New Member

A place for GUCH Patients and their families to exchange experiences and gain support. So please feel free to ask any questions you may have.

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New Member

Postby boxercup » Sat Nov 01, 2014 4:44 pm

Hello All,
I have just discovered the Somerville Foundation and this Forum.
My name is Steve, I am a 57 year old male.
At the age of 54 I was Dignosed with a Bicuspid Aortic Valve and severe Ischemic Heart Disease, I was very sick at the time of my diagnosis and was told it had Calcified and I needed emergency Surgery.
It turns out that I was born with this condition but it had gone undetected for 54 years untill it finally caught up with me.
I now have a Mechanical Valve and had a double bypass, so am now a member of the Zipper club :)
Since my Surgery in 2011 although the surgery was a success I have developed many other issues, I feel very fatigued and light headed especially when I exert myself. During the day I fall asleep without realising it yet at night I find it difficult to sleep, I have Chronic Depression and on occasions have soiled my pants without warning.
I have never felt well enough to work again and have been on ESA in the WRAG for nearly 4 years, But 5 weeks ago all my benefits was stopped due to ATOS and the DWP finding me fit for work. I have asked for a Mandatory reconsideration but have found it hard to get any help from any of the Welfare organisations, except this week I have got an appointment with Salford Welfare Rights.
I have become very stressed out and deeply depressed.
Now I have been five weeks without any income, I am living back at my 80 year old Parents house but they can not afford to keep me on their pension.
I am so sorry if this post is a little long winded, but I hope it makes sense.
Posts: 1
Joined: Sat Nov 01, 2014 4:08 pm

Re: New Member

Postby sandra1xo » Tue Nov 11, 2014 6:11 pm

hi my name is sandra findlay from Aberdeen Scotland . I am just wondering if there is anyone in your group has (ALCAPA) my daughter was born with it did not know until she was 4months of age in 1995 . she was going in2 heart failure when we found out she had surgery in march 1995 . can anyone let me know xxxxxx
Posts: 3
Joined: Tue Nov 11, 2014 5:09 pm

Re: New Member

Postby Ellie1987 » Sun Nov 23, 2014 6:33 pm

Hi Steve,

I trust you had a good 54 years prior to the discovery or did you ever think there might be something up? Yeah ATOS and the DWP are probably one of the most depressing set of groups around and the way they are treating people these days is horrific in many cases (though I'm sure there are some who work hard and limit screwing people over in case anyone takes offence).

I'm fortunate in that I was born with my heart defect so learned how to deal with it. I probably spent most of my childhood and teens being bullied and withdrawn because of my condition but upon leaving schools (I went to 6 in total) behind grew to accept it. I can't imagine how hard it would be to find out so late in life going on the basis it took me almost 20 years to get over it and accept it's who I am. Even still I still wish I could do a whole ton of things which I'm not allowed to do!

I hope that something goes right for you soon, it can really help to read around the forum, you will likely find someone else in a similar boat or find some solid advice on how to make things easier for yourself.
Pulmonary atresia with intact septum & hypoplastic RV
Fontan Repair
1987: left & right BT shunts
1993: bi directional Glenn
1999: modified fenestrated Fontan with Goretex graft from IVC to RA & Amplatz closure of fenestration
1999 to ?: on warfarin
Posts: 10
Joined: Tue Nov 17, 2009 11:59 am
Location: Aberdeen

Re: New Member

Postby Jim_1903 » Sat Nov 29, 2014 7:40 pm

Hi Steve,

I am so sorry to read about your situation, it sounds like you have been through it in recent years.
It must have been a real shock to discover you have a bicuspid aortic valve after 54 years and needed surgery for Ischemic Heart Disease, due to calcification. It must have come as a double blow at the time to discover you had IHD and a congenital heart defect. Thankfully it sounds as though you had very successful surgery. I reckon it must be an extremely frightening experience, I know I always feel any surgery is and to have something so major would be really invasive in terms of your health, work and being able to think past these big issues. My experience has been that it is not always easy to deal with pre or post op. You have obviously been very brave.

Unfortunately it sounds as if you haven't been yourself since the surgery, and certainly dealing with DWP etc (I know about this!) can be very stressful and they are the last people to be understanding. In my humble view, I think you may be best to see if you can speak to your cardiologist as frankly about your symptoms as possible. Also let them know about your income issues and the difficulties with DWP. Quality of Life is very prominent in the NHS now and I just wonder if they might be able to help you?

Best wishes.
Posts: 19
Joined: Fri Feb 17, 2012 11:19 am

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