LVSD

[SLK-14]

Can anyone help...I keep reading the prognosis of LVSD is 5 years from diagnosis...I'm having a problem getting my head round this...it playing on my mind constantly..😒

[shopman]

Where have you been reading this - Dr Google - if so then there are too many inaccuracies. If you want to read articles that may help you then try the NHS site or the British Heart Foundation. Better still rig the BHF Heart Helpline and speak to one of the nurses about your fears.

[SLK-14 in reply to shopman]

Thank you....I didn't want to bother them with what might be a silly question...but I will follow your advice....😊

[shopman in reply to SLK-14]

No such thing as a silly question when it comes to Cardio issues particularly if you do not understand what is going on.

[RufusScamp in reply to SLK-14]

It's not a silly question. Worth asking for advice on the best way to proceed - lifestyle changes, diet, exercise etc. to give you the best possible outcome.

[SpiritoftheFloyd]

I was diagnosed with heart failure after a heart attack/cardiac arrest in December 2018. When the medics all gathered around my bed and and said I had heart failure, after they had left the first thing I did was google it- and the first answer was that 50% of people were dead within a year!!! I've actually seen the report for heart failure in 2018 which gives a breakdown of the cases, and the majority of people diagnosed were over 75/80 ( quite a few were over 85) and a very large number of those diagnosed already had more that one long term life threating condition - so that when you look at it from that perspective, it is quite likely that a large number of those patients will indeed die within a year, age alone would suggest that, frequently heart failure will not be the cause of death, in a lot of case heart failure was probably brought on by one of the existing conditions. So from that I thought that as I was 64 when I received my diagnosis of heart failure, and had no existing life threatening condition, there was a pretty good chance that I would still be here in 1 year. It's now 30 months, and I'm still here and feeling very well.

What I'm hoping to have explained is that a simple statistic is fairly random and meaningless until it is put into some kind of context, While the 1 year is not a false statement, it needs to be looked at within the overall details of the cohort being looked at.

There are a considerable number of people on this forum was have been diagnosed with heart failure a long time ago and are still enjoying life. The medication and any adjustments to life style make a massive difference to the survival statistics these days. We all look this stuff up when first diagnosed and ask how long have I got - I asked and the best answer I got was - "I've no idea, but if you make the changes to life style that are recommended, then there's no reason why you should be here for years, and when you do go, the chances are it would be your heart"

Have a chat with the BHF nurses who will I'm sure to be to reassure you.

[SLK-14 in reply to SpiritoftheFloyd]

Thank you so much....I appreciate all the advice I am getting from fellow sufferers...😊

[Prada47]

Hello,When I asked the Heart Failure Nurse my prognosis she just smiled and said There is every chance something else will get you long before Heart Failure will.

I am into my sixth year since diagnosis, I do as I am told with my Medication and never miss a beat in taking it. I more or less eat what I want and probably drink more Beer than I should, but hey I am almost 74 so not saving myself for anything special !!

I started on my heart journey in 1982 with a Heart Attack, 2015 Bypass surgery, 2017 Stents into a bypassed artery. EF has been 27% currently steady around 40 % so there is life after diagnosis.

I never consider a prognosis !! I am going to Live and Enjoy it until I Die.

I don't really think there is any other way to look at it.

Take Care and try not to worry

ps Entresto got rid of my Ectopic beats which on a bad day would be an ectopic every other beat !!

Vaccinated twice to stay safe

[Hidden]

I have had it for 15 years and I am still here. Being positive helps a lot. It takes time to get your head round it. Talk to someone about all your fears. It helps.

[SLK-14 in reply to Hidden]

I will...thank you😊

[PeterpPiper]

Be aware the medical profession have a habit of reviewing situations in 5 year ranges … ie. prognosis in 5 years etc. Be careful not to read that as meaning we have only got 5 years left I made that mistake when I started obsessing over online medical reports I didn’t really understand ::))The best of health to you

[SLK-14 in reply to PeterpPiper]

Yes.. did exactly that....thank you for your comment...thank you so much..😊

[pjw17]

Hello I posed same question to HF nurse last week... She said have you been on Web?? She then stated the reports are well out of date, she has been treating HF patients as long as 15 years, her time in post.

