What lies ahead?

[Carolx]

Good morning everyone

My cardiologist rang me yesterday.

MRI showed that my heart is working at reduced capacity and there’s scarring on my heart tissue.

It’s one of 2 things.....

Coronary heart disease or Cardiomyopathy, what my brother died from a year ago aged just 41.

He’s swaying towards Cardiomyopathy.

He wants me to have a CT scan and DNA testing (blood tests and saliva swab), as my brother had genetic DCM.

If it’s coronary heart disease, it’s likely one of my arteries is blocked and I’ll need a stent fitted 😳

If it’s cardiomyopathy I may need to have an icd fitted.

He wont know for sure until I have CT scan.

The palpitations I’m getting are coming from my ventricles.

I’m 52 and I have had these all my life and was led to believe it was SVT (questionable now).

Needs further investigation.

Told me he will try to get the scan done asap but everything is being delayed due to covid.

I’m not telling my family, as they will just panic and I don’t want to worry them.

We are all still grieving for my brother.

They don’t need to know until I know what the correct diagnosis is.

Thing is I feel absolutely fine, apart from the regular palpitations.

I’m on 300mg Diltiazem a day.

I’m really worried, as I really wasn’t expecting these results.

What can the CT scan show that the MRI didn’t?

The fact my brother died so suddenly and so young, has got me thinking it’s going to happen to me too.

Any advice or reassurance would be so good right now.

Thank you

Carol

[Barbarasnne40]

Hi Carol So sorry to hear your having problems and the sad news about your brother . Also the worry you are going through

Like you I am new to this forum . I had a cardiac ablation in 2004 for SVT which settled well for years with only the occasional spell of palpitations .

In November 2019 I began having really bad palpitations again and ended up having to go to A and E on two occasions in jan and feb 20 20 They checked me over and said they would write to advised my Go to arrange an echocardiogram and also arrange a cardiology review as m ecg showed left ventricular Hypertrophy

I had my echo in February and to my surprise it showed I had moderate heart failure . I was totally devastated of this finding as I had no other symptoms apart from palpitations .

I was started on bisoprolol to control the palpitations which settled them well, but they didn’t start me on anything else as they said it would be discussed at my cardiology appointment in April . However due to COVID it was cancelled and rescheduled for July and it was to be a telephone assessment anyway . I have been very anxious and worried as had nobody to really talk to to get some reassurance .

My telephone consultation went as well as it could under the circumstances . He advised my Gp to commence me on Ramipril which is another first line treatment for my heart failure

He said he would arrange a ct scan of my coronary arteries and calcium scoring , and a repeat echo as I was tachycardia during my first one in feb .

Due to COVID I didn’t receive any appointments till November 10 th and November 12th . I had a follow up appointment following these results which I insisted I attended the clinic so. Could discuss everything with the Consultsnt which the secretary did arrange for the 24 th November

I was told then that my ct scan did not show any problems with my coronary arteries . My calcium score was nil so basically no problems there.

As my maternal grandmother had heart failure and died at 47yrs and my uncle had a pacemaker and died at 58 he said we were possibly looking at hereditary dilated Cardiopathy but that I would need a detailed MRI Scan to look at the heart muscle , which I’m still waiting for. Like yourself I am so worried and find myself getting upset all the time .

As my consultant specialised in arrhythmia s which is what my G, P thought was the initial problem in January he said I would now need to be referred to a general Cardiologist . I am seeing her next week at my local hospital so perhaps I will get some answers . I will let you know the outcome .

It has been a long journey basically a year so I’m desperate to see where we go from her

Take care

Barbara .

[Carolx in reply to Barbarasnne40]

Good luck BarbaraHope it goes well for you x

[Barbarasnne40 in reply to Carolx]

Thank you . Hope it all goes well for you too x

[Hidden]

Hi Carol,

I have scarring from Cardiomyopathy too. A CT scan was ordered for me after my MRI because I have a family history of Coronary Heart Disease.

The CT scan is usually either a Calcium Score or an Angiogram. The Calcium score tells the cardiologist if you have a build up of plaque in your arteries typical of Coronary Heart Disease.

The angiogram lets them have a look at the heart function using a dye.

Here's a link to the BHF CT Scans info:

bhf.org.uk/informationsuppo...

It is really good that your condition has been found and that either a stent or icd can be fitted, it's much better to have these as preventative measures.

I'm sorry for the loss of your brother and wish you the best of luck for whichever outcome you have.

[Carolx in reply to Hidden]

Thank you so much.I really appreciate your reply and the link you sent x

[Shar28]

Hello Carol. Sorry to hear about your situation with regard to your heart and my condolences on the loss of your brother. It’s really tough to go through each of these things, never mind both together.

