Help please

[Glyndebourne]

Hi. I'm fairly new to the group. I'm 60 years old. Female. Having been born with a heart murmour, I had no problems until I was diagnosed with severe aortic stenosis in November 2022. It was an awful shock to be told I had a faulty aortic valve (inherited from my mother) and that I would need OHS especially as i thought I was fairly assymptomatic. I was also a keen runner and due to my family history of heart problems, I was hoping that if I looked after myself I might be lucky. But since my diagnosis I have been advised to stop running, which has really affected my mental health. I'm definitely comfort eating and drinking far too much wine every night. I'm disgusted with myself, and extremely depressed by the weight gain, but can't seem to stop 😒 I know that I'm also struggling to come to terms with surgery even though no date yet. Only symptoms seem to be fatigue (it's a huge effort to get up and go to work) and a few light headed moments. Anyone else felt like this? I'm feeling so low, anxious and desperate 😕

[Glyndebourne]

Thank you so much for your advice. I'm sorry about your heart condition but it sounds like you have it under control. I'm not on any medication yet, and I suppose I'm also anxious as to how quickly my health might deteriorate. I'm going to try and cut down on the alcohol and try walking regularly. As you say, one step at a time. Thank you again for taking the time to respond to my message. Take care xxx

[Etzel]

When I had a heart attack 15 years ago I chose to look at the positive not the negative. When people used to say does it worry you I'd say no, I've been diagnosed, I'm being monitored, and when the time comes they will fix me, does it worry you that you might be in the same condition as me and don't know it?

All you are doing is taking a gap year or two, then life carries on albeit with a few extra pills!

For info I was also born with a murmur and am potentially a couple of months away from double valve surgery, during my last phone call only 2 days ago the nurse commented that apart from low heart efficiency I sound in good shape

[Glyndebourne in reply to Etzel]

Thank you so much for your reply. I so wish I could be more positive! I've always been a glass half empty sort of person. The diagnosis was such a shock and has taken time to process. I'm going to try and get a grip, get on with my life and accept that I will be fixed (hopefully) when the time comes for the op! Thanks again. All the best xxx

[Rosie1066]

I too was born with congenital heart disease and as a child I was not allowed do any sort of sport or strenuous activities and my life was quite boring. Aged eleven years old I was diagnosed with aortic stenosis but in those days there was no operation to replace aortic valves - it hadn’t been in invented although my consultant at Guy’s Hospital in London was a pioneer of open heart surgery and was contemplating using pigs valve. I waited fifty years until iI finally got a heart valve replacement. When I became a teenager I rebelled as I wanted to do everything every other teenager did, and I did. I went on to live a perfectly normal life, got married and have two beautiful daughters. Eventually the aortic stenosis caught up with me but by that time I had continued to lead a perfectly normal life - all against doctors orders. I had no worries about having open heart surgery and it has given me many more years of a normal lifestyle and hopefully will continue that way for many years to come. My thanks go to the pioneers of open heart surgery of which my consultant was one of.

[Glyndebourne in reply to Rosie1066]

Thank you Rosie. What an amazing story! You are an inspiration. Thank you for sharing. All the best🙂

[Rosie1066 in reply to Glyndebourne]

I’m sure you will be fine. Try not to worry! You very quickly recover after the operation although I can’t say it doesn’t hurt - it does, but every day it gets better and you soon move on and, hopefully get back to doing everything you loved doing in the past.

[Hidden]

Hello

I am sorry you are struggling so much after your diagnosis

Heart attacks Bypasses as well as valves ran through the male side of my family and been female when I had my first heart attack followed by two more and a triple Bypass I was shocked as I think most of us are when we get told we have something wrong with our hearts and I also thought it was just the males in the family and not the females but I got that wrong

But this is not the end it is the start to a new beginning they have found that you need a new valve and they are going to operate and you may have to adjust your life a little you may not once you have had the op but you will find a new way of how to be happy again

Could you ask what kind of exercise you could do maybe some yoga would be something you could get into , walking there is so much you could do that is gentler but still give you satisfaction

You know yourself you have turned to food and having a drink which there is no need to feel disgusted over this happens with so many people it can be depression and maybe seeing your Doctor having some Counselling will help you to get through this difficult time

Over eating and drinking is not good for the heart and I know you will know that but today can be a new day were you can do something about it

If you do not buy it in you cannot eat or drink it so that would be a good start and getting some healthy food and snacks in that passion you have for running you could put all that energy in to keeping as fit and well as you can

The worst bit about surgery is the waiting but when you do get a date it will get easier as you have something to focus on and remember they do these ops every day and you will be in safe hands and even though looking after yourself regretfully has not stopped you inheriting this heart condition keeping fit after your op by gentle exercise healthy eating will give you an advantage on having a good recovery

I would really talk with your Doctor see what support you can get you will get through this and everyone is here to try and help the best they can x

[Glyndebourne in reply to Hidden]

