Introducing myself & advice while waiting diagnosis

[Matt_Brighton]

Hello everyone.

I'm 35 years old, live in Brighton, generally healthy, with a job I love and Dad to a little boy and now a baby brother on the way. Very exciting times : )

However, as you'll probably guess, I am here as my heart is playing up and I'm looking for a bit of advice and even some people to talk to about it all.

I've had a few MRI's over the past couple of years as I've had strong arrhythmias, dizziness and breathlessness. On the MRI, my heart function was weak (50%) and both chambers were expanded so cardiomyopathy was suspected. However, I had a very successful operation (Cardiac Ablation) for the Arrhythmia and post-operation it was hoped that the heart expansion was caused by the arrhythmias, so we were hoping that the functionality of the heart would return to normal.

However, my last two MRIs have shown that there has been no improvement in the heart size and functionality, so the Cardiomyopathy conversation in being had again. We're now going to wait 12 months, without medication, before another MRI to see if it gets better, or worse before properly diagnosing.

So I find myself in a funny kind of limbo. I'm desperate to learn more about the possible condition or find the best way to get myself as healthy as possible to help my heart recover, if I indeed don't have the condition.

I'm really keen to hear from anyone else who feels they are at this stage where you're not fully diagnosed with a condition yet and are also feeling a bit confused and insecure about how you live your life for the next X months. Do you wrap yourself in cotton wool, or throw caution to the wind and continue life as normal while you wait for the diagnosis? I'm not looking for answers, but it would be interesting to discuss with anyone out there..!

My other question is regarding who you choose to talk to about this. Do you find it best to talk to friends and family, or do you think professional help is best? There are a lot of big questions which something like this brings up, which are difficult to talk about during a busy life, so I'd love to hear any advice!

Thanks, everyone - I look forward to hearing your stories and connecting with you!

Matt

[skid112 Heart Star]

Hi Matt,

Welcome to the forum, really sorry to hear of your condition. Can't help with it as mine was different, maybe some insights to the mental effect though as not on here will have suffered one way or another.

I found family and friends to be of little help initially, so much so I shied away from discussing it at all, that caused immense issues mentally. I sought profesonal help after about a year, its taken a long time to get back on an even keel.

So first suggestion, if you think your family can talk to you and you can talk to them, even about the worst possible result, then do it. If not speak to your gp, your cardiologist or your cardiac nurse, there may be a group in your area or they can point you in the right direction. As for questions, write them down, every time you see your cardiologist or your cardiac nurse ask, I you don't understand the answer, ask again.

The other thing you can do is talk here, others have had, or will be having similar experiences, here sharing is caring, helping others helping your self as well.

Good luck going forwards

Mark

[Matt_Brighton in reply to skid112]

Hi Mark,

Thanks for replying and sharing your experience. I think I'm going to try and speak to people professionally as much as possible at the start as you've suggested. I had a chat with a friend a couple of days ago who just came up with lots of questions, which I didn't know the answer to, so it was a real wake up call to seek out people who know what they are talking about, after all, they're the ones who are likely to be able to help me!

Thanks again and take care.

Matt

[Shar28]

My husband has dilated cardiomyopathy and we’ve found Cardiomyopathy UK really helpful, as well as BHF. In addition to his prescribed cocktail of medicines he takes Ubiquinol to help his heart which he feels makes a difference. He says he has more energy when he’s taking it. It’s all challenging to come to terms with, for you and your family, but try not to dwell on it all of the time. Shortly after diagnosis one doctor said that it’s important not to do too much, but just as important to do enough too. He’s found it really useful advice. Best wishes to you and your family.

[Matt_Brighton in reply to Shar28]

Thank you! I'll take that advice on board!

[Heartlady1]

Hi Matt ... welcome to the forum and sorry to hear of your undiagnosed issue. Yes the worst part is being in limbo... it feels like life stops and all the worry of " what ifs"

So just some thoughts that may be helpful to you at this time..... if the doctors want to wait a year without medication I would definitely take this as a good sign that they are not unduly worried. And hoping things will return to Normal.

Also 50% EF rate is very near normal ( did they explain that a normal heart rate is 55%) this is really important for you to know as when they talk about % we automatically think standard heart function must be at 100% and so our number can panic us if we think this. ( hope that helps)

All that said yes you worry when anything is flagged up as a potential issue with your heart and of course you want to look after yourself.

I would suggest focus on a healthy diet ( I eat a lot of fish and chicken and salad and vegetables. Avoid salt ( and a lot of processed/ pre packed food has salt ) so fresh is best... and tastier!!

I was also told by a cardiologist that natural honey has been proven to protect your heart and can sometimes improve it! This is not honey from a supermarket but from a new keeper. If you Google Bee keepers in your area... you will be surprised how many there are. And then ask if they sell their honey.. I pay £3.50 per jar.. and just spread it on toast in the morning.

Doing exercise is healthy for you and your heart so please don't stop doing exercise. Going for walks 3 plus times a week is good for you. Although maybe not running marathons 🙄.

I Have severe heart failure and am currently aiming to get to 10000 steps a day ( big ask when working etc) currently on 4000 a day... but it's about doing regular exercise which will help your heart.

