How can I cope

Hi, I'm 17. My Mother has advanced heart failure and has had it for the last few years. When I google the disease it says that it's often the case that patients with AHF die within 5 years, I'm scared in case my mum suddenly goes, i want her to last as long as possible to see me grow up. I sometimes argue with her and I wish I didn't, I always feel terrible because i love her incredibly. Any advice on how to cope?

[MichaelJH Heart Star]

I have posted negatively on Dr Google and FaceAche previously on this forum. What you need to do is to make an appointment with your GP to discuss things, including your fears. The other things to bear in mind is that treatments improve year on year and nobody can accurately predict life expectancy. Stay positive.

[Hidden in reply to MichaelJH]

Thank you

[laura_dropstitch Heart Star]

Please don't believe what you read on Google, especially when it comes to heart failure. There are so many factors that affect prognosis. For example, life quality and life expectancy in the USA tends to be a lot worse than in Europe, and that's where much of the data you will read originates from. Also, as Michael said above, treatments are being developed all the time so much of what you'll find on Google is out of date. I was diagnosed with heart failure over six years ago and my treatments have changed and improved even in that time and I feel really positive and hopeful about what the future holds for all of us heart failure patients, especially here in the UK.

How is your mum when it comes to talking about these things? If it wouldn't upset her too much, maybe it would be a good idea to tell her how you're feeling and ask her for more information. The thing about heart failure is that there is an element of the unknown about how it will progress - some people stay stable for years and years and years (decades!) before they begin to decline, others not so long, but there doesn't seem to be any reliable way to predict this. So it could well be that your mum (and her doctor) wouldn't have any hard and fast information to give you anyway. But it's definitely better to speak to someone who knows about the condition rather than let Google terrify you. Plus it's a lot for you to process on your own at the age of 17, would be better if you had someone to talk to about it.

Yes, please do be nice to your mum, but don't be too hard on yourself when you're not. You'd be a very strange sort of 17-year-old if you didn't argue with her and it's obvious from your post that you really do care about her. Hope you get some answers (and reassurance) soon. All the best

[Hidden in reply to laura_dropstitch]

I'm going to have a chat with my Mum tonight. Thank you so much for your response, it means a lot. I will stay positive! All the best to you too

[Eyeballs]

It must be horrible for you and your Mother at the moment. I imagine your Mother is also very worried. For herself, but mainly about you. As difficult as is must be you need to support each other. Sometimes the wave of desperation distracts you from saying ‘I love you Mum’. Or giving her a hug. That parent/child relationship that exists at times needs to flip so the support you provide allows your Mother to feel loved and appreciated. Try and spend time to talk about how you both feel. Take each day as an opportunity to build a stronger relationship. On good days laugh and joke. On bad days be there for each other.

[Hidden in reply to Eyeballs]

Thank you. I'll try my best to do so.

[Lezzers]

Hi, does your mum have a heart failure nurse you could talk to? He/she will be able to discuss any fears you have. Please ignore Google's 5 years prediction, that does not take into account your mums current health, medication, treatment etc. My husband also has HF & I read that 5 year life span as also it scared the life out of me, that was 5 years ago & he's still very well. I also understand how you feel about arguing, I feel the same when I argue with my husband but if you went through life trying to be perfect you will implode! I'm always banging on about a Facebook group called pumping marvellous. This is a closed group for people with HF, their carers & their families. It is a great site for support advice & just sometimes just to talk. It's helped me considerably & there are loads of young people on it who have been affected by this condition in one or another. Finally don't beat yourself up over this, the very fact you have come to this group shows how caring you are & your mum will know that xx

[Hidden in reply to Lezzers]

Thank you, I'll try to speak to my Mum's nurse asap. I'll have a look at that group thank you so much and I hope the best for your Husband and you! x

[Lezzers in reply to Hidden]

Hi pumping marvellous also havea website that will give you a lot of information & I really cant recommend them highly enough, I hope you get the help & support you need. Your mum is very lucky to have such a caring daughter but remember you are still young & you should also be having fun & enjoying life, which I'm sure your mum will also want xx

[Prada47]

Hello,

Dr Google doesn't know You or your Mother. Currently Dr Google has about 10 billion patients who range in age from around mid teens to very old foggies so just think about how vast the range of patients and conditions Dr Google has, so you can see it would be impossible to predict people outcomes ! Your GP will only have a few hundred and will certainly know your mum a lot better than Dr Google, so as others have said please talk over your concerns to your Doctor.

Growing up is not an easy stage to go through, but you are showing a maturity beyond your teenage years support is available all you need do is ask.

Best Wishes

Frank W

[Hidden in reply to Prada47]

Thank You!

[mariancolyer]

Hi,

I have three kids and I have heart failure - only diagnosed last year. I too "googled" heart failure and saw 5 years as predicted life span. However, nearly a year after diagnosis, I am on lots of meds including Entresto and feel fantastic. I am still working and living as much as I can.

My daughter, in her early twenties, heard all my diagnoses from each specialist last year and they seemed to get worse and worse. She did find it hard to cope initially but please do not despair and also do not believe everything you read on the internet! Why don't you make an appointment with your GP and tell him/her your fears. They are completely normal fears so do not think you are wasting time. Your health is as important as your mother's.

[Hidden in reply to mariancolyer]

I will talk to my mum about talking to her Heart Failure nurse. Thank you for your response i appreciate it a lot. My mum had to stop working which was a shame because she loved her job. I hope for the best for you and your family!

[Howardl]

Hi

When I was first diagnosed with heart failure, 3.5 years ago, I googled prognosis and it came up with 6 years. The heart failure nurse said it’s more fingers crossed, I don’t know which is worse, he said as long as the tablets work you should be fine. As time goes by I look at life expectancy as a curtain being drawn on the future. I know I probably haven’t got as long as most people but I still don’t know how long. I have ten years until I retire but I wouldn’t join a pension scheme, it’s looking too far ahead. You must talk with your mother and ask how she sees the future, it probably won’t be the as you. When I think of the time I spent getting used to the condition, I could have got a university degree. You know time is precious, so use it wisely. This is easier to say than do.

Good luck

[Hidden in reply to Howardl]

Thank you All the best

[gal4God]

I believe that it can be reversed if she lives a healthy lifestyle

[Hidden in reply to gal4God]

My Mother has always been active and a healthy eater, her advanced heart failure was caused by cardiomyopathy.

[gal4God in reply to Hidden]

I’m 31 and have cardiomyopathy but I’m active and eat 60% of the time healthy foods which isn’t good enough so Ive started checking food labels and cutting out junk food which I love.

[sandrann]

Sending you hugs xx

[Hidden in reply to sandrann]

Thank you xx

[Sonnysmummy2016]

Hunni don't Google. Use bhf and trustedsites. Xx

[Hidden]

I agree with the rest of the replies don`t taking any notice of Google or any other search engine. I have had heart failure for 7 years now and according to Google with my condition (you can read my post refractory angina if you like) I should have died years ago. My advice is keep life simple let your mum do what she can when she can because there are going to be good days when you can encourage her and quite frankly days when she feels bloody awful, just be there for her on those days.

In my experience you`ll be hard pressed to get a life expectancy prognosis from any competent GP or Cardiologist as they simply don`t know (its not like cancer where they can see the rate of tumor growth)

If you wish to know more about heart failure in terms that non medics can understand have a look at Khan Academy - Heart Failure on Youtube it will help with your understanding of Cardiac conditions.

Try to stay positive and be realistic about your mum`s condition.

All the best.