Helping Older and Less Able GUCHs

A place exclusively for people aged 39 and over to discuss issues affecting older GUCHs

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Helping Older and Less Able GUCHs

Postby judith » Tue Aug 31, 2010 3:53 pm

As many of you know, I am a GUCH patient in my late 40's. I had been a patient at Great Ormond Street Hospital and then The National Heart Hospital from the age of 10 weeks. This life long care has resulted in numerous trips to theatre for Open Heart Surgery and several cardiac procedures, all of which enabled me to have a relatively normal education, career and long term relationships/marriage.

over the last 10 years I have noticed that I am gradually having many other limitations now. My energy levels are far less and I have had to re-adjust my daily life to one that is much less strssful and demanding. I have also been diagnosed with various other complaintsand I have been told that these conditions have been brought on at an earlier age because of long term drug treatment and possibly by the numerous trips to theatre. I have learned to submit to my new limitations and not to be too proud to ask for help, which I believe includes having this forum for older/less able GUCHs who may otherwise be too embarrassed to voice their fears/anxieties to GUCHs who, as yet, may not have these issues.

I look forward to reading many constructive comments.
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helping older and less able Guch's

Postby Forlyd » Sun Sep 05, 2010 10:06 pm

Hello Judith,
62 year old Lydia here.
It would be foolish of any of us Guch's to imagine we can reach what non Guch's would class as old age, in the same condition as healthy people are at that age !
We have to accept that, due to our heart conditions, our bodies have not stood the test of time as well preserved as healthy people's bodies have.
Even Guch's who have had surgery since the nineteen eighties, have a much better prognosis than those who had surgery 50 or 60 years ago. So much has been learned that I venture to say that 60 or 70 year old Guch's will be the norm in 10 or 20 years time !
In my case, surgery in 1952 left me with the effects of a stroke. How often do you hear of a stroke during open heart surgery nowadays ?
Aging Guch's find their ability to walk gets less and less.
Energy levels decline. Breathing becomes more laboured. Because they are unable to excercise, their muscles become weaker and housework ,cooking etc become so much harder.
I am lucky to have a husband who is prepared to do all the work I am too weak to do. But I think about how long he can carry on without causing himself harm.
These are only a tiny fraction of the things old Guch's think about. Notice I say "Think" not "Worry". Worry or stress is a Guch's worst enemy.
But don't imagine I have given up. Oh no. I have just had my ICD replaced and my cardiologist says, by continuing my medications and with help from hubby, I can go on for another ten years. Will hubby last that long ? Ouch !
Take care Judith, love from Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
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Postby Ruth » Mon Sep 06, 2010 11:05 am

Hello everyone! I'd not looked at the GUCH message boards for a little while and this was obviously a timely visit. I'm now 44 and feel pretty good. Some might wonder why a message board is needed for "older" GUCHs and it'll be interesting to see how it takes off but our needs and interests can be different to those in their 20s and early 30s. For a start, most of us were born when surgery was completely different, no scans during pregnancy etc. I know my parents were told that a valve replacement was unsuitable when I was younger but medicine's moved on and I had one when I was 36.

After my second OHS in 1978, I was moved to an adult consultant for the simple reason I was very tall (I stopped growing aged 13 - I'm 5'10"). It seems unbelievable now but it's true. So for years and years I was the youngest in the clinic (a "Young Person's" clinic was trialled when I was about 16/17 but was unsuccessful). I found out about GUCH accidentally after it had been going for a couple of years, despite having been a patient at the Brompton since 1971. It was never suggested by my doctors that I transfer to a GUCH consultant but I finally did three years ago. So pleased I did. At my appointment at Prof Gatzoulis's clinic in August, I actually felt old waiting alongside some of the youngsters. I wasn't going to start complaining, though, as at 40 I was still feeling young in the other outpatient clinics!

I was very involved with GUCH about ten years ago but my life these days revolves around my husband - who has also suffered ill health - and my two wonderful sons, now aged 15 and 11. It still amazes me that I was able to give birth twice! I hope to become more involved again sometime.

It made me smile when you talk about life expectancy, Lydia - earlier this year I was diagnosed with skin cancer and had to have a skin graft on my nose from where a mole was removed. My OHS scars don't bother me (although they did in my teens - always find it interesting reading youngsters' views on this - you do get over it) but I HATE the one on my nose which is still healing. Luckily, the cancer was completely removed and I don't need further treatment but during the worrying time, I did think "hang on a minute, this isn't part of the script - it's my heart condition that'll be the end of me and hopefully not for a long time yet....!". Daft, I know..

