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nelliebee | 16:30 Fri 24th Oct 2014 | Health & Fitness
16 Answers
You may remember in June I posted that,I had been diagnosed with"Chronic Thromboembolic Pulmonary Hypertension" I had hoped for Surgery at Papworth, this unfortunately cannot be done as the Surgeon/s would not be able to get to all of the blood clots,and it is a risky operation (the op was described in the Mail on Sunday last week) I was offered some trial drug,but after much consideration thought I may be a Guinea pig for a Pharmacutical company so dismissed that. I did agree to have a drug called Sildanfil and then my Son,(who when presented with a challenge is like a dog with a bone!)
did some research and found information on a drug not yet available on the N.H.S which would hopefully improve my condition. I have a meeting shortly with the Surgeons/ Doctors to hopefully get the named drug privately and pay for it. Bang goes my pension !! Thought someone might be interested?
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and the name is ? .....

anyway this is an unpleasant disease to have
and I hope it goes well.
Well, if the Papworth team think it is too risky then I would go with that.
Sildenafil is well known of cause.....as the erectile dysfunction drug and has been around quite a few years now.

After discussing this "drug" with the surgeons, please get back to us as we are interested.
Oh Nellie you've been through the mill :( Hope it goes well and you are feeling better soon xxx
Poor you nellie,hope all goes well for you.x
Question Author
The new drug is called "Riociquat" (Adempas) It has excellent reviews from Doctors all over the world. ( Lots of positives when googled) Yes I did know of Sildanafil (never thought I'd need Viagra!!) Thanks to you all.
Thanks nellie...never heard of it.........keep us informed.
best wishes to you Nellie.
Question Author
Thank you all very much for your kind words and thoughts, will keep you posted.
Nellie...hope this works well for you.....do update us.....Gx
Best wishes to you, nellie.
Keep it up, nellie, hope all goes well, remember to ask about side effects and probability of them....
Good luck xx
Wishing you all the best Nellie xx
Question Author
Thank you, there are the possibilties of many side effects, but I will be taking the first dose at Papworth, and they will monitor me, and send me home with a blood pressure machine to, check myself daily, and I will have to report back to Papworth every so often for checks. Thank you all again x
Have just seen this.

I hope all goes well for you nelliebee.
Question Author
Thank you, going to Papworth on Monday 27th, will let you all know the outcome, Many thanks x

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