PHA UK Homepage
Forum Home Forum Home > Available Forums > PH Related Messages + Information
  New Posts New Posts RSS Feed - The One Show
  FAQ FAQ  Forum Search   Register Register  Login Login

The One Show

 Post Reply Post Reply Page  12>
Author
Message
Susanna View Drop Down
Member
Member
Avatar

Joined: 25 Oct 2010
Location: Herefordshire
Points: 112
Post Options Post Options   Thanks (0) Thanks(0)   Quote Susanna Quote  Post ReplyReply Direct Link To This Post Topic: The One Show
    Posted: 17 Mar 2012 at 8:55pm
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)
Back to Top
Rita View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Brecon Wales
Points: 399
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rita Quote  Post ReplyReply Direct Link To This Post Posted: 17 Mar 2012 at 10:13pm
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
To receive a smile give one away
Back to Top
TonyS View Drop Down
Member
Member


Joined: 28 Dec 2011
Location: southampton
Points: 45
Post Options Post Options   Thanks (0) Thanks(0)   Quote TonyS Quote  Post ReplyReply Direct Link To This Post Posted: 17 Mar 2012 at 10:43pm
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. 
Back to Top
Susanna View Drop Down
Member
Member
Avatar

Joined: 25 Oct 2010
Location: Herefordshire
Points: 112
Post Options Post Options   Thanks (0) Thanks(0)   Quote Susanna Quote  Post ReplyReply Direct Link To This Post Posted: 17 Mar 2012 at 10:50pm
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 - 
Back to Top
jet View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Reading
Points: 350
Post Options Post Options   Thanks (0) Thanks(0)   Quote jet Quote  Post ReplyReply Direct Link To This Post Posted: 18 Mar 2012 at 11:59am
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
Had Lupus for at least 27 years diagnosed with secondary PH in 2006
Back to Top
lpegram View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Witney, Oxon
Points: 137
Post Options Post Options   Thanks (0) Thanks(0)   Quote lpegram Quote  Post ReplyReply Direct Link To This Post Posted: 18 Mar 2012 at 12:39pm
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.
Back to Top
paulinemjc1 View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Shropshire
Points: 106
Post Options Post Options   Thanks (0) Thanks(0)   Quote paulinemjc1 Quote  Post ReplyReply Direct Link To This Post Posted: 18 Mar 2012 at 1:28pm
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.
Mum of 7. Nick, age 23, has Downs syndrome, PH, Eisenmengers, tube fed, other complex medical needs.
Back to Top
margwxs View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Cornwall UK
Points: 237
Post Options Post Options   Thanks (0) Thanks(0)   Quote margwxs Quote  Post ReplyReply Direct Link To This Post Posted: 19 Mar 2012 at 9:33pm
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.
Music makes the world go round
Back to Top
Carole View Drop Down
Member
Member
Avatar

Joined: 26 Aug 2011
Location: Halifax
Points: 486
Post Options Post Options   Thanks (0) Thanks(0)   Quote Carole Quote  Post ReplyReply Direct Link To This Post Posted: 25 Mar 2012 at 8:16pm
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
CA
Back to Top
joanielg View Drop Down
Member
Member


Joined: 24 May 2011
Location: Australia
Points: 106
Post Options Post Options   Thanks (0) Thanks(0)   Quote joanielg Quote  Post ReplyReply Direct Link To This Post Posted: 26 Mar 2012 at 4:29am
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 Tongue
Back to Top
TonyS View Drop Down
Member
Member


Joined: 28 Dec 2011
Location: southampton
Points: 45
Post Options Post Options   Thanks (0) Thanks(0)   Quote TonyS Quote  Post ReplyReply Direct Link To This Post Posted: 26 Mar 2012 at 7:18pm
Life has got busy and I haven't managed to convert the show and upload it to YouTube yet..
Maybe later this week....
Back to Top
margwxs View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Cornwall UK
Points: 237
Post Options Post Options   Thanks (0) Thanks(0)   Quote margwxs Quote  Post ReplyReply Direct Link To This Post Posted: 26 Mar 2012 at 9:11pm
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
Music makes the world go round
Back to Top
Aleksandr View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Points: 236
Post Options Post Options   Thanks (0) Thanks(0)   Quote Aleksandr Quote  Post ReplyReply Direct Link To This Post Posted: 27 Mar 2012 at 11:52pm
All you need to do is click on the FB symbol on the PHA homepage Wink
Simples!
Back to Top
margwxs View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Cornwall UK
Points: 237
Post Options Post Options   Thanks (0) Thanks(0)   Quote margwxs Quote  Post ReplyReply Direct Link To This Post Posted: 28 Mar 2012 at 11:50pm
Thanks
Simples when you know how!!!!Wink
SmileWill go and do just that!!Smile
Margaret
Music makes the world go round
Back to Top
Pete View Drop Down
Member
Member


Joined: 25 Mar 2012
Points: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote Pete Quote  Post ReplyReply Direct Link To This Post Posted: 29 Mar 2012 at 11:24am
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


Back to Top
Karen View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Essex
Points: 592
Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: 29 Mar 2012 at 6:07pm
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.
Back to Top
Karen View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Essex
Points: 592
Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: 29 Mar 2012 at 6:08pm
Back to Top
Pete View Drop Down
Member
Member


Joined: 25 Mar 2012
Points: 1
Post Options Post Options   Thanks (0) Thanks(0)   Quote Pete Quote  Post ReplyReply Direct Link To This Post Posted: 30 Mar 2012 at 3:36pm
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
Back to Top
Karen View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Essex
Points: 592
Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: 30 Mar 2012 at 9:04pm
Pete they may have taken it off because of the uproar it caused.
Back to Top
Rita View Drop Down
Member
Member
Avatar

Joined: 21 Oct 2010
Location: Brecon Wales
Points: 399
Post Options Post Options   Thanks (0) Thanks(0)   Quote Rita Quote  Post ReplyReply Direct Link To This Post Posted: 31 Mar 2012 at 12:08am
Karen it only lasts for seven days and then they are not available
on iplayer.
 
Rita x
To receive a smile give one away
Back to Top
 Post Reply Post Reply Page  12>
  Share Topic   

Forum Jump Forum Permissions View Drop Down