Thank you so much for your comments. They have been really helpful. Actually I have suffered from depression for years, but i dont feel they're working anymore and hoping to try an alternative. I have also looked into counselling and have my first appointment at the end of this month 🤞. I also do a weekly Pilates class but miss the endorphin high after a run! I am going to look into other forms of exercise and try and cut down on the comfort eating and alcohol! Thank you again 😊

[Hidden in reply to Glyndebourne]

Hello

I understand I have suffered with anxiety for as long as I can remember and then I do get depression but anxiety is the worst for me but you seem to have already put a lot of positive things in place so feel good about that as you can build on it

I remember after my Bypass surgery saying I did not feel like me anymore and members saying it can be about finding the new you now and that sounded really sensible to me

Good luck and I hope you keep us updated how you are getting on x

[Cat04]

I had aortic valve surgery 12 weeks ago by open heart surgery.

You may wish to join a small friendly Facebook group

UK Aortic and Heart Defects Pre Surgery and post surgery

We've all been or are in your situation or similar and the group gives so much help, support & advice. You'd be most welcome.

[Glyndebourne in reply to Cat04]

Thank you. In fact I have recently joined this group! I hope you are recovering well after your surgery. All the best x

[Wooodsie]

Hi Glyndebourne, I feel for you, I really do. I just wanted to say that the surgery will do you so good, you will be a new woman. Maybe you will be able to get back to running once you have a new valve (I have no idea), ask your consultant, maybe someone on here knows.

It is easy to drink too much and put on weight, I am guilty of that too. Don't beat yourself up too much. However, you need to be as fit as possible for your operation. Walk, walk, walk. Get a fit watch to keep an eye on your heart rate, doesn't need to be expensive. And relax, it will be ok soon.

[Rosie1066 in reply to Wooodsie]

yes, you should be able to lead a perfectly normal life after a heart valve replacement. I had mine in 2009 and do absolutely everything that I did before and more. You may get some AF afterwards but this is quite normal.

[Glyndebourne in reply to Wooodsie]

Hello and thank you for your comments. I can't wait to feel 'a new woman'! I'm pretty fed up with this one! After everyone's supportive comments I'm determined to be more positive. Just need to find my walking boots! Thank you again 😊

[Digger0]

I understand where you are coming from. I was diagnosed with a congenital hole in my heart at aged 69 in 2019 as I was getting breathless on hills. This is someone who was an active hill member of a mountain rescue team in the Peak District in Derbyshire! This really knocked my mental health as they said it might not be repairable. To cut a long story short, it was repaired in August 2022 at the excellent Liverpool Heart and Chest Hospital with 2 devices as my "hole" had strings across it and Im back to aged 68 in activity now! I was even contemplating purchasing an off road mobility scooter as i could only do 400m. Good luck

[Glyndebourne in reply to Digger0]

Oh wow, I'm glad that you were successfully treated and that life is good again! Thank you for replying to my message. I really appreciate it - everyone has been amazing. Take care of yourself!

[Glyndebourne]

Thank you so much for your comments. That's really helpful. I know I'm feeling sorry for myself and I'm determined to snap out of it! Thank you 😊

[WardijaWardija]

I read your post with interest. Im so sorry to hear the obvious distress you are experiencing. I, too, have a genetically inherited heart condition, which came as a huge shock to me too, and like you, and many others on here I'm sure.

We all react differently but please be reassured, how you are feeling right now, is absolutely normal.

You feel how you feel, your feelings are totally valid, so please don't be hard on yourself, you have enough going on.

I'm sure many of us have responded to life-altering news in a similar way to yourself (I know I did) and still do, from time to time . . It's human nature, especially in the early days.

We are just attempting to self-comfort ourselves (albeit with less than healthy options) and for a short while, it's OK.

Yes, the weight piles on, and alcohol can dull the senses, but it's temporary, and this is something you do have control over when the time is right for you.

Acceptance of our conditions/ situations is, in my humble opinion, is the biggest stumbling block.

I guess everyone is different and there are many factors involved, but sadly there is no time guide as to when it will start to arrive.

A major factor is ones own personality and character. I tend to err on your side as to how full, or empty . . we view our glass to be.

I'll be honest, I haven't had OHS, but I lived under the news for several months that I was to have a quadruple bypass *

So I can totally empathise with how you are feeling, its just awful . .

* I was eventually denied my surgery by the allocated surgeon himself as he said, his words, "you won't make it off my operating table" 😱.

Instead, he gave me multiple stents and a bucket-load of life-long medication, that was the best, and only option he could offer, but 4 years on, I'm relatively stable and still ticking over. Acceptance has started to come but there's still a way to go.

I'd suggest you get as much support as you can, whether it comes from, be it family, friends or professionals.

For varying reasons, I didn't get much support, but in retrospect, I really wish I had.

Don't feel afraid of discussing your fears with your surgeon and health providers.

A previous member suggested a specialist support group on Facebook, that sounds an excellent resource.

