Hello, please have a think about joining UK Aortic and Heart Defects Pre and Post surgery Facebook group. Over 400 who are either wiating for surgery and needing reassurance and advice or like me have had surgery and can offer the help. We also have regular zoom chats. I know that there are several post surgery with young children tooJoanne
Apologies, I've just got my wrists slapped for not giving you more help.I wish I knew more about your condition but I don't. I had severe stenosis of my bicuspid aortic valve and needed OHS to replace it and the root and then a pacemaker.
Anxiety is my middle name and I also googled, easy to say don't but everyone does. Please reach out to your GP. Mine referred me for Clinical Psychologist appointments and I had them for over a year, 6 months pre and 6 months post surgery. She was invaluable
The irony, Still_Breathing , is that your questions answer themselves. The group that Joanne recommended, which I am also a member of, does not have members who make such inflammatory points as yours. They help each other, offer support, compassion and love. If we don't know the answer to a question we offer a virtual hug or similar and if we do know the answer we help as much as we are able. I have not seen a single post that I have considered unpleasant or not at least intending to be helpful. Unlike this group where your type of response is relatively common. Yes, probably 99% of people here react in exactly the same way as in the recommended group, but as with so many aspects of life, it is the 1% who ruin things for everyone else. That is why I and lots of others have moved away from this group and found better places to support and be supported.
good morning, I just thought I would get in touch because whilst I am a dad and have different heart problems - pulmonary and cardiac sarcoidosis, it does sound like we have a lot of the same feelings around anxiety and leaving our children.
I am under a clinical pyschologist and have found that helpful. In terms of doctor google try and not use doctor google because it does make things worse. That advice sounds like I have not done the same but I have used dr google before and do instantly regret it.
Like Rhinos67 I can only comment on AS/BAV/AVR and ablation for arrhythmias from personal experience, by OHS. I imagine from a patient perspective the OHS process will be similar for you and that you will have the usual recovery from that. Just that the surgeons are tinkering with a slightly different part of your heart!
I coped by preparing everything beforehand that I could, putting my affairs in order as they call it and I then knew that if the worse did happen I had prepped everything possible.
It is difficult to put trust into the surgeons' hands and every op has a risk factor of 1-2% but without surgery the alternative would otherwise have been a 100% certainty for me.
I understand about wanting to be there for your daughter. Years back, in another similar situation, as a lone parent of 6 month old twins with no family help, I asked my health visitor what would happen to them if I didn't survive. She had never been asked that before so found out all the info I required and what procedures I needed to follow. I found great comfort in knowing that I had put everything into place beforehand.
Wishing you all the best for a successful operation & a smooth recovery next month.
I’m sorry, I don’t have any specific help or reassurance to offer you but I just wanted to wish you well. My mum just had open heart surgery and she was (naturally) really frightened in the couple of weeks notice she had before the op. She was struggling to process the whole thing and reacting angrily to family members trying to reassure her. I came to this site for some reassurance and ideas for what to expect post op and “met” some lovely helpful people. I hope someone with the experience you’re seeking comes along but, in the meantime, I want to wish you the very best with your surgery and recovery.
PS. Mums op was a success and she’s recovering incredibly well.
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