feeling lost

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feeling lost

Postby bubbles20 » Thu Nov 20, 2008 1:18 am

hey am new here and have never spoke to anyone about this. I am 20 years old and was diagnosed with TOF pretty soon after I was born. I have had a number of operation and belive my last was when I was 10. I have been having yearly checkups and was told that a future operation to replace my valve was a possibility. however a date was never set and I always thought it was a LONG way away. I am now at university, living away from home, and have just found out I will need my valve replaced. My doctor has said it can wait till summer. I am really struggling to come to terms with this. I have so many questions but do not know who to ask them to. As I am not at home my parents are dealing with the doctors and stuff. They are being great about this but I am finding it hard to talk to them about this and I am finding it really frustrating that they cant answer my questions - aren't parens meant to have the answers?? I am so scared about this operation and so lost at the minute everything in my life seems to be suffering because of it. Has anyone had a similar operation or does anyone know of someone I ca talk to?[size=18][/size][size=12][/size]
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Postby punya » Thu Nov 20, 2008 10:32 am

Hi Bubbles, I'm a parent of a 19 year old with a complex heart condition and other disabilities. I would love to know everything but I don't. Like you parent are often battling to find the information they need and dealing with the emotional trauma of having a child needing cardiac (and other types of ) surgery. I understand that at this stage in your life your parents are stepping back and letting go of you for to be an adult. This is hard for you as well as them. Do you want them to be totally responsible for your health? You have taken a great step forward in asking question of those who have the direct experience of chd. I understand your fear of surgery and the unknown. Warm hugs to you as your face this. Hope that others here can help you along the path.
Punya
foster mum of Jesse 18 years
pa/ivs, asd, tricuspid incompetence, hypoplastic rv
adhd/autistic spectrum/
mild cerebral palsy
severe scoliosis/kyhposis
Western Australia
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Postby Paul Polo Willgoss » Thu Nov 20, 2008 10:47 am

Hi,

two things that GUCH provides that you might want to tap into...

we have a specialist working with young people details found here - http://www.guch.org.uk/4teens/

And a freephone helpline 0800 854759, the hours its manned are here -

http://www.guch.org.uk/about/helpline

Apart from that ask us questions on the board and someone normally has been through the same or similar and can offer you their experiences...

Take care

Paul
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Postby bubbles20 » Fri Nov 21, 2008 1:14 am

Hi punya I know my parents dont no everything about this and cant no everything about it but when i was little they had the answers n when i had 2 have operations they made everything seem ok. it is only recently that i have started 2 undertsand my 'condition' and i no everyone says that i should no about it now i am old enough but i hate knowing about it. i hate knowing i need surgery. i also hate knowing somethings but not everything. as i am away from home and from my hospital i have asked my parents to deal with the hospital n things because at the moment i cant cope with it. It seems so wierd to be talking about this to people i havent met when i havent told anyone outside of my family about it.

Also paul you said to list quetsions here to see if people had answers (it may be a long list):
- what hppens pre-surgery and do i need to do anytng?
- what will an exersise stress test show?
- what happens after surgery?
- how long will i be in hospital?
- is the operation a risk?
- will my life change post operation?
- will i still be able to have children? i read somewhere i may not be able too?
- how long does it take to recover from the operation?
- how will i feel after the op?
- what can i do to speed up recovery?
to name but a few....
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Postby JillyS » Fri Dec 26, 2008 2:58 pm

Hi Bubbles. I really wish I'd read your post earlier!

I'm 22 and found out I had a serious heart problem in August, and things moved very quickly from there. Ended up having a mechanical heart valve, new aorta and some other bits just over 5 weeks ago now.

Reading your post was like reading my mind a few months ago. Only difference is I'm a physio, so I had the burdeon of knowing exactly what was going on and having to guide my non-medical family through it whilst freaking out myself. But in a way that was better because I have lots of medic friends who did a lot of research for me, so I got answers.

I'll try answer your questions, though as everyone says we're all different. But from the physio side of things, recovery from open heart surgery is a pretty standard process, and i've seen dozens of people - 20 to 85! go through it all pretty much the same.

But with 5 weeks behind me I can say it really is ok! Well, whatever you have done you'll have to have your chest cut and that's the worst of it really, your chest being broken then wired. We're all young here so you'll bounce back fast - I was out in a week. It's just frustrating not being able to lift anything, but I've definitely got used to not having to do the housework! The pain killers they give you sort most of it out and I was feeling pretty comfey within 2 weeks. Next week I start cardiac rehab in the gym, so you can see it's all pretty quick.

KIDS! Man that was a big question in my mind. And initially my cardiac surgeon said no. I didn't believe him so did my own research.. Well, it does depend on you. But the good news is that it's generally all ok. If you have a pig valve then there's no problem - no blood thinners for life - so you just need to make sure you get doctors involved to monitor you when you want to get pregnant and will keep a close eye on you all the way through. If you get a mechanical valve like me you'll have to take warfarin for life to stop your blood clotting on the valve. It's a bit pissy to start with - I'm still getting my levels controlled, but you can eventually test it every day yourself like a diabetic on a machine meaning less needles. However warfarin really affects the development of babies so you have to go onto Clexane - another anticoagulent, which you have to inject into your tummy - every day for the pregnancy and a month before, then back to normal warfarin. There is increased risk of major bleeding with a warfarin pregnancy, but there are plenty of studies to say that if well monitored, clexane babies and monthers do really well with few problems. You just have to be careful. But that's a standard with living on warfarin anyway.