Discussing woriies/ concerns... I found that family and friends although sympathetic did not understand and I felt I was burdening them at first. What I found brilliant was talking to the BHF nurses ( you can find their number on the website) they are brilliant at listening to concerns ( imagined and real ones) they have the time to help and talk through... they 're assured me on a number of occasions ... and advised me when I should be contacting professionals ( when I was not sure)

This in turn helped me to talk to family and friends... as I was talking to them from a position of knowledge with what the BHF nurses had said..... and this in turn helped my family and they were then able to support me..as it helped them be aware of what was happening.

I do understand that this is a worrying time and each heart issue is different but just to let you know I was diagnosed with cardiomyopathy atvthe age of 32 with an EF of 41% and I had a 1 year old son.... and I am typing this at the age of 56 and still going strong.. . And my son is a strapping 24 year old 😁 give your lovely son a hug and hope all goes well for you and your family xxx

[Matt_Brighton in reply to Heartlady1]

Hello Heart Lady!

Wow, thank you so much for taking the time to write this reply. I've read it while eating my breakfast this morning, and it's given me a real spring in my step! It's surprisingly reassuring to hear other's stories but still hear about you living a positive and exciting life. Kudos to you!

Thanks for putting my EF figures into perspective. I'm going to work really hard to give myself a healthy diet, exercise regularly and also try to cut alcohol out completely. That will be the major challenge, but I read your post about cutting it out and your EF improving and was really inspired! Let's see how I get on! One question - do you drink coffee and have you had any professional advice about that?

Good luck with your treatments and operations and thanks again for taking the time to reply to me!

M

[jimmyq in reply to Matt_Brighton]

BHF nurses: BHF Heart Helpline on 0300 330 3311

[Heartlady1 in reply to Matt_Brighton]

Hi Matt

You are most welcome. This is what this forum is all about. We have all been in your shoes and we do understand what you are going through .... and its fab to be able to help others which is a great feeling for us too. 😁.

're drinking coffee... I very rarely now have a coffee... and if I do it's a milky weak coffee. Saying that, for years following my original diagnosis i did still partake of the coffee. But as my heart got worse 2 years ago my GP suggested caffeine is not great for the heart so to cut down if I could. Interestingly he said decaff is worse for the heart!! As the chemicals they put in are more damaging for the heart. ( just as I was thinking this was my go to option)

He said that tea is better than coffees as he said coffee has no goodness whatsoever ( he doesn't sit on that fence my GP) 😂😂

So now i have 2 or 3 cups of tea a day and drink lots of squash and water. That said i am sure you will be fine drinking tea and coffee if you like it... just make sure you also drink plenty of water too to keep your hydration levels good.

're the alcohol well dome you for stopping... lots of debate 're alcohol on this site and some people do like a drink and continue to enjoy it. As in life everything in.moderation... however I would say if you can cut it out it is a good thing for your heart as alcohol speeds the heart up and with cardiomyopathy this pushes the heart to work harder and can cause more damage. So no alcohol is the best... but a little alcohol is then next best 😀

're giving up alcohol I did initially find it difficult so I put in place alternatives so I didn't feel deprived ( it's all psychological... but hey whatever works)

Instead of that beer after work I would have an orange and lemonade ( it's the fizziness that made it similar)

Instead of a wine with my meal at home I now drink schloer.. in a wine glass... and it's lovely too.

When out with friends I drink lime and soda.. in a wine glass.

I have even found a mint and lime drink that tastes exactly like mohitos!! Delicious.

It has very soon become the norm

And I no longer EVER get a hangover whoo hoo ... so get to do more than before. And knowing that it's healthier for me and my heart... what's not to like. 😀

All the very best and if you have any other questions always feel free to ask myself and us fellow hearties always happy to help if we can.

Karen

[laura_dropstitch Heart Star]

Hi Matt. Not much to add to what the others have said in reply to you, but just wanted to say hi. I was diagnosed with heart failure aged 31, with an ejection fraction in the mid to high 30s. That was nearly seven years ago and I'm still doing well (I have an active life and am mum to a very demanding, but fun, six-year-old) despite my heart function not really improving in that time. I take lots of medication and have a type of pacemaker/defibrillator fitted, but otherwise lead a pretty normal life. It's scary to find out that things are not right with your heart, but it's also a perfect motivation to live as healthily as you can - eat right and exercise moderately. There's not much else you can do while you wait for a diagnosis, but (as Heartlady said) they wouldn't be leaving you to your own devices for a year if they were too concerned about you and your heart function is not far below what's considered normal. As for talking, I preferred talking to a professional in the early days (I'm very lucky to have a specialist psychologist in the heart failure clinic I attend for checkups) because a lot of the time I was terrified and/or angry and I much preferred offloading that on someone who was paid to listen and wouldn't lose too much sleep over me! Nowadays I am able to talk more openly to my friends and family (though I save the dark days for only the favoured few...lucky them!) and I have fantastic chats with people on this site. I also have healthy conversations with myself, probably 24/7. Honestly. I do think about my heart all the time, to be honest, but no longer in a purely negative way. I think talking to the psychologist helped me to be able to do that. Ultimately, talk to whoever you find helpful, but get answers from people who really know their stuff. Googling anything health related will scare you, mostly unnecessarily, and most people don't understand the workings of the heart as well as they think they do. Ask your doctors or phone the BHF helpline if you have concrete questions that require answers.

Good luck with everything and keep us all posted with any further developments