Update If Anyone Is Interested!

[nelliebee]

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?

[Peter Pedant]

and the name is ? .....

anyway this is an unpleasant disease to have
and I hope it goes well.

[Sqad]

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.

[kvalidir]

Oh Nellie you've been through the mill :( Hope it goes well and you are feeling better soon xxx

[whistonian]

Poor you nellie,hope all goes well for you.x

[nelliebee]

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.

[Sqad]

Thanks nellie...never heard of it.........keep us informed.

[lady-janine]

best wishes to you Nellie.

[nelliebee]

Thank you all very much for your kind words and thoughts, will keep you posted.

[gness]

Nellie...hope this works well for you.....do update us.....Gx

[chrissa1]

Best wishes to you, nellie.

[DTCwordfan]

Keep it up, nellie, hope all goes well, remember to ask about side effects and probability of them....

[pixie373]

Good luck xx

[Psybbo]

Wishing you all the best Nellie xx

[nelliebee]

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

[marval]

Have just seen this.

I hope all goes well for you nelliebee.

[nelliebee]

Thank you, going to Papworth on Monday 27th, will let you all know the outcome, Many thanks x