Anyway, here's to all of us older GUCHs. Hopefully, some youngsters will drop by too and see what we're up to.

Ruth :D
Last edited by Ruth on Thu Sep 09, 2010 2:07 pm, edited 1 time in total.
Born 1966
Aortic stenosis
Corrective Surgery 1974 & 1978
Two wonderful boys born 1995 & 1998
Aortic valve replaced 2002 - now have St Jude's mechanical valve
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Pioneering Older GUCH

Postby Lisa F » Thu Sep 09, 2010 8:49 am

Love this new section - I've offically reached 'Old Age' when I was younger the doctors told my parents I wouldn't reach my 10th birthday!!!!

Enter Donald Ross who perfomed the then rarely used SWITCH operation on me. It was rarely used as all pervious surgeries using this method had been unsuccessful. So I am officially the first successful Switch patient in the UK. The operation was performed in 1976 and I was seven years old, it was done at the National Heart Hospital in London.

After my operation I could do things I couldn't do before like ride my bike and play out with my friends, walk to school and things like that but over the years the effect of having the blood flowing round my body the wrong way has taken it's toll.

I have developed Pulmonary Hypertension and now can not walk very far at all without getting out of breath. I do most things like housework and going out but I do have to take my time.

I have has a few problems over the last few years and have at least three hospital visits a year (sometimes more) with multiple PE's and lots of bouts of AF but I'm not complaining I defied those doctors who 40 years ago told my mum to take me home and enjoy me while she had me and have lived 30 years longer than they said I would.
Lisa F
VSD, TGA 1969.
Palliative arterial switch 1976 - Donald Ross
Eisenmengers Syndrome
PE's x 4
Atrial Fibrillation x 7 - all cardioverted
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Lisa F
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Postby rachel20 » Tue Sep 14, 2010 1:32 pm

Hi there I think it's a fantastic idea having a 39 plus bit! I was very lucky in that my condition did not impact to much on my life until i reached 35 and then had ohs for sub aortic stenosis . I do feel it's impacting on my life now though. I'm getting more symptoms now and sometime will prob have to have surgery again. I never got paranoid about my condition but I do now so maybe as you get older you worry more about looking after yourself cos I sure didn't when I was young. I thought I was indestructable then.Rachel
sub aortic stenosis repair 1998 leaky aortic valve (moderate)
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Postby magnus » Tue Sep 14, 2010 10:26 pm

I like this new area....

from my perspective I may live longer than someone who is not routinely prodded / poked / assessed by medical staff...

Even if my heart is fine, (relatively), having annual / bi-annual / whatever checkups focuses the mind on long term health issues, so hopefully I will live longer than those in blissful ignorance :-)

Just have to persuade the insurance profession of such.

Cheers M.
VSD etc corrected in 1977
Scottish, but now in South Wales
Married to Anna, with school boy James and toddler Amy......
........not forgetting the mad puppy terrorist called Milo.
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Postby Annette » Thu Sep 16, 2010 6:56 pm

This is a great idea, I was beginning to think only the young GUch's post on here as we older one's have voiced most of our concerns already.
I'm an amazing 57, can't believe it myself as 2 years ago my consultant was telling my very solomly that my heart was getting very tired. But I've behaved myself I don't try to do half as much as before; the oxygen is on every night plus about 2 hrs in the afternoon; Most importantly lots of friends are praying for me.
I am so much better and I no longer resent the post dinner lie down even though it reminds my of Grandma: It gives me time to have a nap, read a book or work on the laptop in comfort, and my ankles are staying normal even the leg with the prize winning varicose vein twisting up it. If it's a good morning I even potter on our allotment. (no digging though).
I think we have to give ourselves permission to stop trying to prove we can operated on an aqual playing field to those with no chd. Retirement has arrived early and I'm enjoying the freedom from the 'ought to's
Best wishes to all you long-lived Guch's who are going on amazing the medics. A :) xx
1953 born with tricuspid atresia, single ventricle. 1980 Glen proceedure, (Mr Abrams. 1997 Modified Fontan (Mr W Brawn). both in B'ham
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Postby arty » Sun Oct 03, 2010 9:43 pm

Hello, just dipping my toe in the water here for the first time. How good to have a guch forum for 39 plus. Although I am well past 39, actually just 64 a few weeks ago. Am I the oldest? I am a late diagnosed guch, so never knew I had any heart problem until about 15 years ago. I will now keep popping back to this forum. Thank you to the person who started it.
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Postby tiggersam » Fri Oct 15, 2010 7:41 am

Just wanted to add my thanks as well for this over 39's forum.

