Firstly I hope everyone is doing well.I have a favour to ask. My daughter in her mid 30s is about to have OHS. She has congenital sub aortic stenosis. I have been trying to support her as best I can but she would really like to talk to someone who has had this op as an adult as most people the condition is discovered when they are young, hers was discoveredabout 30 years old. She has a young daughter of her own and is very afraid of not seeing her grow up.
So is there anyone out there with a similar story who can reassure her with their own story, I would be so grateful thanks for reading
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kayree176
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I was chatting to another member on here the other day, who is in her early thirties, had heart issues since a youngster, has just had her 4th major surgery and has a 9 month old baby girl. Her story was inspirational. Her member name is ‘Comfs’. Perhaps your Daughter could message her for some reassurance?
In the meantime, I had O.H.S for a mitral valve replacement 11 months ago, something I never expected to have done in my forties. It is a hugely scary time, but as literally thousands of members on this forum who have walked in your Daughter’s shoes can testify, you do - somehow, get through it.
I didn’t discover this forum until 8 months after my operation. I wish I’d been made aware of it before. The only other person I knew of personally at the time prior to my op, who had been through my surgery, was in his 70s - who incidentally had a shorter recovery than me!
So, I think your Daughter will find this site useful to help with any queries she has. Wishing her a speedy recovery and sending you all every best wish. ❤️🩹
Hello - I had Severe stenosis of a bicuspid aortic valve. The valve was a congenital heart defect that I'd been blissfully unaware of until the age of 54 when I started fainting when running and seeing stars when walking.
My valve was replaced 2 years ago and all fine now.
The surgery is routine to the amazing surgeons even though it's traumatic and anxiety inducing to us.
I'm a member of a Facebook group... UK Aortic and Heart Defects Pre and Post surgery which is largely made up of those of us who have had surgery and those waiting, but also family members looking to support their loved ones.
We have regular Zoom support sessions and they really helped to reassure me.
Some of those in the group have young families too and may be able to chat to your daughter and answer any concerns, so I'd definitely recommend joining.
Hi Kayree, from one parent to another I understand how you and your daughter must be feeling and i wish you both well.. My son who is now 25 was born with a congenital birth defect called tetralogy of fallot and underwent surgery a day after he was born for a shunt operation and we did not know he was unwell till after he was born so it came as a bit of a shock to say the least. The operation went well and we as a family carried on as normal and he grew stronger. At six months old he had open heart surgery to replace the conduit and he recovered well. As the years went by he had a stent fitted and then 3 more balloon operations to widen the opening. My son has always been active playing football, walking up mountains and working out which has helped him in his recovery and fitness levels which I think helped him back in 2022. While he was on holiday and waiting to board the plane home he felt terrible couldn't walk and came close to passing out but he somehow managed to get on the plane...he thought it was sun stroke. The following morning he came home complaining of feeling unwell and nearly collapsed so we rushed him to hospital to get checked out. He had caught sepsis and had endocarditis so after spending a week in hospital he was moved to another specialist hospital for treatment. They continued to run more test and he ended up on a ventilator ,100% oxygen and lots of antibiotics to clear out the sepsis, he was jaundiced, and his organs started to fail so after being in hospital for 2 weeks they operated on him. He was in theatre for 8 hours which as parents feels like 8 days to replace the conduit plus other work but I'm pleased to say the operation went well and he was sitting up in bed talking to me and his mum soon after. He spent another 3 weeks in hospital due to the sepsis and another 4 weeks at home on a iv drip to treat the infection and build up his strength . My son has now fully recovered and is back to his normal self keeping fit and loving life. Not long after the operation we both walked up snowdon which I struggled with more than him physically and emotionally 😂.So please share this with your daughter and I hope you can both take some comfort in knowing that no matter how bad things may look please try to be positive and everything will be ok.
Sorry about the long winded story but I've never spoken to anyone about it so it helps me to share it with you and everyone else here too.x
My daughter is 35 she was born with a bicuspid valve and had her first OHS at 10 weeks for aortic stenosis.
