Internet info.

[Jaylark]

Hello. I've been trying to learn more about my partners dilated Cardiomyopathy by getting information from the Internet. All the information that I have read says that a person's life expectancy after diagnosis is 5 years so I feel very scared by this. Can anyone tell me if this is true, please?

[Ennasti]

My strongest advice is stop googling. Ask your doctor your questions and for information, not google.

Cardiomyopathy comes in many forms and unlike many cancers, there is no real way of accurately predicting life expectancy. There are so many factors that come in to play and your partner’s doctor is the one who is putting all of those pieces together.

I have cardiomyopathy. Mine is related to the sodium channels of the heart and my personally set target age is 90 and I feel confident I’ll get there.

There are many people on here and elsewhere who will also tell you they’ve been living with this condition for decades and are doing well.

[Jaylark in reply to Ennasti]

Thank you for your reply. I know that I shouldnt be looking at Google. My partner is not wanting to ask the question, so I don't feel that I can ask when I'm at the appointment with his cardiac nurse. I've taken comfort from your advice, though, about people on this site living with the condition for decades.

[Popepaul]

I saw a study which suggests that the 15 year survival rate is 34%, with a 5 year survival rate of 44%. Some studies suggest that the latter figure is somewhat higher.

[Jaylark in reply to Popepaul]

Thank you for your reply, PopePaul. My partner may be in the 34% category and if the latter figure could be higher that is reassuring. Best wishes.

[PadThaiNoodles]

Life expectancy is just the average. So if 3 people diagnosed at 90 all die the next year, then you need another person who lives for 17 years to balance it out.

What you really want to know is what the life expectancy is for someone your partner's age and with your partner's health profile. But that's a lot harder to find....

[Jaylark in reply to PadThaiNoodles]

Thank you for taking the time to reply. I guess the advice is that no one really knows for definate so to just live in the moment and enjoy life.

[Shar28]

Definitely not! The trouble with studies etc on google is that many are outdated (before current treatments were available) or has a patient base of, for example, men in the 70s and 80s, all from one particular country, or the patients were diagnosed/part of a trial at a late stage of their condition. They don’t therefore reflect real life, as it is now. It’s really important to look at all of the data about the study ie date it was reported, sample size, sample demographic etc

It’s best to stick to NHS, Nice, university websites, and the charities BHF and Cardiomyopathy UK.

My husband was diagnosed with Dilated Cardiomyopathy 6.5 years ago with an EF of 10-15%. When checked 2 years ago his EF was 67%. So, not only is he still here, but he’s very much better.

Best wishes to you and your partner.

[Jaylark]

Ah, thanks Shar28. I got such a shock after looking at the Internet this evening, but hearing about your husbands EF improvement is marvelous and you explaining about the studies has put my mind at rest. I'll be able to get some sleep tonight, so your advice is much appreciated. All the best 🌻

[mjames1]

In many cases you can live a normal lifespan with cardiomyopathy. Each case is different and remember, the life expectancy in an older population is always shorter regardless of the condition. Best source of this type of information is your Doctor Who knows your individual history.

Jim

[DaveTR]

Not for me.I was diagnosed in 2003 with Dilated Cardiomyopathy (aged 33) and 21 years on I'm still here.

Please use trusted and up to date resources 🙂

[Jaylark in reply to DaveTR]

Thank you for your reply DaveTR. That is so reassuring to hear. All the best.

[TheBesty]

Don't listen to that google shite.

5 Years if you went on unmedicated and are already 80+ years old. I'm not dying in under 5 years, who's got time to die in under 5 years?! I've got too much to do.

[Jaylark in reply to TheBesty]

Thank you Besty. I'm going to stay off Google sites and just enjoy the moment. As you say life is to short and there's so much to enyjoy. All the best 😊

[TheBesty in reply to Jaylark]

Just one other thing to consider too, some of the "wonder drug" medication that is out for cardiomyopathy have not even been prescribed to patients for 5 years yet either, so the data from all that does not exist yet. 👍😊

[Jaylark in reply to TheBesty]

Yeah, I wondered if the low life span included people who are on medication, living a healthy lifestyle etc. Probably not by the sounds of it. Hopefully when they have these statistics, in a few years, the figures on the Internet will be more reassuring for people.

[Silvasava]

Another one here with DCM, diagnosed in 2019, modern meds have vastly improved our prognosis. The internet is very outdated. Another excellent source of information and support is Pumping Marvelous, a resource for all with heart issues

[Jaylark in reply to Silvasava]

Thank you for your response, Silvasava. I've checked out Pumping Marvelous and I agree with you that it's an excellent source of information. Much more positive than some of the stuff you see on Google. Best wishes.

