British Heart Foundation
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17 year old facing open heart surgery

Hello all , i'm very new here

Still not 100% sure on how this works but hey it's worth a shot. I'm francesca and i'm 17 . I live with a apparently rare heart condition and the head of pediatric cardiology in france is currently writing a paper on my case. So i can't tell you much about it as i'm not sure myself at the moment. However what i am sure of is that i will have to have open heart surgery in the following year or two. I'm so so so scared but there is such a lack of information for teenagers facing this . It's hard because , im just starting life . And now im going to have to have this scar? What about when i go partying will it show? What about my wedding day? What if it all goes wrong?. So many questions are buzzing around my head and i really need someone to talk to.

This is just a simple ask. If anyone is up to talk to me. Answer some questions and just maybe re assure me, this would be amazing. Please consider this. I don't want to be on my own with this.

Thankyou all .

Cheska

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Hi Cheska

So sorry you've got to go through heart surgery at such a young age. I was diagnosed with a heart murmur and knew then that I would need to have the valve replaced at some stage and was my nitored yearly until finally needing the op when I was 52. I am now 59 and just had my second heart surgery to replace the replacement valve.

You haven't said what surgery you will require but rest assured they wouldn't be contemplating it if it wasn't needed. With regards to the scar, I too was worried about the impact from a confidence point of view, especially as I prefer to wear v-neck tops rather than round neck and the top of the scar would show. At first it was visible but over time it faded until to be honest I forgot about it most of the time. Sometimes I wore a necklace that partially covered it.

There are a lot of us on this forum who have been through various surgeries and are of all different ages, so please post your questions and I'm sure we will be able to support you through this.

Wendy

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Thankyou so much for the advice with the scar it means alot , im so greatful to hear i'm not alone xx

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I belong to another site, one of the members there has had a zip opening tattooed at the top of his, now barely visible scar. They do fade, with a little bio oil, rosehip oil and with such young skin it will be gone in no time.

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I would love tattoos unfortunatley i cannot have them due to my condition and risk of infection x

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Hello Cheska,

welcome to the forum and really sorry to hear of your issues. Hopefully we will be able to help and offer you some advice

regards

Mark

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Thankyou so much i'm so happy i have found this community

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Hi Cheska

I’m sorry to hear about your illness and especially at such a young age. Are you in the UK?, if so I’m sure the BHF have mentioned that they run a teen support group/organise events/put young people in touch with others. It might be worth looking through their website or calling the helpline for some details. If no, you’ve found yourself in a good place to get some support so welcome to the group.

I also have a rare heart condition, mine is affecting the electrics of my heart. Its normally cool to be rare and unique but when it comes to your health rare and unique are certainly not what you want to hear. I know how it feels to be told you have a heart condition so unusual that there is no literature written on how to manage it. On the bright side, you might get a new medical condition named after you 😊

I have also had open heart surgery. For me I didn’t get a chance to get my head around the scar etc as mine was a result of a procedure going wrong and it was an emergency operation (this is extremely rare thank goodness). I had this when I was in my late 30’s so a lot older than you but still, I wasn’t ready to give up on vest tops, v necks and dresses for sure.

I must be honest and I did struggle for a while with my scar, a lot of that had to do with the fact that I felt it represented being very unlucky as opposed to others whose scar represents their life being saved. It hasn’t helped that my scars are hypertrophic which means they were red and raised. Again, unlucky that my skin reacted this way. However, over time (2 years next March) these have flattened out and are going a silvery colour. It’s just about having patience for me – I’ve never been great at that.

I can’t say I’ll ever love my scar(s) but I have learnt to ignore them and that’s good enough for me. I’ve learned that halter necks are fab, I even have halter neck swimming costumes. You can get loads of beautiful/trendy higher neck clothes. As Wendy mentioned you can still wear v necks as you can get necklaces that cover the top of the scar. Also, there are amazing beauty products you can buy to cover scars too, the colours are blended to match your skin tone and they are waterproof and last days so you can go swimming etc. Once my scar has flattened completely I’ll use this. You’ve probably seen videos of people covering tattoos or birth marks with those types of product. In terms of dresses, including your wedding dress, I think by the time you get married the scar will have faded significantly and you’ll be at peace with it, if not, I find that lace really camouflages the scar.

I wish you lots of luck in the journey ahead and please feel free to ask as many questions that you need to to get your head around everything. It’s a bit of a rollercoaster.

