Taboo Conditions!

We're all more than just our Heart Conditions, so if you want to discuss last nights TV, your favourite sport, or just the price of fish, this is the place.

Moderators: Moderator6, Moderator2, Moderator5, Moderator1, moderator7, Moderator3

Taboo Conditions!

Postby judith » Wed Oct 31, 2012 4:50 pm

Hi,

Some of you know of me already but I have often wandered how many of you share the same reletively secret conditions as me? These are two conditions that I have never heard mentioned within the GUCH world, even though they are both connected with early CHD procedures, don't forget I am over 50!!

Firstly, I have suffered with Epilepsy since I was 9 years old although this was not divulged to my parents until I was 19 when I had a series of fits and was told that it was likely to have been caused by a stroke that I had when I was 9 wks old. Are there many out there that are keeping a similar secret? I have never intended to keep it from people but I know it is a subject that for some reason people don't like talking about.

Secondly, and this mainly affects the ladies amongst us. When I started to develop in the early '70's it was soon realised that my right breast wasn't developing. This never seemed to be talked about until I said it was bothering me when I was 18yrs. Eventually I was given a breast implant on the NHS when I was 21, but it was not until 1999 that I was told tht the reason I needed it was because of the Y shaped scar GOSH had given me (and I assume many other children) in 1968 had cut through a main artery that fed the right breast.

I have never heard this mentioned so are there many other ladies that had the same problem, and if so did they have implants fitted?

I would like to hear from anyone about these subjects.

L Judith Parker
judith
 
Posts: 21
Joined: Tue Apr 25, 2006 4:15 pm

Re: Taboo Conditions!

Postby Jane2Blue » Tue Nov 27, 2012 6:51 pm

Hi

I had a brain abcess after on of my early surgeries - in the early 80s and had some co-ordination difficulties but nothing as sever as epilepsie - I have studied epilepsy and know that people often feel embaraced about it and suffer form strange reactiosn form others. I have dyslexia and some peopel even over react to that which I find very very strange!

I also had the same breast development issues and when my mum asked about this when I was a teen ager the docotos had the attitude that I was mineor compared to the fact that I might not have survivied! Hopefully and attiduted that has changed Obviously brest reduction/ augmentation are large operations and I opted not to subject my selft to the uneccesary cardiac risk but I have a good prosthetic which I got when I was 31 but this was not fun as a tean ager and I hope that peadiatric cardiology now has a much more integrated approach!
Jane2Blue
 
Posts: 83
Joined: Tue Nov 27, 2012 5:47 pm

Re: Taboo Conditions!

Postby paula-43 » Sat Dec 15, 2012 7:14 pm

Hi Girls,
I had a repair of TOF (killingbeck Leeds 1973)and unbeknown to me the surgery did have an effect on my breast development as my left breast was about 2 inch lower than the right, i asumed as i was growing up and developing this was normal for most girls, a bit like we all have one foot bigger than the other!!! so it was never an issue or topic of conversation and they both worked as i feed my son with no difficulties!! lol
It was'nt untill 2001 when i had a PV replacement that i said to my surgeon (for a joke) "any chance you can staighten my breasts up!". After the opp he came round and told me what they'd done durring the surgery , they cut my breast bone in half and restructured it with wires and that my chest was actually in a mess structually from my first opp this was due to the fact i was only 3yrs old and still had a lot of growing/developing to do,
As hubby says he does'nt have to look at them at an angle anymore !!!!! LOL

Paula
TETRALOGY OF FALLOT
REPAIR 1973
paula-43
 
Posts: 127
Joined: Thu Nov 01, 2012 3:02 pm
Location: john o'groats scotland

Re: Taboo Conditions!

Postby maggie » Mon Dec 24, 2012 12:16 am

Hi i also have blebs on the brain just found this out recently after having a scan done, although they are assuring me at the moment not to worry but if i get more side effects to see my doctor, the onlt thing is what are the side effects? I wonder if this has anything to do with my chd? I am so full of questions at times no wonder i get headaches lol. I had my 1st ohs at 9years old and my 2nd at 39years old, my boobs are pretty much looking in defferent directions lol :roll: and i still get a lot of bone pain in sternum , ribcage and breast bone area, does anyone else get this? I have pretty much came to terms with my frankenstien body as i call it but on down days cannot stand to look at myself in the mirror naked...not a pretty sight :( but on the upside iam here, i have 3beautiful children and a beautiful grandchild, a good man by my side and i do enjoy life, very rarely do i feel sorry for myself.
Its nice to come on here and type down feeling and thoughts helps me sort them out in my crazy little head lol :D
Thankyou Maggie
maggie
 
Posts: 2
Joined: Fri Oct 26, 2012 10:02 pm

Re: Taboo Conditions!

Postby louloulolly » Sat Jan 12, 2013 8:40 pm

I was Brain Damaged during my 2nd heart op in 1983 which has left me with co-ordination problems along with other problems. I was also diagnosed with Epilepsy in October last year and am currently trying to get it under control but I will get there eventually.
Louise :)
Born in September, 1982
Coarctation of the Aorta repaired in 1982 and 1983
Had a stroke in May 1983 after 2nd heart op
Small aortic aneurysm found in July 2012
Diagnosed with 2 forms of Epilepsy in October 2012
louloulolly
 
Posts: 257
Joined: Fri Jul 02, 2004 1:20 pm
Location: St Helens, Merseyside


Return to Non-heart Related Topics

Who is online

Users browsing this forum: No registered users and 4 guests