Oooh, more leftover turkey is being carved so I'll stop my ramble there. I have to say this is helping me to talk it all out, so I hope you don't mind! I just recognise myself 3 months ago in what you said. I'll com e back to this later! I hope this helps a bit.

Jilly
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Postby Paul Polo Willgoss » Fri Dec 26, 2008 3:05 pm

Hi,

GUCH has a new leaflet on pregnancy http://www.guch.org.uk/info/Pregnancy.pdf

In terms of individuals and their drugs that will always come down to an individual, their circumstances and what their GUCH consultant suggests is the best.

And thats the other thing make sure you are seeing a GUCH consultant at a GUCH centre - the list of recognised centres is here http://www.guch.org.uk/info/RECOGNISED_GUCH_CENTRES.pdf

Paul
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Postby Livi » Tue Dec 30, 2008 6:42 pm

Hi bubbles, your post just described EXACTLY what I am feeling right now! Its so odd to have your heart condition become a big deal when it has just been in the back of your mind your whole life! I've just been told that I need two valves replaced. I've just turned 19 and my issue is that I am still seeing my paediatric consultant. It is frustrating for me at the moment becuse he is very reluctant to do anything about this operation, even though he has decided I definately need it. My case is frequently discussed between many consultants and the paediatrics are happy the way I am, not thinking about the long term, while the grown ups consultants want me to have the operation befoer symptoms start to develop. Unfortunately symptoms are starting to develop, I'm having major palpitations pretty much everyday, and feel really unfit! Of course I only see the docs once a year, and all I hear is... "hmmm.. we'll think about it and see you next year...", which is irritating now that I know for sure I'll need the second op. I just want it out of the way so I can get back to forgetting I have a heart condition!
Olivia
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Postby Paul Polo Willgoss » Wed Dec 31, 2008 2:03 pm

Livi,

if you're having palpitations nearly every days don't wait for your next apppointment, phone the cardiologist (I'd suggest, based on what you say the adult one) and make an early appointment saying that you're having more symptoms.

Apart from that we're here if you need to rant or rave!

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ongoing problems

Postby superwoman » Wed Dec 31, 2008 9:27 pm

Hi Livi

I totally agree with Paul [that doesnt often happen I should add]. I strongly suggest at the earliest opportunity in the New Year that you get an appt with your Cardiologist as you are obviously having problems if your having daily palpitations.

I would suggest your appt is with the adult team as you will soon be transferring to them permanently anyway and they will be better informed on how to deal with your current condition. The paediatric team deal with children and although they all discuss together and have similar training they are not as geared up to deal with GUCH's and the issues they can have.

Very best of luck and I hope you feel better soon

Gill :D
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Postby emz » Fri Jan 02, 2009 5:27 pm

I know how you are feeling!! About a year ago now I was told the same. although I had lived with my condition my whole life I didnt know what to expect. I had the op around 5 months ago (wow cant believe that). Well it is scary and its the unknown which is worse. I am too 19 and was waiting to go off to uni, so I had mine in the summer before I started. The hospital let me have some input about when it was done, as it was not an emergency. When it was done I thought what was the fuss about? But I know it was hard luckly I had friends and family who supported me!! About the questions do ask because its their job to answer, in the end I think I could of done my own op with the info i was given!!
TAke care and PM if you want xxx
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Postby Livi » Sun Jan 04, 2009 10:18 pm

I was originally told to take a gap year so I could hav the op before uni. That was last year. Now I've realised I just had to go for it and what happens happens. I've just finished my first term. My docs say that they will attempt to fit my op around my life, I assume theyll do the same for you bubbles?
Livi
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Postby Livi » Sun Jan 04, 2009 10:25 pm

Oh and Paul and Gill, I mentioned them, I had an appointment in October. They (again) did a CMR, ECG, exercise test etc and said, we'll look at the results, discuss and see you next year. i think the problem is that my paediatric consultant is retiring, as well as the whole department at the brompton being restructured. At the moment I don't actually know who is my "main" consultant! I was in A&E in November-ish, for chest pain and arythmia, which they now think is due to scarring, and they told me to go back to my consultant in London. When I went there they just gave me the results of my other tests and then ordered a 7day monitor. That I havnt had any results for yet, normally I don't get them until my next appointment. Irritating! haha ok rant over!
Livi
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Postby SG » Sun Jan 04, 2009 11:59 pm

Hey man,

I have the same kind of thing - I had my TOF corrected as a baby, but I've just found out that I have a restricted valve in my heart, which has been causing palpitations and weird, sort of throbbing headaches. Nice.

You'll be okay, really. My dad always says I worry too much to be doing my heart any good, and I think that's the same for all of us. Nothing is ever as bad as it seems.

Keep us posted yeah? x
It's the beat.
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Postby Livi » Mon Jan 05, 2009 11:22 am

You're right, nothing is ever as bad as it seems :D Thanks
Livi
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Postby bubbles20 » Wed Jan 21, 2009 12:33 am

hi lovi so sorry for late reply its coursework deadline time and i've been a very busy girl! omg i've just read over my first post and a LOT has happened since then. well as u probably got from th post i had quite a few questions from then. so a quick run down of whats happened since then; i had a panic attack and got admited to hospital, had a chat with my CLN who explained everything to me, moved back to nottingham for uni, had the exersise test from hell and I'm still waiting on the results.

in regards to your doctors issues ring ur CLN and explain whats going on, how you feel and ask her to sort something out she can talk to the doctors for you and if you only want to deal with the adult doctors tell her he can sort out the trnsfer - she sorted mine out!!
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