed the operation. I refused to cancel it and said I would need time to consider my options. Am so glad I did, as on my next visit, I learned it was a locum, I had seen, not Dr Joanna, and who should never have told me I needed the operation, as it would not have cured me!!! (I had already made my mind up that I didn't want to go through with the operation at my age and with my other medical history!!) It was very interesting to see the operation and the outcome!! What a brilliant surgeon Mr Jenkins is and what a wonderful team they are at Papworth.
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Music makes the world go round
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Carole
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Posted: 25 Mar 2012 at 8:16pm |
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Hi,
I too was rung up by a good friend from Spain. She was very excited as she believed there was a cure for idiopathic ph. She was devastated when I told her that it was not the case with me. That said it is good to bring ph to the foreground but I still pray, as I am sure we all do For a cure for all people with ph wether idiopathic or otherwise. How do you get on Facebook ph. I type phassociation Facebook but end up with the normal one and I do not want to wade through all of that Carole
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CA
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joanielg
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Joined: 24 May 2011 Location: Australia Points: 106 |
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Posted: 26 Mar 2012 at 4:29am |
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Carole there is PH Family on facebook where a lot of us are and PHA Australia has a group named Pulmonary Hypertension Australia.
Aussie Joan  |
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TonyS
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Posted: 26 Mar 2012 at 7:18pm |
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Life has got busy and I haven't managed to convert the show and upload it to YouTube yet..
Maybe later this week....
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margwxs
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Joined: 21 Oct 2010 Location: Cornwall UK Points: 237 |
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Posted: 26 Mar 2012 at 9:11pm |
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Hello Everyone
I have just been and looked for the UK facebook group in Face Book but there seem to be so many, I didn't know which one is for the UK! Please can someone point me towards the right one?? Thanks Margaret |
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Music makes the world go round
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Aleksandr
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Posted: 27 Mar 2012 at 11:52pm |
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All you need to do is click on the FB symbol on the PHA homepage
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Simples!
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margwxs
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Posted: 28 Mar 2012 at 11:50pm |
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Thanks
Simples when you know how!!!!  Will go and do just that!!Margaret |
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Music makes the world go round
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Pete
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Posted: 29 Mar 2012 at 11:24am |
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Hi Tony
Would be grateful if you could let us know when you do put it on YouTube. Have sent the original One Show link to our friends, but some tried to open it too late, and it was no longer available. It really does help people to understand what PH sufferers have to endure. My wife is going for a pre-op assessment with Mr Jenkins in a fortnight - so we're crossing everything hoping he says she is a suitable candidate for the op. She feels better having seen the feature - I feel a hundred times worse! Thanks in anticipation Pete |
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Karen
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Posted: 29 Mar 2012 at 6:07pm |
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Hi Pete if you want to see it you can go to the home page of the ph site and there is a link for it.
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Karen
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Posted: 29 Mar 2012 at 6:08pm |
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Pete
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Posted: 30 Mar 2012 at 3:36pm |
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Hi Karen
The link works - but the video is no longer available - (Sorry, this programme is not available to watch again). Hence, me hoping it had been posted elsewhere. Thanks Pete |
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Karen
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Posted: 30 Mar 2012 at 9:04pm |
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Pete they may have taken it off because of the uproar it caused.
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Rita
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Joined: 21 Oct 2010 Location: Brecon Wales Points: 397 |
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Posted: 31 Mar 2012 at 12:08am |
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Karen it only lasts for seven days and then they are not available
on iplayer. Rita x
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