Newbie

[Lunadog21]

Hi. Today I have been diagnosed with severe heart failure. As a health 61 this has come as a shock. It appears my high blood pressure and a recent viral infection are the probable cause. I have been referred to the Heart nurses who will decide on medication. I am trying to be positive, but I am also a full time carer for my husband who has Huntingtons disease. This has been tough, but will get tougher. My question is, what help is there for me - now that I have a long term condition but also a carer. Thank you

[Hidden]

Hello & Welcome

I am still learning myself about everything but others with so much more knowledge will give you some good advice as they see your post

I was 57 when I had my first heart attack just before I was 58 , went on to have 2 more and then a Triple heart Bypass and yes the shock I still think some days I am still in shock

The words you have a heart condition feel like everything has come to an end but it hasn't and the positive is you have a diagnosis now and they will work their magic which they do

I am surprised the heart nurses are deciding what medications you will take

I am thinking you are in the UK and usually it is the Consultants who decide the best medications and treatments

It must be a worry been a carer and how you will cope now you have health issues yourself but with the right treatment you can continue to live a normal life if you feel well enough in yourself

Finding out what help there is , I would think asking your Doctor who maybe could do a referral to Social Services

Phoning Social Services yourself and asking for advice

Local Citizens Advice maybe

These would be all the people I would be asking and if they do not have the answers they usually have suggestions who you can contact that will

Hopefully some members on here might have found themselves in a similar situation and be able to help but make some calls starting with your Doctors and see what they can do

Let us know how you get on x

[Lunadog21 in reply to Hidden]

Thank you so much for this. Gosh you have been through such a lot. I hope things are good with you at the moment. I am in the UK and was introduced to the nurses who will be dealing with me. I believe they will liaise with my GP. I just want to feel well again so I can care for my husband. Today I start my journey, and it is wonderful that there are people out there who are there to help and support x

[Hidden in reply to Lunadog21]

Hello

We all go through our own journeys on here but whatever they may be they feel a lot to each of us

You did see a Cardiologist first to get the diagnosis ?

If so as most do I think it might work different in different areas we live as our Consultants say what meds to put us on and our Nurses support us

Yes your journey has just started and you will be ok now you have found us you will soon see how well people carry on with their lives and for most once they have got sorted out say they have not felt as fit in years !!!

You have got this , you will get through this x

[Lunadog21 in reply to Hidden]

Hi, thank you for this. You sound so positive! I was sent to see the cardiologist as I have low heart rate , palpations and breathlessness. I also had a 24 heart monitor. I had a blood test taken just before new year, to check BNP. It was extremely high, hence the echo sound today. The cardiologist was lovely. He said " we will get you sorted " he introduced me to the heart nurses. I have an appointment with them next week to discuss what happens next. I look forward to feeling fit and well again! X

[Hidden in reply to Lunadog21]

O well he will talk with them I bet first and discuss what you should be on and they will take over your care

You will get your life back x

[Heyjude31 in reply to Hidden]

Hi BeKind28, I hope you have had a good day. I was interested to see your comment about the impact of shock. I had my heart attack on 21 August 2021, followed by a 4 x bypass. Some days I wonder if I am still in shock about what happened, it is so life changing. I try and stay positive and truly believe I have been given a second chance. My main struggle is with the continued chronic nausea from the side effects of the medications. My Cardio Surgeon stopped my meds completely for 5 days and changed 2 of them. I have gradually restarted and find now that the statin and the tablet I take in the morning to line my stomach are also causing awful nausea. Hopefully I can sort some that do not cause nausea! Judi 😊😊

[Hidden in reply to Heyjude31]

Hello Judi

I know I am still in shock and have not processed it yet

I think I already might have said I suffered with severe anxiety before all this and now my anxiety even though I thought it could have never been worse is

I know like you this is a second chance but because of all this worry I feel so guilty every day because I am not taking this second chance but just sat worrying and reliving it over and over again till most of the time I end up in tears

