I was born with a leaky heart valve and vsd, which was closed when I was 15 in 1996. I have enjoyed 25 years of good health until my my most recent review last year when I was informed that I have reduced left side systolic function and in creased gradients across my valve. I have had an MRI scan in October at Barts hospital and now have a telephone consultation (which has been put back from 10th Dec) with my consultant on 28th January.
Unfortunately my mother passed way on 11t October this year. She had a long cardiac history and nearly died at 29 years of age with endocarditis. I understand that I am in the early stages of grief but my world feels destroyed. She made it to 65 years of age, but in the end her heart just gave out. She had been unwell for the previous 3- 5 years Now I am terrified that I too will end u with a reduced quality of life or worse, not make it this time and cannot stop obsessively thinking about this. I am not enthusiastic about surgery again, but I also am anxious that will be successful and not have a negative impact on my overall wellbeing.
I have had some good times, but my heart condition has always been there in the back of my mind and now it is really wearing my down. I've had enough. I just want, for once in my life to be able to relax!
Thanks for the space to vent to the zipper club family! x
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Seaguller
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Oh my goodness, my heart (mended) goes out to you. You have had such a load to carry and losing your Mother must feel like the last straw.Having your appointment put back until next month can’t be helping. You say you had 15 good years but your heart is always in the back of your mind, well I know it’s in the back of most of our minds when we have a heart issue. I think you need to grieve for your Mother but she would want you to keep fighting, with new valves available you have many many more years of great life in front of you.
Facing maybe another open heart surgery isn’t fun but it’s not that bad. You know how well we are looked after and life will become good again.
I had my Aortic valve replaced and bypass done 5 years ago I am many years older than you, I was in hospital for 7 weeks before my surgery I was so sick they were trying to get me strong enough to be able to get through the op.
Here I am living my life watching my 5 granddaughters grow have just see my eldest start university and the youngest start playing water polo😂
You will be ok your mother will be watching over you and giving you the strength to get through whatever is ahead.
Hey bro I am really sorry for what you are going through. And you chose a perfect platform to vent and seek help. First of all I just want to say I’m sorry for your moms loss and sorry for the situation your in and I’m sorry for the state your in. Your not alone I promise you that, I am 34 years old and was born with HCM hypertrophic cardiomyopathy and now as a result I suffer from Afib and AFlutter I know it’s probably not the same problem you are in but I understand how you feel and how your scared of the unknown. I have a family, I got kids and I got loved ones all around me that remind me everyday not to give up and keep moving forward. My situation has caused me to loose my job and it also pretty much limited me to very little movement and I can’t even go up and down the stairs with out having my heart pump out of my chest. I have had two failed procedures and I’m on a handful of medication. But you have to keep moving forward and think positive. Keep in mind every year medicine and science are advancing so your destiny is not the same as your moms destiny. My mom has the same thing as me and she is healthier than me and is in a better place than I am. But in the end the best thing you can do to your self mentally is to let go of all the negative thoughts and keep reminding yourself that your strong and you will pull through this. Acceptance is key. You could be in a worse situation. I know what your going through and I know the thoughts you go through ( your always assuming the worst case scenario) and the ( what if Statment ) let them go and don’t do any further reaserch and ask your doctors. Google is the devil.
Keep your head up your strong and you can overcome it from what I read about you in your profile.
Hi SeagullerSo sorry for the loss of your mum and to now be facing prospect of heart surgery on top is an awful lot to be dealing with.
Like zeinmassri said it’s really tough living with heart problems especially when we have had them our entire lives but we keep going trying to focus on positives.
It’s not surprising you are concerned but try and think how well your previous surgery has kept you for all these years. I know things need a recheck and upgrade now but hopefully it will help you feel far better for the next 20 years. Like others have said there are new developments all the time who knows what new treatments will be available in the future.
My mum also died recently and it really has made me think of a lot of things and review where I’m at in life. Grief is so powerful and emotional and it’s unique to each of us. I had some counselling from the bereavement team at the hospice which did help. But tbh the best help was making some time for myself to just be quiet and allow whatever emotions to just happen.
I’ve lived with congenital heart disease and had lots of ups and downs but I think all of us that live with heart issues are stronger than we sometimes realise. We keep adapting to unpredictable situations that our hearts throw us into and we figure out new ways to manage.
Surround yourself with kindness accept any support you can ask about counselling and most importantly take time to find something each day to do that brings you some joy even if it’s as simple as having a bubble bath or doing a crossword.
Hello Seaguller, I’m sorry to read of the loss of your mum, she sounds as if she was a strong person too. Allow yourself time to grieve and reflect. Maybe the appointment being moved isn’t a bad thing as it will give you time for this.Medical science is advancing all the time and there are new techniques and procedures being developed all the time.
Totally feel you and understand how you are feeling. I had a open heart op at 15 too, to fix a ventricular septal defect and had my aortic valve replaced in October, after exactly 25 years from my first op. When I was reading your post, I though "Omg that's me!". Living the surgery as an adult and a teenager has been completely different, I had more control on my emotions and in how I prepared for it. And in 25 years the medical science has done huge steps, the memories you have of your previous surgery don't necessarily reflect how it works now in terms of processes and recovery. I was in the hospital for about 20 days and, after two months, I am already going jogging and making great recovery. I am 40, so pretty much your age too. Keep positive and I am sure you will be great 😊
It appears to me that major heart issues do affect us mentally. I can’t fathom why., but it does affect us. So we have to try and try again not to get in to endless depression spirals.
However, you need a few months to grieve over your Mum. If you can grieve for Mum then you can see a time in the not too distant future when you come out of your grieving and this horrid pandemic goes away.
I go to morning prayers on Tuesdays and I will be thinking of you.
Thank you Colin. I guess for me, even during the bestbof times, there has always been that little bit in the back of my mind worrying what is around the corner or if something is going to go wrong. I guess I picked up this anxiety from very young and have ever known anything else.
Sorry to hear about your mum, I too lost my mum this year (unexpectedly), be kind to yourself and allow your self to grieve, there is no time limit on grieving x
I was born with a biscupid aortic valve, I used to have yearly hospital appointments, was told I would never be able to have children ( along with other stuff I was told I wasn't allowed to do!)I was always told that by my mid forties I need surgery, that was 9 years ago now, and had avr and aortic resection surgery, my recovery was straight forward
( mainly) and I can honestly say I feel much better.
I hadn't realised how much it had affected my mental health, I used to hate my hospital appointments, to the point that I still hate going to London even for fun.
You need to explain all your feelings to your consultant and give him the chance to explain your treatment to you and to put your mind at re st. I'm so sorry about your loss; it really hurts not having that special person to rely on and pour out your worries.
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looking for advice and support x
Heart mum 
New very worried member
Aortic valve and pacemaker
Diagnosed today with AF… Bit confused?