I am 43 and I do feel that us "older GUCH's" can find ourselves facing ongoing problems that have yet to impact on the younger ones .

I did also start a thread entitled "when the cared for becomes the carer" I was just wondering how many of us were also carers to other family members ?

Repair of VSD and pulomonary stenosis 1972 @ GOSH
RBBB and light leak from pulmonary valve
type two diabetic
Primary Ovarian Failure
oesteoarthritus - bone and joint problems - poss heart related
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Postby jules007 » Fri Dec 03, 2010 9:17 pm

Well a pretty old TGA'er here at 46 :roll:

Not going to be labelled as old though so this is not really the place I would rather be. :lol:
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Postby Rab » Mon Jan 31, 2011 6:46 pm

I am within 15 mths of getting my state pension and I have been retired on a civil service type pension for 14 years. I have had three open heart operations since 51 years ago at the age of 12 (Guys). I have the mental age of about 20. I tend to think that I can do things that I used to do eg. tried to ice-skate on holiday last May and ended up, up-ended (after 10 seconds) flat on my back and a bad headache for a day - ought to have known better. Still I enjoy life even with the occasional aches and pains. The two main milestones for me have been; reaching pension age and to stop having to work twice as hard as everyone else just to prove my existence and also to become a grandfather thanks to the efforts of my youngest child and her husband. :)
Stretch Valve 1959/60 Guys Hospital
Aortic valve Homograft July 1971 Nat. Heart Hospital
Artifical St Judes replacement valve April 1981
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Postby Scottie » Mon Jun 20, 2011 10:06 pm

Hi ..I'm 51 born with ToF ,repaired in Dundee in 1966, The Hammersmith in London in 1972 ,then had a valve repaired and thickened muscle cut away in 1992 and awaiting a valve replacement, more cutting and a by pass in the autumn. I have three children 25, 24 and a girl of 18 at university. I live in the Highlands and am the only GUCH I have ever met. I work full time and although I get tired and my legs get heavy I feel blessed to have done so much after my mother was told I might see 3 but would never see 5 . Nice to "meet" so many others in the same boat.
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Postby susan manley » Sun Jan 29, 2012 5:04 pm

I should like to add my pennyworth and sy that this 39+ area is a good idea.
Although I have managed to live to 59 with a continuosly short life expectancy suddenly I am being told I could do at least another 10 years...and feel to tired and broke to make the most of it!!!!!!!
:lol: :lol:
susan manley
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Postby jules2009 » Sun Apr 01, 2012 8:53 pm

I think 39 Plus is a great idea. It's is painfully obviously that as you grow older your body changes and we are bound to have questions that the young ones don't have.

I've just celebrated my 47th birthday. Not bad for someone who they didnt think would make her 8th birthday and given a 50/50 chance of surviving the operation.

My childhood friend unfortunately lost her sister to TofF as a toddler a couple of years after I had my operation. She died on the operating table and she always had much more energy than I ever had. So I know how lucky i am.

And I have been really lucky that ive lived my life with no complications and am married with three children. As I grow older I've began to look at life as every year, every day even as a bonus given the odds of surviving as a child.

I have always worked and run a home and would love to reach retirement so I can relax at last but I know I have to be realistic that this may not happen.

I've been getting really tired lately but keep getting told that my heart is hasnt changed and my tiredness isnt related to heart. Maybe it is just my age....everything else always gets blamed onto

The question that is always in my mind these days is how old is the oldest TofF patient? Does anyone know?


Age 45
Correction of tetrology of fallot age 7
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Postby debs » Tue Aug 21, 2012 9:05 pm

iam 48 and have got ebstiens anomaly recently been told i have started the menapause hot sweats are a nightmare cant take anything like hrt so doc said soya would help finding this very hard.along side my aches,pains and generally feeling very old
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