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Gregors profile image
Gregors

Hello everyone. I'm a 52 year old woman and have just been told I have dilated cardiomyopathy. After a shock (my gentle Labrador was attacked, luckily she's fine) I ended up having pains in the chest and couldn't breath properly. Long story short, I ended up being admitted as an emergency and after a blood test I was told I'd had a heart attack. After an angiogram I was then told my arteries were clear and it wasn't a heart attack after all. I was relieved at first but after almost 3 weeks in hospital (the NHS is wonderful) I was told I had a very slow pulse and also cardiomyopathy. I left the hospital with a pacemaker fitted and I'm now waiting to see a genetic specialist! I'm shell shocked at the moment and also worried for my children if it is genetic. I also feel nervous about the pacemaker. I've not got any questions just now but I'm happy to have found this forum.

21 Replies
skid112 profile image
skid112Heart Star

Hi gregors and welcome to the forum

Sorry to hear of your diagnosis but glad it's been found. We have a few members wuth pacemakers, I'm sure one of them will be along to provide their experiences

Take care

Mark

Hi Gregors you’ve come to the right place. Very supportive. I had a pacemaker fitted in April, I’m 49,I felt a bit shell shocked at the time too! I had been diagnosed with 2nd degree heartblock. I had no energy but had got used to living with it my family noticed more, they thought I was a bit depressed as I wasn’t doing my usual things. I reckon it was at least two or three years, it was diagnosed just by chance! I feel very very grateful. I too praise the nhs they were wonderful with me. Give yourself time to get your head round this, it’s not “just a pacemaker” I spoke to people and that’s the reaction I got but it’s a complete change in your life, I’m getting used to it now. Take care jenny

Gregors profile image
Gregors in reply to Weejenny

Hi Jenny, thank you for taking the time to reply. I've had the same response from some people, as if it's not a big deal and so I'm trying not to show that I'm feeling very low about it all because I know I'm lucky that it's been diagnosed and I'm getting treatment. Like you, I've been feeling so tired and struggling to do normal things like run up the stairs but because I have another condition, myasthenia gravis, which is an autoimmune condition, I've been putting it down to that. I think because I know that I may need a different pacemaker fitted in the future and that I've got heart failure just makes it all seem a bit daunting at the moment. So thank you for the advice to give myself time to get used to it. Best wishes, Bev

Hi and welcome. What a time you've been having, but how amazing that the NHS can respond so quickly and start treating your condition. Honestly, it's great that it's been diagnosed and is being treated properly, though I appreciate (if you're anything like me!) that you might not see it that way right now.

I was really anxious when I was referred for genetic testing too, but that has ended up being a reassuring experience. They gave my parents and sister a precautionary ECG (which all came back normal, so no further tests for them) and my young daughter got an echocardiogram. That showed that everything was normal, but they'll repeat the echo every five years throughout her childhood, which is amazing for my peace of mind.

It depends on your symptoms, but I was told there wasn't anything I could have that they could currently do a genetic blood test for. They took a blood sample to keep, though, so that they could do tests if/when they became available. Last year my sample was tested for something and I got a letter to inform me that they had carried out the test and that I did not have the genes for that condition. So, again, great peace of mind to know tests are being carried out as soon as they're available and they're keeping me informed.

Obviously we all hope your condition is not genetic and your children will be absolutely fine, but if it is genetic, then it's an amazing opportunity to diagnose super early and start treating them even before symptoms appear, which is great news in the long-term. That won't stop you worrying now, of course, but hopefully you can see genetic testing as a positive result of a negative situation.

Good luck with everything and much love x

PS Should have said, I have heart failure. I also have a pacemaker fitted (CRT-D) so might be able to answer questions if/when they do occur to you :)

Hi Laura, I replied to your message but for some reason the reply didn't get posted below your message and instead is a bit further down. I just thought I'd say as I didn't want you to think I had not bothered after you took the time to be so kind. Bev x