This current period of anxiety, will pass as you move through your surgery and beyond, thats another chapter.

You can do this . . .

I wish you all the very best and I'm sure you'll be in good, safe, and blessed hands.

Easter blessings 🙏🙏🙏

[Glyndebourne in reply to WardijaWardija]

Thank you so much for lovely, kind response to my post. It's so reassuring to know that how I'm feeling is quite 'normal'. I agree, acceptance is hard, as well as not knowing when I will need surgery. The constant fatigue is frustrating, but I'm really trying to be more positive.I'm so sorry that you had such an awful experience with your diagnosis, and to hear those words from your surgeon must have been devastating. I'm so glad that with the correct medication you are stable and I wish you all the best for the future. Thank you again x

[WardijaWardija in reply to Glyndebourne]

You are most welcome, anytime 🙏

[MummaSoap]

Hi Glyndebourne

Welcome to the forum and thank you for your honesty about how you’re feeling. You should feel proud of yourself for having the courage to acknowledge how you’re feeling and reach out here for support.

The difficulty with such a big change to your lifestyle especially when you’ve been so active is that even walking can help with your mental health. Each time your muscles contract they release hormones into your bloodstream that feed your brain and help with your mental health. Unfortunately, you’re now resorting to less healthy ways to seek out those feel good hormones but you’re not alone and many people have done the same, similar or worse. The biggest takeaway is that you’ve identified it and you have a want to do something about it.

I would recommend speaking to your GP to see what forms of exercise you are able to do and use it as an opportunity to find a new passion or learn a new skill. Maybe a yoga class or bowls?

Try to redirect your negative thoughts into creative ways to process how you’re feeling - painting or drawing, meditation or joining a choir might help?

You have been through a lot and it’s ok to feel disappointed or discouraged that your healthy lifestyle didn’t stop you from developing a heart condition and you don’t know for definite that you wouldn’t have developed something sooner had you have chosen a less healthy path either. Be kind to yourself, give yourself the grace to process what has happened and what is going to happen - it’s a lot! It’s also ok not to feel hopeful or to feel angry or frustrated and even scared. However you feel, it’s valid but how you deal with those feelings is what counts.

Whatever choices you make (and they’re yours to make, you still have control over them) we will be here to listen and support you.

Keep talking and let us know how you’re getting on.

Best wishes

Soap

[Glyndebourne in reply to MummaSoap]

Thank you so much for your lovely comments, and apologies for not replying sooner! I am definitely going to try and get an appointment with my GP, and actually re other activities, I do sing regularly in a choir which is wonderful therapy! I also used to be a professional singer, now I just teach singing, which keeps me very busy but which I am finding exhausting currently. I wish I had time to do other things, but I fear this is unlikely until I retire: knowing that I have to work until I'm 67 fills me with dread! I really hope I have more energy once I have a new value 🤞Thank you again for your wise words. Wishing you all the best x

[MummaSoap in reply to Glyndebourne]

No apology necessary, it’s all good! ☺️

Well that’s very exciting!! What sort of singing did you do professionally?

You’re very welcome and I hope that you’re feeling a bit brighter than you were!

Soap x

[Glyndebourne in reply to MummaSoap]

Thank you, and yes feeling a bit better about things. I trained as a classical singer and worked freelance until 8 years ago. I don't miss being a soloist at all - far too stressful! Much more enjoyable singing as part of a choir, and a great way to make new friends who are very supportive. I feel very lucky x

[Hobbledehoy]

Dear Glyndbourne, how scary for you. But others tell how you are going to be all right in the end. For now, you need to look after yourself, be kind to yourself, build yourself up. As well as being intelligent, you are courageous in the way you are facing up to your weakness. Ask your dr to help support your mental health. There may even be someone attached to the surgery to offer this. Mindfulness can be very helpful. Tai Chi is just lovely & can even be done seated. Walking & swimming are the best exercise, however undertaken. Every good wish and blessings, Glyndbourne. Many will be rooting for you!

[Glyndebourne in reply to Hobbledehoy]

Thank you so much for your kind words. I did contact my surgery in January re counselling and my first session starts at the end of the month. I'm also hoping to change my antidepressants as i feel that they're not working. Trying to be more positive and with so much support from this amazing group I'm sure I will get there! Thank you again and wishing you all the very best x

[Hobbledehoy]

It’s very hard to change our basic natures.

I learned little tricks to distract, soothe & nourish myself, like starting by drinking a glass of water before I get up, putting on the radio quietly for simple company (no tv yet!)), an exercise routine, nice clothes & food, books & a reading pattern, treats. Plus continual occupation, whether chores, shopping, a coffee out, meeting friends, interest/leisure groups/church. Doesn’t need to be undertaken at speed! Doing something for others, however little, but regularly helps too.

Good luck and God bless.

[Glyndebourne in reply to Hobbledehoy]

Thank you. That's very helpful. I'm so grateful 🙏 xxx