Freaking out - newly diagnosed

Posted , 6 users are following.

I am freaking out. 

In lat October I went to emergency with chest pains - which turned out to be unrelated. But during their work up on me they found a very strong heart murmur. This lead to an ultra sound appointment early Nov  which found my ascending aorta was at 5.0 to 5.5 cm along with a leaky aortic valve. 

I had one meeting with my cardiologist in min Nov. at that appointment he told me I would need an ascending aorta replacement and possible a valve replacement. He schedules a detailed CT Scan for Jan 17th and I was to meet him to discuss the results right after the Scan. 

On Dec 3rd I was rushed to the hospital with sever chest pains. I had an emergecy CT Scan to rule out a rupture. I was sent home and told the chest pain was not cardiovascular related it was skeletal muscular. 

My detailed CT Scan has been moved forward to Dec 13th because the cardiologist feels my case is urgent. 

I will not be seeing my cardiologist right after the scan now (scheduling)

I am freaking out because I really do not know what is going on. I only had one real talk with the cardiologist and to be honest once he said I needed heart surfy I was kind of in a fog. 

Since then I have only had phone calls and mail from his assistant. 

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  • Posted

    Corrections:

    *In late October...

    *He scheduled a detailed CT Scan ...

    *once he said I needed heart surgery I was kind of ...

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  • Posted

    Hi Bigfife what country are you in? I am in the UK but I know things are different in the US. Sorry to hear your distress but at least they are talking elective surgery - which is big I know it is a nightmare.
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    • Posted

      I am in Canada. 

      Another big plus that everyone keeps telling me is my doctors are form Hamilton Health Sciences (a group of 5 Hospitals in Hamilton Ontario Canada) and both my doctors and HHS are highly regarded in the cardiovascular field. 

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  • Posted

    yep - you have to recalibrate what is good news! I don't know if I have. But having confidence in those lookig after you is big. I'm still battling with that one so thumbs up

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  • Posted

    My story us very similar. I had a ct scan for something unrelated and dignosed me with an ascending aorta size of 5cm and a mildy leaking aortuc valve. My cardiologist stated surgery is considered at 5.5cm . What the don't know yet until they scan me again on the 3rd Jan 18. If the size as increased further that surgery is certainly on the horizon. If it is the same size it will be a watch and wait. Worrying i agree, but that doesn't help..it is what it us and at least its been spotted before it ruptures or dissects . We are lucky, a lot of folk don't know about it until usually its to late. Good luck.

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    • Posted

      Roy I had the exact same including leaky valve. I know it is a very stressful time for you.

      I am now 6 weeks post surgery and feeling great! keep looking forward sometimes just an hour then a night then a day. The surgery is very similar to aCABG. It is good idea not to delay my aneurysm was very similar and expanding so the decision is already made. You are lucky to have discovered it and have possibility of expert surgical intervention. 

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    • Posted

      Thanks for your reply Lloyd. Glad to here you're on the recovery road. Are you in the UK or USA. If you're in the UK where did you have your surgery performed and were you happy with your treatment? Good luck. Roy

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    • Posted

      HI Roy - as a recently diagnosed member of this fortunate club - I say "fortunate" because at least we know. Millions have died from this through not knowing and when it bursts, the survival rate is low.  I am waiting for my second scan in June - your news is "heartening" pardon the pun - may I ask your age ? I am 61

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    • Posted

      Hi Rod. Thanks for your reply...i am 71 in March. I had my second scan recently and due to see the consultant on the 7th March. Stay safe. Roy
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  • Posted

    Hi Bigfife - how are things ? I'm Rod and I'm 61 and live in Melbourne Australia -  I had a routine stress test recently which showed some abnormality and following a MRI scan it has been determined that I have a 5.1 cm thoracic aortic aneurysm - bit of a shock _ I am now on beta blockers and will get another scan in June (6 months from detection) to determine its growth rate. In the meantime, I have been told to do my usual exercise program which includes about 5 to 8km brisk walk every day BUT no lifting heavy weights as this raises the blood pressure very quickly - I am reading a few articles - there is a guy that writes for the Wall Street Journal who has written a couple of good articles about the subject - he was diagnosed years ago at the age of 43 - dilation 4.2cm - he explains the issue very well and also addresses in psychological elements of the condition

    His name is Kevin Helliker

    Here are tow articles that you may care to read - be ready though cos he pulls no punches

    Good luck to us all -  am also continuing to scuba dive - and am planning a trip to Kona to dive with Mantas in April - fark it - if it blows, I'm screwed above or under the water

    Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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  • Posted

    Hi Bigfife I found Kevin Hellikers article very interesting thanks. I don't know why the moderator stopped the link. So I googled him and got it that way. I think he is right to be wary of the instinct to dash for surgery etc - and to come to terms with our mortality which we all have to do...thanks again

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  • Posted

    it is also interesting that Kevin Helliker thejournalist who wrote the Pulitzer prize winning article in 2003 is still symptom free and has not had an op. So all of you google him and read. To be patient and get on with life until it reaches a very critical size - if it ever does - is important.  It is like many things hard to live with. Do all you can to prepare for the future - get the right specialist find the right most experienced centre - don't be dismissed and then with fullest knowledge get on with life. I think it brighten perceptions and makes one even braver.

     

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