Hi there hopefully I can reassure you although I am new to this amazing forum and wish I'd discovered it ages ago! I was diagnosed 16 years ago at 50 with dilated cardiomyopathy and am still going strong although I've had a few hurdles to cross since! My GPs initially diagnosed me with asthma but I knew it was a heart problem and went privately to a cardiologist who diagnosed me with severe heart failure with an EF of 25 and dilated cardiomyopathy! I was kept in hospital for 6 days where I was monitored and put on a regime of medication which has been changed from time to time. It was a very very scary time and I did feel utterly exhausted due to a poorly functioning heart and the medication but my heart function improved greatly over time and I was able to go back to being a P1classroom assistant which I loved. Unfortunately I live in Northern Ireland and our NHS service is not the best and over the years the follow ups were further and further apart and I wasn't getting my yearly echocardiograms and never saw the same cardiologist and they all seemed to be 10 years old and I felt I knew more about the heart than they did! So unfortunately my heart did deteriorate again and six years ago I developed severe ectopic beats and had an ablation which did the trick for a few years and then I was diagnosed with atrial fibrillation 18 months ago which was unrelated to my cardiomyopathy and apparently age related and put on a NOAC but once again the ectopics returned and I had another ablation last October (2016) followed by an ICD implant in March this year. But I am still going strong I'm now 66 and have just returned from visiting my gorgeous 15 month old grandson in Bristol. I'm realising that maybe my medical history might not be so reassuring to you but need you to know that dilated cardiomyopathy is a condition that can be managed as long as you get your REGULAR checkups to keep an eye on what your heart is up to. The fact I have AF, needed ablations and now have an ICD is part of my hearts peculiarities and the dilated cardiomyopathy which by the way on my last echo was showing a normal EF 55 and only slightly dilated left ventricle is a condition that you adjust to and does not mean you have to stop being you and doing whatever you want! We both have these mini computers implanted in us as backup and reassurance and at times if you give it too much thought can be very daunting and scary as can the cardiomyopathy. But hopefully like me you have good family support, I have the most amazing hubby who has been there for me through the darkest days. My two daughters both had echocardiograms a few years after my cardiomyopathy was diagnosed and both were normal. I have asked for and my cardiologist agreed to put their names down fo genetic testing only recently a year ago, but have heard nothing since, but living in Northern Ireland I'm sure it'll be a while before we hear anything! I'm sorry this seems to be a bit of an essay I've written but I hope there is some reassurance that life goes on and you deal with the cardiomyopathy and your pacemaker to make your life as normal for you and your family as you can and always go back to your doctors if you have any concerns no matter how small. All the very best to you.

Gregors profile image
Gregors in reply to Lizob

Hello. Thank you for your reply. I too was diagnosed with asthma but like you I just knew I didn't have asthma but never thought it was my heart. Listening to you makes me appreciate even more how lucky I am to live where I am. My local hospital is the Freeman hospital in Newcastle and if you don't know it, it is a leading hospital for heart transplants. They said my EF was 35 but couldn't put me on a very high dose of beta blockers because of the slow heart rate. They said I had ectopic beats too (I'm still confused as they said that was linked to the bradycardia) which got worse over the time I was in hospital. The pacemaker was put in to solve this and so I could have the medication upped to help with the heart failure. I worry that I feel a bit tight chested and I'm coughing a lot so I'll be glad to have that checked out.

I think I feel quite anxious because both my parents died quite young, my dad at 56 with a heart attack and my mam at 52 with cancer so to have this diagnosis has just made me scared that I will not be here for my boys. Knowing you have the same condition and you are still going strongly, enjoying your lovely grandson is a real comfort.

Thanks again for your message. It was so kind of you to share your experiences.

Take care, Bev

Lizob profile image
Lizob in reply to Gregors

Hi Bev I'm so glad you didn't think my reply too lengthy and has maybe helped in some small way. I don't know if you realise that a side effect of some beta blockers and ace inhibitors are a persistent cough and some even cause heart irregularities which is extraordinary as they are supposed to calm and help the heart! I've had my beta blockers changed and dosages altered over the past 15 years and am also on an ace inhibitor and spironolactone (loop diuretic). The beta blockers were changed or dosages altered to try and deal with varying degrees of tiredness although tiredness doesn't cover the feeling I was getting of being drained of all energy as if a plug had been pulled and all my strength had gone! Also they were trying to treat my ectopics and arythmias too. And as I had my thyroid totally removed 8 years ago I also have to balance my thyroid replacement medication as that effects the heart rate as well. Oh dear I'm beginning to sound like a complete physical wreck and I must admit on occasions I have hit some very low times where I'm wondering what's going to happen to me next but although I'm a born pessimist I take one at a time when another medical condition lands at my feet. And like you when I was first diagnosed 15 years ago all I could think about was I wouldn't see my girls grown up and married and would never experience what it was like to hold a grandchild and would be leaving my lovely hubby to grow old on his own! Well here I am 15 years on and my girls are happily married and completely independent of us and we have our gorgeous little grandson to shower with grandparently love! You are in the very early days of trying to come to terms with being diagnosed with heart disease and its a lot to deal with and it's only human nature to worry and be anxious about the future but you are so lucky to have such a good hospital and medical back up to help you deal with your condition. If you can just take one day at a time, just little steps and the time will come when you realise you haven't thought about your cardiomyopathy or that little metal box inside you all day and that's when you'll get your life back, maybe a little different but it's still you and you'll be there for your boys who before you know it will be gown up men! I honestly don't know where the years have gone it's but a blink of an eye since my girls were little! All the best Liz.

