New any advise or thoughts welcome.

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New any advise or thoughts welcome.

Postby James G » Tue Jan 05, 2016 11:45 pm

I found out i had ToF with full repair when i was 3 in 1977 at Brompton (im 41 now) but until february last year after i broke my ankle and queried the blood thinners i was on, as far as i knew i had a basic hole in the heart which i grew up to accept was fixed and didn't need to worry about then the doctor told i had a bit more than that and had tof and had been missed off the check ups for 25 years so i was booked for echos and mri and other tests just last september i was told i had a rh ventricular volume of 200 should be in its 70's so i was put through the needs to be operated on quick list and october had my operation for pulmonary valve replacement (Piggy one), alos been told that this is first of many as they don't last long about 6 years or so. Since then my checkups have been good they told me that the enlargement has slightly gone down. i've been off work prior and since this as having the odd pain and palpitations and to be honest the worry has now giving me major anxiety problems where i'm being told the possible cause of the palpitations is through worrying bit of a loop im trying to get through they have put me on lorazapam to try sort that out. Although my many checkups since being told that i had tof and since the operation i was never told about a shortened life expectancy and was wondering have they not told me this cos i worry and also should i be asking the question or those of us on here whether we can retire early if this is the case, i don't want to work upto the last few years and not enjoy what i could have had, any ideas or is life expectancy different with certain TOFs?? Hope this is ok its my first post and put all my thoughts and worries into this hoping that it will all be ok, not just for me for all of us on here, Happy New Year by the way.
James G
 
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Re: New any advise or thoughts welcome.

Postby Tricky Dicky » Thu Jan 07, 2016 3:08 pm

This is the sort of thing that you could ask the specialist GUCH nurses. Get their contact details from the cardiology department.
Tricky Dicky
 
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Re: New any advise or thoughts welcome.

Postby James G » Fri Jan 08, 2016 8:56 am

Ok thank you i spoke to my liaison nurse, and they have said what to look out for, thank you.
James G
 
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Re: New any advise or thoughts welcome.

Postby Leah1989 » Sat Jul 02, 2016 6:49 pm

Hi I hope u are well.

I'm a bit younger than u I am 27 this year I was born with TOF and had my first piggy valve fitted in Nov 2007. Why they told you they only last 6 years is unreal! I'm nearly 10 years in and going strong. No sign of it being changed yet, yes I've been told it will need to be done but when they cannot say. As long as you are fit and healthy in urself u need to live ur life to the full. TOF should not stop you doing anything.
Leah1989
 
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