[Silvasava in reply to Jaylark]

Not only informative they are a great friendly group and very supportive xx

[Deejay62]

hi I’ve been living with dilated cardiomyopathy for 21 yrs as I know it. The BHF has information on the various cardiomyopathy’s also there’s a Facebook group.

Like all diseases no one can actually predict how long people have even end stage until the signs of death is there. There are stages that dilated cardiomyopathy goes into. In my case I have various arrhythmia, heart failure EF of anything lower than 50% mine is 23% and I also have pulmonary hypertension, which is pressure from the atria to the lungs, I think.

Cardiologist know a lot about DCM so write down your questions and the next time you see them ask all you need to ask and more, like I do and still do. Many people are living with this.

All the best

[Jaylark in reply to Deejay62]

Thank you for your response Deejay62 and your useful advice. I'm pleased to hear that you are okay. I'll follow your advice and write down a list of questions to ask, next time. I'm got a better understanding now about where misinformation comes from on the Internet, thanks to all the helpful replies that I've received from the people on this site, so I'm extremely grateful for the support. Best wishes.

[Nessa1972]

Hi, I have dilated cardiomyopathy too. I did the same and Googled it but apparently Google totally very out of date so I ignore that now. I was diagnosed in April and am currently on medication for my symptoms. I'm finding it all ok but there has been talk of a pacemaker (hopefully not). It is all very scary but if you both take it a day at a time then it's not too bad.

[Jaylark in reply to Nessa1972]

Thank you for your reply Nessa1972. I think lots of terms and info around heart conditions are dated. Heart failure, sounds very scary so I wish they could give it a different name. Best wishes.

[Alicant]

my notes say Heart Failure nothing else is that Cardiomyopathy?

[TheBesty in reply to Alicant]

Yeah i was diagnosed with acute cardiomyopathy, gp notes says heartfailure

[Alicant in reply to TheBesty]

Thanks for responding..

[fishonabike]

Please remember that all statistic like this need careful interpretation - as PadThaiNoodles points out they are averages or other statistical calculations which are often difficult to apply to individual people

Understanding statistics is not easy for most if us and medical statistics like mortality risk, survival rates etc are particularly confusing and scary to people who have no training in understanding them. They often use 5 or 10 year periods of measurement which untrained readers interpret as limits.

[Jaylark in reply to fishonabike]

Thank you very much for explaining that to me fishonabike. I'll use more reliable sites in future for information. Best wishes.

[fishonabike in reply to Jaylark]

Its not necessarily about the reliability of the info - you understanding and ability to interpret statistics are more important in understanding how the stats apply - this is not something most of us learn at school or in our day-to-day lives

[Jaylark in reply to fishonabike]

Hi, yes. I see, thank you. Probably best to ask the doctor or ring and speak to a cardiac nurse for simpler to understand information rather than relying on the stats alone.

[fishonabike in reply to Jaylark]

Cardiomyopathy UK have good patient oriented info as well as a phone helpline with qualified nurses on hand - Pumping Marvellous are also said to bee helpful

[Athomeinyorkshire]

You can get accurate information from CardiomyopathyUK, the charity that has helped me tremendously since my own diagnosis. They have nurses who you can talk to every weekday, info booklets, local support groups all round UK.

[Jaylark in reply to Athomeinyorkshire]

Thank you Athomeinyorkshire. I'll look them up. I do know that they have support groups that meet up every few months, up and down the country. Thank goodness there are these valuable charities that can be used as well as the NHS. Best wishes to you.

[authun]

I was first diganosed with dilated cardiomyopathy in 2002 and it was graded very severe. The medication and regular physical activity got it back to mild until in 2015 when I got a chest infection. I developed an arrhythmia which was sorted with a drug and I also had an ICD implanted, just in case. By 2016 I was taking a cycling holiday abroad, albeit on flat land! Two years ago after, I suspect, Covid, I started feeling weak again. I had developed a new and different irregular heart rhythm and found even walking short distances difficult. A change of drugs, and a new device to replace the ICD, to something called an CRT-D followed by regular short walks and weight loss and I can move around comfortably, go on holiday etc. I don't get out of breath.

I've lived with it nearly 23 years now. Helping yourself, diet, right food, exercise works. Just don't push things like running up a hill. Always stay comfortable but just do something to keep the body moving. In 2002, my cardiologist told me not to worry and that he has people who have been coming to his clinic for more than 20 years. That was the most reassuring thing I ever heard.