She remained very healthy through out her childhood and teens with just a few limitations. She had annual checkups and was told she would probably need further surgery when she was older. At the age of 29 she had the Ross procedure. Her recovery was very quick. She got married the following year and has two beautiful little boys since.
hi Kayree, I discovered I needed OHS when I was 37 and had my aortic valve replaced and a bypass. I’m now 56 and have 5 surgeries, my aortic valve replaced 3 times and my mitral twice. OHS sounds scary but the thought of it, I’ve found, is worse than the surgery itself. I opted for a tissue valve initially as I was still at an age where i may have wanted children. However, knowing what I know now, depending on whether your daughter wants to add to her family, I would have opted for a mechanical valve which my mitral valve now is. Still got to have my aortic valve replaced again but at the moment, it’s still going strong at 12 years old. Yes, it takes a little getting over and she’ll need help initially with basic tasks. The worse thing for me was how it affected my mental health which has significantly improved over the years. It’s a shame it took so many surgeries before I discovered this fantastic site where there are always people who’ll pick you up if you’re having a bad day and can give a few words of encouragement. I’m slowing down a bit now and 5nsurgeries in less than 20nyears have taken their toll. But, I still live a full and fairly active life and am eternally grateful for my amazing surgeons who have ensured I’m still here. Hoping for many more years of it. It changes how you view life and makes you realise how precious it is. Give your daughter a big hug from us all here. She’ll be OK
hello hope you guys are a okay ❤️ I’ve had 4 open heart surgeries and I’m 32, I also have a young daughter who is 9 months old. My biggest fear was not being able to see her grow up, I was anxious from the day I fell pregnant with her to the last day of seeing her before my operation 7 weeks ago.
I know how scary it can feel and it’s an awful feeling, it makes me extremely grateful to have my little girl and you cherish literally every single second with them more so than you would normally.
hi there a very scary time , but a lovely lady in here said before my ohs when I feared I wouldn’t see Christmas ! They now do more ohs than have teeth extracted ! That’s not to say it’s a doddle but for heart surgeons this is their day job and they do lots . However it’s your daughters one and only so it will be scary but … I always say it’s worse for the family . They wait while you the patient know nothing , the first week post op is a bit of a car crash but the staff guide and support you every step . I was home after 5 days and back to work in 3 months . She’ll need help at home no lifting and you are very wiped out from the anaesthetic. But the main focus here is …. recovery and how much better her health and life quality will be . I couldn’t move quickly walk to the end of the garden , and had to stop working ; 2 years on I regularly walk 5-7 miles work at a job I love and look forward to many future Christmas’s ! Good luck to you and your family and look to a healthy future !!
Hello, today is Wednesday. On Monday I had OHS. Yesterday was rough but today I woke up feeling sprightly. I'm up and walking. I'm having spurts of energy then just going to sleep, but I don't feel sickly. What I do know is the more positive you are and the fitter you are everything is easier. I didn't have the same operation as your daughter. Just mitral valve ring replacement, they repaired the cusps because then I don't need to take warfarin. Please tell your daughter the operation is just a few hours. She will have a good quality life and many years with her young family. They are worth fighting for ❤️
If it helps, I had a congential heart defect discovered in my 30s and my OHS at age 38 last year. It was a massive shock as I was healthy and very active and had no symptoms. I am now more or less back to normal. I wrote a blog about the whole thing which you can access through my profile.
It is very isolating at first because no one else in your personal circles will have lived through something like this, but when you hear from others who are closer to your age getting through the op it becomes a lot less strange. She will be absolutely fine, honestly. The recovery is fairly long but just take it steady, you're not in lots of pain, you can do things just slower and with more care, and every new 'first' post op feels miraculous!
I currently thirty four years of age, female born with congenital heart disease and just had my third valve replacement three months ago.
Even though my heart condition was present at birth and I have grown up with it, the operations and appointments are ongoing.
I am now at the stage in my life where I need to have the chat about having my own family, this was on the cards two years ago but I have been waiting for the valve replacement.
I can understand how your daughter feels with young family of her own and the uncertainty.
I would encourage her to come on this forum, I was 37 with two young children when they discovered my congenital heart condition had gone unnoticed. I felt very alone and fearful for my two, but when I came on here I got so much support and advice. The best thing was finding lots of people my age with similar stories and sharing the journey with them. It was a long road, but now 3 months post OHS I finally feel like a mum again xx
Firstly can I thank you all for sharing your amazing stories of courage and perseverance. I have screen shot them for my daughter and suggested she join this amazingly supportive community. I am not great with words but thank you all again xx
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