Gregors profile image
Gregors in reply to Lizob

Hi Liz. Thanks for that info about the medication and coughing. I didn't know that. I've just got back from my first pacemaker check and I'm relieved to say it is still in the correct place and is working how it should. I've also seen the genetics specialist who has given me letters for my siblings and my sons for them to get echocardiograms. She was really lovely and gave me lots of information about dilated cardiomyopathy.

Take care Bev x

Lizob profile image
Lizob in reply to Gregors

That's great your pacemaker is behaving itself I've had my ICD for six months and was relieved at the first six week checkup that it was working fine and for the first couple of months I was so worried I'd do something to yank the wires out of place! I'm lucky to have an ICD that has its own monitor that's a smallish box with another attachment and it plugs into the electric socket next to my bed and during the night when I'm asleep it checks over my ICD to see if there's been any ectivity and they will call me if there's a problem and there's a button on it I can press if I think I've had an event! My machine will not only give me a shock if my heart goes haywire it also acts as a pacemaker and can tweak my heart into a proper rhythm, it's really quite mind blowing to think these little metal boxes are capable of doing all this and keeping us safe. I had absolutely no support prior to getting it and very little after but there is a group of people with ICDs that meet twice a year and I managed to get to their summer get together and was told by a very jolly lady to look on it as my friend and not the alien in my body that I was feeling in those early days! It was good advice. I do hope you have a group you can join in your area with other people with pacemakers although you seem to have excellent support from the doctors, I'm amazed you've already seen a geneticist they really are on the ball and im sure your family will all have normal echocardiograms. I was told there was no known cause for my cardiomyopathy it was just the one of those 'things'! I'm curious if you have been told why you developed it? All the best, Liz

Gregors profile image
Gregors in reply to Lizob

Hello again Liz. Because my Dad's side of the family have all had heart problems then there is a high chance that mine is related to genes. The genetics nurse was fantastic and said that if my sisters or boys have any opposition to getting the echocardiogram then I should ring her and she will talk to their doctors. I think I am very lucky with my GP surgery so my son who still lives at home won't have a problem. I'm obviously hoping it isn't genetics but at least they will be in the system if it is.

The hospital also run a support group that get speakers in to talk about pacemakers and other topics so I'm going to join that. If I ever get any good advice I'll post it on here.

Take care Bev x

Lizob profile image
Lizob in reply to Gregors

Hi Bev, it's really uncanny but this morning I got a letter to go for an appointment with the cardiac geneticist on 13th November! Even though it's taken six months since I asked my electrophysiologist/cardiologist to put my name forward to see someone! I had been under another cardiologist in a different area of NI for years and he'd said it wasn't necessary because my cardiomyopathy was non-ischaemic! Dr Lau has now become my cardiologist but I was originally sent to him by my old cardiologist for my ablations and recently my ICD. I'm so glad my heart care is now totally with the excellent Dr Lau in Belfasts Royal Victoria hospital with whom I hope I will have regular checkups unlike the original one whom I would rarely see at checkup appointments which were becoming further and further apart! That is so good that you have a hospital run pacemaker support group I'm sure you will find them a great help. Unfortunately Northern Ireland has no such hospital based ICD support, only one run and funded by patients themselves that only really meets once a year where they have a speaker or two and then they have a Christmas party. The one meeting I went to did help just to be able to talk to other ICDers about my worries. I had been so desperate to talk to someone before the operation but was not given any information except to be sent out an ICD booklet and the one person I eventually spoke to " the ICD nurse" was very matter of fact and didn't help reassure me about the impending operation! It was a very lonely and desperate few months I spent trawling the internet where I had to filter out the positive from the negative reviews. Here's hoping all our children are free of the gene but as you say they will be in the system. I'll let you know how I get on at the geneticist, hopefully he/she will be as helpful and friendly as yours is. Sorry that was another lengthy reply I do tend to ramble and on a bit but it's actually quite therapeutic being able to "put pen to paper"! All the best Liz.

