Hi community,
I am 30 year old female I had a valve replacement two years ago born with a bicuspid aortic valve. I have also recently been diagnosed with recurring Pericarditis, I am really struggling adjusting with my mental health and my physical health and wanted to out reach to see how others were coping?
Aw good your post was accepted! I sent you another message on the chat hun x hope your coping ok with the pericarditis? I know it can really affect you mentally having a chronic illness. 💔
hi. Welcome to the forum, I'm gutted that you are going through this at your age (or any age really). I hope they are getting the pericarditis sorted out and that you start to feel better very soon. There are tons of us on this forum who have had valve replacements and plenty more who have a variety of heart problems. There’s a lot of support on this forum so please don’t think that you are on your own. X
Hi Liss - I'm afraid I can't help with valve or pericarditis queries unfortunately (my situation was heart attack & bypass) but just wanted to send you a very warm welcome to the forum. There are lots of very knowledgeable people here who, I'm sure, will be able to help much better than I. Please keep in touch as the support of the members of the forum is invaluable. Sending you every best wish for a successful resolution. Carol x
Sorry to hear of your problem. The one thing I will ask. Are you being seen by an adult cardiology team. Most large hospitals will have them. And as you where born with a congenital issue you can look up the Somerville heart foundation. My cardiac nurse at my adult congenital heart team at Norwich put me onto them. It is a good place to get advice and information and to talk to other congenital heart patients.
Hi Felly,
Yes I am an out patients of St Barts in London, however they want nothing to do with me with my struggles around Pericarditis so I am also an outpatient of Watford general, which is not ideal!
Thank you so much for sharing the Somerville Heart Foundation - looks like it has lots of amazing information!
Glad I could help. Barts have seen my notes. I will just have see what the future hold, but it just the mental struggle.
hi there. I had my first OHS at 37 and have since had a further 4. People see you and you look ok. You sounds ok. They ask you how you are and you say fine. Unless people have been through what we all have, they’ll never know and that plays with your mind. Does it get better? Yes, it does. Does it ever go away? No, probably not. Can you live with it? Definitely. For me, and I don’t want to speak for anyone else on here, it has made me stronger in some ways and has made me live a better life in that I do what makes me ( and those I love around me) happy. I still have bad days and that is why I stay on this forum so that those days when I don’t feel so great, I know someone else that does understand, will pick me up. You’ll be ok x
Hi Claire,
Thank you so much for your reply, and I am sorry to hear that you have had 4 OHS surgeries, that must have been so tough, and I hope you are doing okay!
That is exactly how I feel! People look at me and think I am fine, I have missed so many social events as particularly with the Pericarditis sometimes the pain is so bad and I am so tired I have to stay in bed and I feel people think "oh she's always ill" or "surely its not that bad" so I feel like I have to keep pretending and be happy and smiley and then when I am home I feel so alone and upset, as like you say unless you have gone through it and all the trauma that comes with open heart surgery no one understands.
Yes you are so right about doing what makes you happy, whats the point of doing stuff you don't like when we have endured so much pain already. Everyone on this forum has been amazing and I can't believe its taken me so long to sign up! Hopefully I can start pulling some strength from all these experience's and be strong when the days are hard and pull myself forward x
Hi Liss-x30I find that exercising helps with my mental health, but only managed to build that back up again after Cardiac rehab. Did you get that after your surgery?
If you aren't already a member of UK Aortic and Heart Defects Pre and Post surgery Facebook group you may want to join. Everyone has either been through or is going through a journey with heart surgery and they have been invaluable to me
Joanne
😁
Hello Liss, I also was born with a BAV and it has not been easy since my valve replacement.I opted for a mechanical valve so I'm on the blood thinners every day and also beta blockers.
It has been a struggle for me also both physically and phycologically and unless you have been through it "like we have" nobody will ever understand.
Oh and BTW I have a pacemaker as well cause the surgeon damaged my av node so I'm relying on a circuit board and batteries to keep me alive.
I had my BAV replaced on November third, 2020 (Election Day here in the USA) and was told to expect to have greatly increased stamina and feel 20 years younger. Well, none of that ever happened, not even close! I've had trouble walking for any extended period of time, and I can't even explain quite why I feel like I can't continue. I'm not out of breath, but I just feel like I have to stop and sit down for a rest. Unfortunately I've gained a lot of weight too, like 20 pounds. I'm only 60 now, so not THAT old but definitely no "spring chicken" anymore either. It seems like my condition is degrading faster than it might have without the operation, but of course that's impossible to say for sure.
Hi Liss-x30,sorry to hear your struggling with mental and physical health.I was recently discharged diagnosed with HF and related ssues and an EF of 20%.Meds and lifestyle changes have seen an improvement in symptoms and a more recent MRI showed EF up to 35%.Subsequent tests/scan have revealed Bicuspid Aortic Valve compounded by a leaking valve,quite a shock at 61 yrs old having no previous symptoms.Have a strong feeling am heading towards valve replacement surgery having been advised that 80 % end up having surgery and all go on to lead a normal healthy life. I know exactly how difficult it is to remain in a positive frame of mind as each day I have become wary of yet more " bad news " and revelations about my health.All I can say is keep your chin up and cncentrate on doing positive constructive things like eating well and excercising and try not to let negative thoughts creep in there.Its how I get thro each day and keep my mental and physical wellbeing in check. Im sure that the future is bright for you and I wish you all the best for your recovery .Feel free to respond or chat anytime you wish. x
Hi Liss,
I’m sorry to hear of your struggles coping with the emotional element following heart surgery and now pericarditis (which I’m hoping you have some treatment for by now and perhaps has improved?) I haven’t had surgery but have recurrent pericarditis and pericardial effusion since June 2021.?The current episode I’m suffering from has lasted 11 months so it’s now chronic. I’m on colchicine and ibuprofen. One issue is you cannot exercise or even undertake mild exertion with pericarditis, even if you felt up to it, it is apparently risky and also makes me feel so much worse for days. A constant struggle and like you I’ve had to cancel so many outings and every holiday I’ve thought I can go on ends up cancelled by me. And yes, I look ok to others too! I’ve been looking at books on CBT to help with the emotional side and decided to try to focus on what I can instead of can’t do. Simple things too - I’ve been learning to cook /bake new healthy recipes, bought a bird feeder and watch the birds, I’m learning Italian and am trying to draw/paint too (not very well but my attempts amuse me now) it takes my mind of it and allows focus elsewhere. If I do have somewhere I want or need to be I nap beforehand and plan plenty rest around it.
I know everyone’s situation is different but I hope you know you’re not alone in this. Wishing you all the best.
New very worried member
Mitral Valve Replacement op tomorrow. Do I need anything else?
Edwards Inspiris Resilia prosthetic aortic valve. Which hospitals do them?