Steph x

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thank you so much for taking the time and energy to respond to this , if i'm honest i thought this website wouldn't be up to date and i didn't think anyone would use it! but after my post being up only a couple of hours and already getting mass amounts of support i feel so grateful that i signed up . i do live in the uk and as you suggested looked at the teenager and young people support group , i have signed up and am waiting for an email or phone call to come through. i have also found a group really close to home that i can walk to that meets every month so hopefully this will also be supportive. however it is tough as a lot of the people going through this are older than me in age and it's hard to relate to people who are a lot older. Thankyou so much for all the advice regarding the scar i have taken each and every bit into account. i feel like i might start a journal documenting my heart journey , do you thing this could be helpful ,

thankyou

francesca xx

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Hi Francesca, have you heard of 'Hannah's heartbeat blog? Hannah was born with a very rare heart condition and is so inspirational. I think she is now only a few years older than you so maybe she could help. Regarding your scar... my best friends daughter had major open heart surgery for a very rare condition, five years ago when she was 9, you can see her scar but it hardly shows and she is confident to wear lovely party clothes that don't hide it. I wish you all the very best and hope that you are able to find all the support you need.

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i hadn't heart of Hannah's heart beat blog however i did look it up after your suggestion , she is such an inspiration. there is an option to send her a message on there so after reading a few of her posts i did just that , i know its a long shot at her replying but hey , you never know . i know that sooner or later i will learn to love or live with my scar , but it is such a change to my body i'm scared my boyfriend wont see me as beautiful anymore.

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hi there are people in this group who will help you on your journey.im sorry 2 hear you have a heart condition at such a young age.i was also born with a heart condition which i found out about last year now ive had it fixed with a mechanical valve 5 weeks ago my scar is small compared 2 most ppl as these surgeon s are getting better every day so by the time you have it done you never know they may be able 2 fix your problem threw a small cut or even threw a vain.goodluck and we are all here 2 help xx

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unfortunately mine will have to be open heart , but it is great to know that i am not alone with being born with a condion that was only found later

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Hello Cheska,

I am also new to this site and in the last 2 days have already found a place to go to to express my fears and get some great advice ,I feel I will make new friends on this journey ,I'm sure you will too.

Your post has put my illness into perspective I am 60 and you are 17 but age has no bearing on our fears for our future. As others have already said scars will heal ,my daughter had many operations when she was a baby and has multiple scars on her tummy ,She wears her bikini with pride if any one asked her about them she makes up a funny story like her dad was a magician and it went a bit wrong when he sawed her in half 😉 my brother also had bad scars on his face after an accident at 13 the surgeon recommended pure wheatgerm oil and it worked wonders..but what I'm trying to say is after your operation you will be well and the scars will no longer matter you will be able to have all the fun you want and you will be a beautiful bride on your wedding day no matter what.

Do look for the teenage forum and the blog that was recommended by others on here talking to people your own age will help but I know you have now found a place to talk opening about you and your journey through this . Jax x

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i was scared that i would post on this site and no replies would come through but quite the opposite happened , i feel as though the people here are one big supportive hand and it so far has been great to speak to people going through similar things , the jokes your daughter makes are a great way of dealing with things , i think i am mostly scared as i also have self harmed badly in the past and my legs and arms do have significant scars from this , i just don't want another one to add to the bunch you know?. it seems horrible now , i was born with a lovely clear body just for it to get ruin by my own sadness and illness .

i hope to hear from you soon

francesca xx

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Bless you,

At least you talk about the self harming as a thing of the past ...you have a lot to deal with for a young woman but don't let your illness define you or your thoughts. try and be positive and look for the good in each day .I teach young people of your age and know how difficult everyday life can be for them added to this you are scared of what is to come .but i think you have found a safe place to air your fears and get good advice on this forum ..take care and be kind to yourself .Jax

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Sorry to say this but my scar shows itself in everyday life. I try to make sure my tee shirts get right up to the neckline as i hate wearing tops with a high neck but that’s another option. I’m planning my wedding day but trying to choose a dress that don’t show it. I don’t party thank goodness as I’m tee total for faith reasons. As a young adult it’s hard to be out knowing ur scar might show, let alone big events where I have to look nice. I’ve grown up with my scar but it makes no difference it’s still there. I came close to open heart surgery a few years ago but they managed to do it keyhole. Wen I thought about it I knew my scar was already there but I didn’t want a longer recovery time as I was going n college at the time. I can’t remember my open heart surgery but I’ve heard u will be put on valve t for a couple of days.

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thank you for the advice with the scar it is good to know people carry on with everything after these operations and it's good to know i am not alone in how i am feeling

francesca

xx

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Hi Francesca I had heart surgery at 20, so not much older than you are now.

Scaring is a very individual thing. Personally alongside my heart surgery I have had 5 other life saving surgeries that have each given their own individual scar.