Gregors profile image
Gregors in reply to Lizob

Hi Liz, please stop apologising for the length of your messages, it's really lovely that this forum is here and it's interesting to read your experiences so I don't find them 'rambling' at all 😊

I think I wasn't very clear, the group isn't just for pacemakers, it's for people with dilated cardiomyopathy so the speakers have a wide range of subjects that they cover. I'm now doubting myself as to whether it's a patient led group or hospital led. I know the genetic nurses said she tries to get to them but they are on a Saturday so doesn't always manage. Whoever leads them, I'm sure they will be good meetings to go to.

That's good that you have the appointment through. At my appointment she said that my blood sample would be kept on file and with my consent, any new tests would be carried out on it and they would let me know, especially if there was something significant in the results. Also, if my boys or any of my sisters showed any signs of cardiomyopathy from the echocardiogram then my blood would be automatically tested for a faulty gene. Apparently it's so expensive to do this that they only test the blood if another member of the family have signs of the condition.

I'm sure they have said, but go along armed with as much information about family members as you can; DoB, dates of deaths, whether they had any heart conditions or any other illnesses, e.g. High blood pressure or high cholesterol as mine did a family tree and added all of that information.

Sure we will speak soon, Bev x

Lizob profile image
Lizob in reply to Gregors

Thanks that's really interesting that they only look for the faulty gene if a family member shows signs of cardiomyopathy! I had just assumed it would automatically be tested as my sister had genetic testing for bowel and ovarian cancer as she had both and thankfully survived, but I'm supposing she had the test as both my mother, father and uncle died at relatively young ages from bowel and breast cancers. Thankfully after three years of testing for several different genes my sisters tests were normal which significantly reduces the risk of these cancers being hereditary although this obviously doesnt mean I'm not at risk like any other person would be. But that's a whole other story and the most important thing for us and all those with cardiomyopathy is to make sure our children and close family members are screened regularly by echocardiograms. And yes I will definitely go armed with a full family history of all things medical. That will be my task over the coming week to go through my mountains of paperwork I've kept on my medical conditions which has mention of various family members illnesses too. By the way that's so good your meetings are also for people with cardiomyopathy. I joined Cardiomyopathy uk it's a very good source of knowledge and has a lot of information and personal experiences that so many times I've read something and said yes that person knows exactly how I feel! You get a regular news magazine sent to you and can read lots on line. The website is cardiomyopathy.org and as it is run as a charity organisation and rather than pay a subscription you give a yearly donation. I think it's really worthwhile joining and they have news and articles on the latest treatments and medication and I'd recommend you have a look online. Bye for now Liz.

Hidden profile image
Hidden in reply to Lizob

Hi Lizob,

Your journey is very similer to my own. I'm about to have a CRT-D put in. Is this something you have considered?

Ogilvie

Thank you so much for your lovely reply Laura. I'm so glad I joined this forum. My dad died when he was only 56 of heart desease but that was over 30 years ago so the research is so much better now. You are so right that if it is genetic then at least we know now and they can be in the system.

I just can't help feel anxious with every pain I get at the moment and as it's only been 4 weeks since getting the pacemaker fitted, I haven't had it checked yet so I keep worrying that I could still dislodge the wire. I'm getting it checked tomorrow so hopefully that will put my mind at ease.

Thanks again for your lovely message

Love Bev x

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Gregors

I was so paranoid about displacing wires at first too. Haven't managed to dislodge one yet! Sure your check-up will reassure you :)

Hi, all was good at the check up and the pacemaker is working how it should so that was a relief.

skid112 profile image
skid112Heart Star in reply to Gregors

Good to hear that

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Gregors

Great news. Hope that sets your mind at rest a bit. X

Welcome to the group from another newbie. I had a pacemaker fitted seven years ago. I can’t say I noticed an immediate improvement, but I don’t pass out these days. I still find it itchy at times but a that’s small price to pay. I hope that the Genetic Specialist is a help.

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