You say you take your statin in a Morning , I take mine at night

Not sure what dose you are on I started on 80mg but that really made me ill so now on 40mg

I wonder if taking some meds like the statin at night would be better or the dose if the Doctors agree lowered , of course you would have to talk with them about this

I have always had a sensitive stomach and medications well just the odd one that you sometimes have to take before having heart issues would upset me

Now a cocktail of them well I am not sure what is happening

I did a post about one med as I have not had the nausea but I have a dreadful upset stomach and I mean dreadful

I am trying to eliminate things because I fear please do not let anything else be wrong and this one med they changed with me I am wondering if it is that causing it

Luckily it is one that my Doctor is happy for me to stop taking , on day 2 and stomach still upset

I think if it is really having an impact on you in making you feel nausea and getting in the way then I would ask for a review with your Doctor about your meds

The only thing I get muddled with is yes we need the meds and have to take them I accept that but when you are on such a cocktail of them how to you narrow down which one or more is causing it but I suppose that is the Doctors job to work it out x

[Heather1957 in reply to Hidden]

Just a quickie, I was under the impression that statins should be taken at night, I’ve never questioned this and had no problem.

[Hidden in reply to Heather1957]

I do take mine at night

I suppose all Consultants and Doctors might work differently sometimes x

[Heather1957 in reply to Heather1957]

I found this on the NHS web site so worth checking with the GP re the time you take the statins:

For some types of statin it does not matter what time of day you take it, as long as you stick to the same time.

Some types of statin should be taken in the evening.

Check with your doctor whether there's a particular time of day you should take your statin.

[Heyjude31 in reply to Hidden]

Hi BeKind28, I am so sorry about your acute anxiety, I can’t imagine how you manage that along with everything else. I have anxiety which I think is triggered by the nausea, and I start imagining all sorts of aches and pains, where I wonder if it is something serious. I can also relate to the fear, of ‘not something else’ it’s really difficult to manage all of these things together. I will speak with the doctor to review two of my meds and see what they say.

I think I am still going through the shock of it all, like you I try to be grateful for a second chance, but some days I feel very low and wonder why?

I try to exercise when I can and that helps so I shall continue with that. I also enjoy a really good book, which is a distraction.

Thank you again for replying, I really appreciate it, you a very kind. I hope you sleep okay, and take care, Judi xx

[Hidden in reply to Heyjude31]

Hello

I think that it is normal after such a life changing event and also I think after something like this it is normal that some of us can over think everything but hopefully as it is still early days this will get better

Yes talk with the Doctor sometimes it can take a few changes if they can be made till we find the right combination

I am glad you are getting some exercise and finding a good book a distraction

Let me know how you get on x

[Heyjude31]

Hi Lunadog21, BeKind28 has given you a lot of great advice, ☺️🤗I have not tried myself yet, but I understand there is a Cardiac Nurse helpline for the British Heart Foundation , if you Google that it should provide you with some contact details. Let us know how you get n and take care, Judi

[Lunadog21 in reply to Heyjude31]

Thank you so much. I feel better all ready x

[Jaws66]

Good start coming here !Whenever you have an appointment, go prepared with questions, and ask any others that occur to you whilst you are there. In my experience, both doctors and nurses have been great when I have queries, and taken the time to answer them fully.

Tell them how you are feeling, not just about your condition.

Avoid Dr Google, for all the usual reasons.

Ask questions here.

Personally, I've had good experiences of all the people in the system - but the system isn't always great. I've had to push occasionally to get information when test results have been delivered but not passed on, and it always takes at least two weeks for an email to go from the hospital to my GP.

Good luck!

[Lunadog21 in reply to Jaws66]

Thank you for your advise! Much appreciated! X

[Darkshades]

It might be a good idea for you to join the FB group Pumping Marvellous Heart Failure group … so helpful, informative and very friendly and knowledgeable. I know there are carers on there too 👍

[Lunadog21 in reply to Darkshades]

Thank you, I will! 👍