My heart surgery scar comes up high enough that it shows with some shirts but is easily concealed with others (and to be honest most shirts) so it is totally my discretion if its on show. When it is on show it only rises about 1-2 cm above my shirt and if my shirt which is of the height of a sports bra. Also in the six months since my heart surgery last July the scar has faded a lot. No the scar is more like the pink of the back of a nail therefore is very near the colour of my actual skin. The bit of my scar that shows is only about 2-3mm the rest of the scar is not even a mm in width. My scars are not invisible but are neat.

The most important factor in the neatness of the scar is to prevent it becoming infected so follow all instructions very carefully and once discharged pay attention to any symptoms that may indicate infection. If you have scared yourself with any of the ugly pictures on the Internet of large heart surgery scars it is likely these particularly ugly ones did become infected. The chance of this is about 1/100 operations so fairly low.

Many heart operations now carried out have very high survival rates and very low rates of complication (less than 3/100). I know some of the complications are very overwhelming to consider at our age. I will be honest if you do not go through with it the outcome will already be decided but being brave and facing the risk you will give yourself a fighting chance .

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Just a tip recently on one of these medical documentaries there was a young lady in her twenties who needed surgery and although this is in its very early stages of possibility they did the surgery up under her rib cage and although it was still a scar it was at the side so maybe when at your next appointment mention it.

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Hi Cheskalane

You have come to the right place for support, the folk on here are of all different ages and most heart conditions are also covered, so you are not alone. I’m 21wks post op AVR

Had no idea I had a problem, so it was all a total shock. I can’t take away your fears because they are natural, but I can reassure you that’s it’s not half as bad as your imagination leads you to believe . Regarding the scar that’s left the surgeons are so aware of how it could effect your life, especially someone as young as yourself. the outer is now glued and mine is in my natural cleavage line, the top part which shows is practically invisible and the bottom bit is within bra band . I used Bio Oil every day and when I could I gently exfoliate it when I shower. After just 21 wks most people don’t even notice it. Whenever you need our support and to share our experiences just ask. You are going to have a long and happy life ahead of you . It’s hard but try and not imagine the worse. Have a good new year. Kaz❤️💖💕

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Hi there Cheska, I am thinking of you, and I can understand your concerns, although It's been many years since having my 17th birthday facing surgery is scary for most of us. There have been several suggestions on here with using bio oil or rosehip oil on the scar to assist with healing etc..maybe you could chat with your cardiac nurse for advise on this? I hope this helps you Cheska. Take care.

Regards

Sandra

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My granddaughter has had several open heart surgeries and two through her back. She struggled with the scars initially but now she says the scars are other people's problem. She will be 23 next week. At 15 she was at a wedding and was asked why she didn't cover the scar. Her answer was that it was not a problem to her, the scars were why she was alive. She always protects the scars from the sun.

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Hi Cheska,

i'm new here, and just read your post. i don't have a unique heart condition, although it's not exactly common either! i had heart surgery 2 and a half years ago, i was 15 at the time, so i know a little of what it's like having surgery as a teenager. the scar isn't too bad, i also had open heart surgery as a baby, so I've had it all my life. it's quite fun making up stories of how you got like, i like pretending i got bitten by a shark! there are also quite a lot of things you can do, there are special creams specifically for scars to cover it and/or to help it heal and fade, although don't put anything on it until it's healed properly by itself, just in case it gets infected. you can also get plastic surgery for it i think. it's also a good conversation starter. i call it my Badge of Bravery, and it is quite funny when i tell people how i got it, as most of them swear, and say, "wow, that's Brave!"but the weird thing is, the hardest thing is during the recovery stage, and probably the worst part of that is that your not in control of it, therefore there's nothing really to be brave about. although i'm not going to lie having open heart surgery isn't easy, and it will change your life in ways you won't think of. for me it was a very tough time, but if i could go back and change my decision i would never do it! one good thing about it being a really big operation, is that nobody will except you to recover quickly, you can go at your own passe. Also, i don't know whether you've had other operations before, but in small operations, they put you sleep, you wake up as if from a light nap. with a big operation they use much stronger doses and you're asleep for a lot longer. i can't remember even what time of day it was when i woke - the first day was very dreamlike. i remember how vivid it felt, but nothing else, it's a weird sensation to try to describe. but the worst bits are the most blurred out, if that makes sense. anyway, sorry for blabbing on a bit, but any questions or concerns you have about he surgery and stuff, i'm happy to try an help! :)

Katie

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Hello.. I’m 12 weeks post op (triple bypass open heart surgery) so I know what you’re about to do... I won’t shit you, the recovery pain is real but please take care of your mental health afterwards as well... that part was/is truly unexpected.... I have trouble “letting go” at night to fall asleep .. they say that’s common.. I hate it!!! On a lighter note.. I do feel MUCH MUCH better!!

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Vitamin E oil can completely remove scars after a few months

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