[SLK-14 in reply to pjw17]

Thank you....will be trying hard to be positive...😊

[pjw17 in reply to SLK-14]

Oops should have said SAME PATIENTS for 15 years!

[SLK-14]

It really makes sense when you put it in those term...thank you for giving me a little peace of mind 😊

[Prada47]

Hi Just looked up SLK I knew it was a sports car the translation from German is

Sporty Light and Short

Enjoy your Day

[SLK-14 in reply to Prada47]

Hi Prada47

Yes....spot on....I wish...lol...you too..😊

[Prada47 in reply to SLK-14]

That's privileged information !!! I will admit to Sporty I help Coach at a Running Club, A little Heavy mmmmm, Tall at 1.83 I fully admit to. lol you take care SLK

Vaccinated twice to Stay Safe

[SLK-14 in reply to Prada47]

Likewise Prada 47...take care...

[IrisCarter]

Hi,

Although you are broadly correct, actual research published in reputable medical journals are very careful about selecting the samples that they include. They have to be otherwise, as you say, generalisation is meaningless. Most published research also includes analysis looking at specific factors such as age, sex, length of diagnosis, commorbidities, medications etc. There is some really good stuff out there but you have to be selective. Journalists are also often lacking in an understanding of science so their reporting is sometimes poor too.

Because of my background I only look at recent, high quality reseach in peer reviewed journals and although figures can be frightening there is a role for being informed.

For me, knowing the statistics regarding heart failure, valve replacement and the inherited cardiac arrythmia that I have help put things into perspective so that I can make decisions about how to spend my time for example.

You are also right that no one can predict how long a particular person will live because there are so many factors so although you can get an idea of statistics, whether or not you will be in the percentage that survive x number of years is still unknown!

[IrisCarter]

True.

I really think that critical thinking and media awareness should be taught at school.

[stagename]

I too had read the same report and was preparing for not much time ahead! My heart failure nurse was really positive and encouraging , and after initial problems with the drugs , I was put on Entresto and felt a lot better. I also did the lifestyle changes, the online rehab and made an action plan. The nurse explained about balance between heart and kidneys, and I commented that if I didn’t pay attention crossing the road , because I was stressing about my heart, I could be run over! We laughed and it took the tension away, as I am very aware that anything can cause our exit when our time has come. Stay positive and enjoy life as best you can. All the very best to you.

[Heartinthehills]

Like others I first asked the same question to my Cardiac nurse and was given examples of patients many years down the line and still coping. I passed my 8th anniversary last week with no perceptible changes to my capabilities since fully recovered in year 2. By then and still now I was back to swimming twice a week and hillwalking holidays. Regular exercise and good diet helps and celebrate that you are a survivor not a victim. Now you are 'in the club' and talking about your situation you will find plenty of others with similar issues living a normal life.

[Hidden]

When I was first diagnosed with Hypertrophic Cardiomyopathy my consultant told me if I wanted to look up more information, only to use the BHF or NHS sites because. He said if I used Google or american sites I'd scare myself to death. I looked at one site, and according to their statistics, I'd be lucky to survive 2 years, with the possibility of all kinds of complications in the meantime. Next time I saw him, he said taking into account to all my test results, I had a 5.3% chance of dying within 5 years, which meant I had a 94.7% of still being here in 5 years. That was nearly 3 years ago, and I had an ICD implant 3 months ago. My chances are now better than before. I know people who have been given 6-12 months and lived for 10 years or more, so just take life as it comes and try not to worry.

[SLK-14 in reply to Hidden]

Thank you so much for your comment...sure helps to gain peace of mind...and well done to you