Hello, I wondered if anyone else felt like this? I have a very rare heart condition and require open heart surgery very soon. It’s all come as a big shock as I didn’t know I had one.
I don’t feel typical feelings of anger or worry etc. I feel really lonely. Most things in life someone can go through with you or has been through something similar and can relate but I don’t have that with my family or friends.
Dear Chloebw
Waiting was by far the worst part of my experience of OHS. Once I got to hospital there was an instant release of concern. The staff are just fabulous so your unusual feeling of loneliness should melt away
Sooty
Hello 
The shock must have hit you so hard especially as you never knew anything was wrong
The waiting is daunting and yes you do feel alone which is one of the most dreadful feelings that you can experience but you are not alone so many have been where you are needing open heart surgery if it be Bypasses or rare heart conditions and you will get through this and as said the waiting is the worse once in there you will fee in safe hands and before you know it you will be recovering
There are BHF Nurses that you can phone and talk things through who are full of knowledge and so helpful I will put you their number down if you think it might help to talk with them
Keep coming and talking with us to and let us know how you get on
Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm
Yes I get it. Even after my surgery the feeling sometimes overwhelm me and unless somebody has been through it themselves they have no idea.
yep my recovery nurse said she had ten year plus ex patients who still get these bouts of extreme loneliness and feeling withdrawn.
i’m coming up to 2 years end March OHS and 2 years in Oct of ruptured Gallbladder surgery and feel very guilty at times that i survived these traumas as i’ve lost so many friend of my age (70 in April).
it’s easier said , i know but i found doing something all encompassing help break me out of the cycle ( riding my motorcycle or a clip around the ear from the wife. Only joking dear.) the dark winter days are the worst for these feelings to rise up.
sorry for waffle .
Good morning, .....being told you have a heart condition is daunting and I think a lot or us can relate to that feeling of loneliness after being told initially. You are young so I'm sure a lot of your friends won't be able to relate to how you feel because they have no experience of knowing anyone with a heart condition and it may also, as your friends, sound quite scary to them as well. Your operation will most probably have come as quite a shock to your parents too and they are possibly finding it upsetting to deal with. Your surgeon and anaesthetist will go through everything with you before your operation and once you are in hospital you don't really have time to worry but also you will be extremely well looked after and are in the best of hands. See if you can find any other groups specifically for your condition where you can talk openly to people who are going through the same. You haven't mentioned your exact condition but I am sure there are people on this forum who will be able to relate who have the same as you.
I think the way you are feeling is fairly normal and is mostly due to the shock of being told and especially if you have up until now been in good health. Xx
Ihad my aerotic valve surgery at st barts in December ,two years ago, unfortunately there may be a little pain, but you will be well cared for, i was 72 at the time
Hey Chloe, sorry this is happening, it's no fun. I can relate - I was diagnosed with a congential heart defect at the age of 38, totally out of the blue. I had OHS 9 months ago to correct it and I'm doing well now. At the time of diagnosis it was a massive shock. I also had a heart attack which seemed utterly ridiculous - it was due to the defect, but I ended up in rehab with lots of much much older people, few of whom were still working. It felt really unfair to be having to go through all of this so early in life.
This is a great place to meet people who have been through heart issues and surgery at a younger age. There's also a FB group that I found useful for those going through surgery (many of us are in our 30s) and, if your condition is something you were born with, the Somerville Heart Foundation might be helpful.
The surgery is nowhere near as bad as your imagination supposes. OHS is remarkably commonplace and the people caring for you will be specialists in doing so. It's not something you'd volunteer to go through, but it did teach me a lot. I certainly discovered who my friends were! It can feel quite alienating but you can find people to talk to who have gone through and are going through which helps. Shout if you would like to talk or be connected to any of the groups above.
Hello Chloe, Sorry to hear of your problem. Human nature dictates that you'll feel emotions relevant to your situation but you can turn it into a positive. What would have happened if the abnormality hadn't been discovered? You will have your surgery/repair and it will be uncomfortable but strangely satisfying. Your friends and family are probably worried for you but for a lot of people it's preferable to pretend nothing is the matter. You will be alright except for probably feeling, like the vast majority of open heart surgery patients, very emotional (and grateful for getting your life back) irrespective of how "tough" you may or may not be! The road to recovery is long but ultimately rewarding. This forum is a nice crutch to lean on when you need support so I expect to read of your successful journey in the near future. All the very best, and keep us informed, Mitchum.
Chloe.My op nxt Monday.All happened quickly over last 6 months.
Feel anxious like most do pre op but thankful got a second chance to live life fully,hopefully in the future post op.
Like most things in life only when you go through it yourself can you appreciate how people like yourself are feeling.
Keep strong and hopefully we both can see our improvements as the months go by.
hi Chloe. I do feel for you it must have come as a terrible shock.
I had OHS for a new mitral valve and new aerotic valve last January.
I think on a positive for you is that you are young so healing is much quicker than us oldies of 75 lol. Are your family able to give you support? The staff at St Thomas’s in London where I had my surgery were fantastic. How long have u got to wait for your surgery? Hope not too long as the waiting can be stressful for a lot of people. Good luck x
I have to wait 5 months unfortunately
don’t worry. I felt exactly the same. You also experience “why me, what have I done wrong?” It’s difficult to talk to family and friends as you feel they haven’t got a clue about your fears. Waiting for surgery is definitely the most stressful part. The night before I was literally shaking with fear. A lovely nurse chatted with me and gave me the most reassuring hug. The actual operation, just leave it the professionals, they’re highly skilled and dedicated. They carry out these procedures on a routine basis so you’re in great hands. When you wake you’re totally out of it and in ICU so that parts not too bad either. Then they put you on the ward so again you’re well looked after. Just follow all their instructions to the letter and you’ll soon be on the road to recovery. Make sure you walk asap. It’s difficult at first even getting out of bed, carry out the breathing exercises at least once an hour to get your lungs functioning again. I’m now 12 weeks post 3xCABG and doing better than expected. Pre-surgery the Surgeon gave me 100% not to last out 12 months. You’re not on your own, there’s lots of us out there. I joined the zipper club on Facebook which has been tremendously helpful. I will be thinking of you and sending prayers
Hi Chloebw. I thought I would reach out as I have recently been through similar. My diagnosis was a complete shock and I needed open heart surgery, which I waited 5 months for. I am 8 weeks post surgery today. I have felt every emotion, including loneliness, so can empathise with you. I have found chatting with people my age (30) on this platform helpful. Please send me a message if you would like 😊
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