[SchnauzerOtto]

I went to the Cardiomyopathy UK National Conference a couple of weeks ago and the speakers, including the leading Cardiologists in the field, stressed the point that the prognosis with DCM has vastly improved. Severe cardiac events are well published but very rare! Have a look at Cardiomyopathy UK YouTube channel for the talks of Gerry Carr-White! Also a lot depends on the underlying cause, either genetic or not etc etc.

I found the local support group from Cardiomyopathy UK very useful as you can hear first hand from lots of people with different backgrounds and stories.

[Jaylark in reply to SchnauzerOtto]

I will check out the Youtube channel. Thank you for responding to my post and passing on such helpful, reassuring information. Best wishes.

[Smitty1956]

Hi, Jaylark,

Speaking only for myself, I find that learning that I have any serious health issue is scary and even overwhelming. However, like you, I also want to know “all” that I can about the condition.

I do ask my doctors lots of questions about what I want to know, but I have also found that some doctors simply have more knowledge of a specific condition, or disease, than other doctors. In addition, some doctors are just better at explaining complicated information to a patient than others. I have also found that some doctors “keep up” with reading the most current research available on a medical topic, while other doctors may not be as up-to-date. My point is that even our doctors vary in terms of (1) the quality and depth of information that they can give on a medical condition; (2) the ease of understandability of the information by the patient—I.e., how well the doctor can explain conditions, treatments and outcomes in layman’s terms; and (3) the most current and up-to-date information, including treatments and outcomes. Yet, I do still ask my doctors my questions so that I can gather data that I will use to build my understanding of my disease, or condition.

In the same way, the internet (Google as one search engine) helps me to gather additional information to use in building my understanding of my disease, or condition. However, I do need to be aware of my sources of data, and I need to be able to weigh the value in each source—-just the same as knowing that all doctors will not have the same level of knowledge of a medical condition nor the same expertise in clearly explaining what you need/want to know. In that same way, not everything that you find and read on the internet is accurate, up-to-date, nor easy-to-understand. Always look at the source of this information first to determine if this information may provide any data that you might use in order to build your knowledge of a topic, such as cardiomyopathy. For example, I just looked at the Cleveland Clinic website for some general information on cardiomyopathy. I learned that there are at least 10 different types of cardiomyopathy:

Types of cardiomyopathy include:

*Dilated cardiomyopathy.

*Hypertrophic cardiomyopathy.

*Ischemic cardiomyopathy.

*Arrhythmogenic right ventricular dysplasia (ARVD).

*Restrictive cardiomyopathy.

*Transthyretin amyloidosis cardiomyopathy (ATTR-CM).

*Broken heart syndrome (stress-induced or takotsubo cardiomyopathy).

*Chemotherapy-induced cardiomyopathy.

*Alcohol-induced cardiomyopathy.

*Left ventricular non-compaction (LVNC).

*Peripartum cardiomyopathy.

My point is—please don’t give up totally on gathering some new data from the internet (always check your sources)—and also always ask your doctor, specialist, or experienced nurse about your specific health concerns.

There is always much to learn about our health problems/issues, and no one source (doctor or internet) has all of the answers. Sample lots of data—try to learn about any new, promising treatments—make any lifestyle adjustments such as limiting alcohol, eating healthy, reducing stress, exercising more as possible, etc.—and possibly, the end result will be to live a long and fulfilling life.

❤️

[Jaylark in reply to Smitty1956]

Hello Smitty 1956. Thank you very much for taking the time to reply to me with all of this sound, useful information. I know what you mean about different doctors having different levels of understanding of heart conditions. My experience is that GPs have limited knowledge of heart conditions, which is a worry as my partner will be discharged from the specialist cardiac nurses next year, back to the care of his gp. Some of the replies that I have received have mentioned some reliable websites such as Pumping Marvelous and the Cardiomyopathy UK Web site so I will use them to gain more knowledge. I agree with you, though, to gain as much knowledge as possible using all resources available, so I won't be staying off the Internet all together. Thanks again. Take care and best wishes 🌻

[Smitty1956 in reply to Jaylark]

Good to know! Thanks and best wishes to you! ❤️

[Bobkins99]

Most Google searches take you to US 'health providers'. The main aim is to get you to seek further assistance from them at huge cost. By all means read many articles to gather info but I would have the questions lined up only for your actual cardiologist when you see them