Bit new to this

[MOTUBunny]

I'm 41, and new I was ill as the summer didn't seem that warm to me, I was waking up in the night completely out of breath, getting a lot of chest pain and other issues

However, my GP insisted it was all in my head and refused to do any tests or make any referrals. According to him, there was nothing wrong with me apart from mild anxiety.

Then last month I collapsed and was admitted to hospital. It was found that my heart was twice as big as normal and my aortic valve three times as big. My resting heartbeat was 180. There was severe damage to my left ventricle and my aortic valve could burst at any moment, plus there was an irregular heartbeat.

So much for nothing wrong with me.

Anyway, they at first were talking about an operation but a range of surgeons from several hospitals said it was too dangerous to operate. If they opened me up, there was a 70 - 80% chance that I would die on the table.

They have told me to take pills, get home help, give up any hope of ever working again and do very, very little. No swimming anymore. No booze. No walking further than the end of my road.

My life expectancy is "might be 6 weeks, 6 months, 6 years, we just don't know".

I'm 41 and had no idea I had any heart problems. Apparently I will have been ill since my teens or early 20s at the latest, so I suppose I just got used to being ill.

Sometimes I'm just numb. Sometimes absolutely furious. Sometimes full of self-pity. Often just totally terrified.

Any advice? Please?

I'm sorry for "War and Peace" but I don't want people telling me it can all be sorted with a by-pass. It can't.

Thanks

[NorfolkGal]

Heart filled hugs are on their way. How very devastating this news must be. I hope you are surrounded by family who will care and comfort you and Please do follow your consultants instructions to the full. Hopefully you will be supported by cardiac nurses.

You will always find support on here and lots of lovely advice from some very knowledgeable people and we all care for each other.

[Nathan53]

Is it any wonder you are experiencing such a roller coaster of emotions after what you have uncovered about your health. This site is an amazing source of information and support but there are times when more intensive support is needed and can help. Would you be willing to seek out Counselling - it can't change what has happened but can be invaluable in helping you to process your thoughts and future approach to life and your health. bacp.co.uk has information on Counselling Support but relates to Counselling you have to pay for. Alternatively Counselling can be arranged on the NHS via your GP with an inevitable wait. How about also speaking to the BHF Specialist Nurses on this site. Additionally could there be any merit in seeking a second opinion which is your right within the NHS. I am not trying to make things seems better but there are times when another Specialist takes a different view. Wishing you all the best and thinking of you. Nate

[Hidden]

Do you feel able to seek a second opinion? You are very young - would a transplant be an option? Suggest you speak to one of the nurses on the BHF Helpline - they are wonderful. Take Care.

[Plum53]

So sorry you are going through all this worry and uncertainty at your age. The replies I have read on here to you make sense and hope will help you going forward .I just want to say there are people always ready to listen on here and although I can't add to what's already been said I do understand your mood swings. Sending you lots of love xx

[P0rtnahapp1e]

Hello MOTUBunny , one thing which helped me enormously when first diagnosed was to be told that anxiety and depression are side effects of heart problems and that you are likely to experience them. Somehow it made me feel a lot better to know that my emotions had a physical cause, rather than a mental one.

Not explaining it very well, but it certainly helped me to think positively.

[Calliope153]

Like you I went from "nothing wrong" to "the risks outweigh the benefits" so no operation(s) to correct the five things wrong with my heart. I went through a time of total disbelief intermingled with anxiety, fear and an inability to stop talking to anyone who would listen. I too was told it would be controlled with medications. At that time I also couldn;t walk more than 200 metres. Everyone thinks they understand what it is like looking at a limited life span and living with a) a time bomb in your chest and b) steady progression of heart disease. Imagination and empathy doesn't really enable you to really see the reality. Your first step is to get your daily life as easy and comfortable as possible. Do you live alone? Ask your GP practice nurse if she can give you advice on what practical support is available to you and/or your family or , as others have suggested, ring the BHF helpline. You also need to work out what benefits you may be entitled to if you are not going back to work: worrying about income is not helpful to your overall condition and peace of mind. It is different for everyone but taking control in a small way, in what now feels like a very uncertain world, may help you move forward. Hugs.

[Qualipop]

I would change GP Immediately and put in a complaint then I would ask for a second opinion, not on you diagnosis but on your options. Sympathy won't help you much I know but you do have it. Do you have a supportive partner? You really need someone to do the fighting for you.

[Mollykelly123]

Best wishes and good luck get a new gp

[gal4God]

I often get out of breath wen chilling in the evening normally by later evening. My cardiologist knows and says it’s to be expected at the mo but I Kno wats going on. It does feel like a battle tho. My m8 who also has a heart condition says it’s a fight.