In black and white

[paula lynne]

Read last night on a health formum, (written byt a doctor), that my Aortic Reflux....is progressive and will kill me!! I was diagnosed in July. The article says sufferers make a rapis decline and usually die around 1o years after initial diagnosis. So thats it, struggled for 11 years with anx, agoraphobia...and now this. Feel scared and angry. My gp hasnt told me any of this...cant believe it. Im 39.Obviously, had a massive panic attack last night, and kept my husband up til 2.30am, and hes very angry with me for reading that knowing it will make me anxious. I just needed to know as gp had said nothing. Feel like I might as well just give up, been struggling and fighting for most of my life and seriously think I cant take much more

[PokerFace]

Are you sure it was an actual doctor? Cuz that type of scare mongering on a health forum doesn't sound very doctorish to me! I don't know a lot about Aortic Reflux but I've read about it (cuz I'm scared I've got it) and yes I've heard it's progressive but not SO progessive! 10 years doesnt sound right to me!

Some one told me a nice story the other day though. His Grandma was given 5 years to live after being diagnosed with a nasty illness (he didn't go into details) and 15 years later shes still here. She swears its positive thinking and the drive her family gives her.

I'm so sorry you're feeling so bad, you've got support here and in your family. Please don't give up cuz you never know what's just round the corner. Sounds cheesy I know but we really don't! I really REALLY hope you feel better soon. xxx

[paula lynne]

Thank you Emma.x I think I will go and see my gp, (hard with agoraphobia but will try). Your words have made me feel a bit better, thanks for taking the time to reply. Didnt realise it was progressive, I wonder if I can have an operation? Its just a faulty valve not closing...oh well, will try not to think about it too much. Pyjama day and crap tv will help !

[PokerFace]

Yea, I spoke to someone who also had it on here a few months ago when I first joined. She said eventually they will have to replace her valve, so I really don't think it's gonna kill you in 10 yrs! Jus keep goin to the docs now and again so they can keep an eye on it. I know it must be horrible for you right now but keep soldiering on! It won't feel this bad forever! xx

[Going home]

Hi Paula, sorry you've been scared like this and hope your anxious thoughts can be eased a bit today. If you're agoraphobic your doctor might have a chat to you over the phone...mine was always good that way with me. I could call the surgery and the receptionist would arrange a time for the doc to call me or for me to call him, either before or after his appointments, or even the practise nurse would know about this condition, or you could call NHS direct perhaps? I'm sure someone will be happy to talk to about this today. Take care.

Anna xxx

[paula lynne]

Thank you Anna x I feel a bit better now, will def see gp. At least I found out that an operation is a possibility, so its not a hopeless situation. Lots of palpatations today, but I know why. Thanx for your reply.xx

[alicegreen]

Hi there, do you mean aortic regurg or a leaking aortic valve?

if so it may not be as serious as you think. I was told that 2 of my valves leak a trivial amount when I had an echo, and the cardiologist was in no way concerned. I have to have a repeat echo in 3-5 years time.

They grade the leaks according to severity and it is likely that yours is fairly trivial if your doctor has not mentioned any medication or follow up to you. Worst case scenario would be a betablocker and follow up scan to monitor your leak.

My husband has marfan syndrome, which causes aortic aneurysm in the root of teh aorta, which he has, and he has to have an echo yearly. In the 16 years that he has known about the condition the aneurysm has only grown by 3mm, and not changed at all in the last 3 years. If it gets to a certain leven he will need an operation. I do often worry myself silly over this, but it is good to be monitored and know teh score really. A planned op is far better than not knowing that he has a problem and the aneurysm starts leaking!

My FIL also had the condition and he had 3 aortic valve replacements plus 2 revisions in his life. (this is unusual, he was very unlucky and got endocarditis twice!)

What I think you should do is make contact with your GP to discuss the implications of your particular problem, writing any questions down before you go.

HTH and good luck xxx

[paula lynne]

Hi alicegreen and thanks for your post. I was told I have aortic reflux, which is regurgitation. Am going to see gp in 3 weeks so will ask. I keep getting very bad, constant pins and needles in my hands and feet, is it the ar or my anxiety?? any comments would be much appreciated xxx

[alicegreen]

I would be willing to bet money on that being anxiety related. I had periods of this on and off for years, and sometimes it was painful.

Once I accepted it was anxiety it gradually went, though very occasionally now and then I get a twinge when really stressed.

I hope that I have reassurred you x

[paula lynne]

THANK YOU I feel better, much more reasurred. x those bloody medical websites are a menace!! it clearly said death in ten year with aortic regurg, Im never reading them again. I ll see my gp in 3 weeks, Im sure it be ok. x thank you so much x