My husband has DCM, we think caused by his BP being too high for too long then a virus. He was diagnosed nearly 4 years ago having been admitted to hospital as an emergency and ending up staying in for a week. He had ECG, ultrasound, CT scan, angiogram then after a few months a MRI. After the MRI he was referred for surgery for a replacement Aortic Valve, which was stenosis (narrowed) and regurgitating (letting blood drop back through to the ventricle) and it was bicuspid (it only had 2 leaves instead of the usual 3). They hadn’t mentioned the valve issue before the MRI, so I don’t know how well the CT scan and Echo showed up the issue.

The BHF website has information about MRI and CT scans

bhf.org.uk/informationsuppo...

bhf.org.uk/informationsuppo...

I understand that MRI images aren’t affected by bones being in the way and CTs are better with coronary artery disease but there’s probably more to it than that. Someone else on here may have more of an explanation.

Have you discovered Cardiomyopathy UK? Their website is excellent with loads of information. Here’s the link

cardiomyopathy.org

Both the BHF and Cardiomyopathy UK have nurse-run helplines and both are wonderful. They explain, suggest questions to ask cardiologists, support, listen when you’re feeling down and are generally well worth speaking with about any heart related questions and queries.

I know your family will worry about you, but they may be worrying anyway if they feel that something just isn’t right with you. At least knowing would put things into perspective. Perhaps be armed with information sheets/booklets from BHF and Cardiomyopathy UK so you cam speak about it objectively when you’re ready. And I would recommend asking your GP for some counselling to help you deal with everything going on in your life just now. It’s not easy to say the least and talking about it can really help.

This forum’s a great place too, so feel free to use it as much or as little as you feel you want to. Rant, question, query, seek hope and solace, tell us how you are.

In the meantime, all the best to you and your loved ones.

[Carolx]

You made me well up! 😢Not with sadness.....with gratitude.

Thank you for your lovely reply.

Helpful and supportive.

I’ll check those sites out.

I feel in a daze today.

It’s probably just the shock of it all.

I’m normally very strong and resilient but the past year has really taken its toll.

I am peri menopausal too 😩 and have had a knee injury (torn meniscus) for the past 4 and half months.

So it’s kinda piled up and finally come to a head.

I work with special educational needs students in a college, they make me feel so grateful every day and I realise things could be so much worse.

Gotta keep smiling ay! X

[stillaboveground in reply to Carolx]

Hi so sorry for your loss and your on going problems. you seem so positive in your last post and you need to keep this attitude going. I feel if you tell your family you might just be surprised at their reaction, they could feel that helping you get through this could mean the death of your brother was not for nothing. I hope you soon get some treatment and begin to feel better. The people on this site are amazing, I know they helped me get through some tough times. We will always be here for you, even if only for a bit of tender loving care. Sending you love and hugs, Keep safe. Ruth

[Carolx]

Thank you for your reply Ruth.I really do appreciate all the wonderful people giving advice, love and support xx

[Page12]

Hi Carol. Sorry to hear about your situation with regard to your heart and on the loss of your brother. Let's look at the positive side to this as regarding. Your heart it's been picked up and being looked in to it and hopefully all will get sorted by right treatment and meds. Best of luck and please don't stress to much.

[Carolx in reply to Page12]

Good morning Thank you for your reply.

My initial reaction on Friday was ‘well this is it I’m going to die young like my brother’.

After reading the replies on here and the Cardiomyopathy Uk page on Facebook, I’m feeling more positive.

The cardiology team at St Thomas’ Hospital have been amazing.

I have only had dealings with them from early last year.

They have been very thorough and prompt with appointments etc.

I can email my cardiologist and he’ll reply within the hour.

Im just hoping the CT scan will be soon, so I can deal with whatever this is.

I’m 99% sure it’s DCM and he pretty much said the same.

Thank god it’s not another MRI! 😩

Can’t stand them, very claustrophobic!

I’m guessing the CT scan is more open and doesn’t take as long.......yes? 🤷‍♀️

Carol x

[Astronomyrules in reply to Carolx]

Hi Carol,

I too find MRI is almost unbearable and was dreading the CT scan, but its fine. Not a tube, but a doughnut; no feelings of claustraphobia; no noisy vibrations and all over very quickly. I'm sorry for your loss. You are coping with a such a lot, but as others have said your condition has been picked up, is being assessed and the NHS will take good care of you. I've survived much longer that either my mother or my maternal granfather, both of whom had the same genetic condition as me and I expect to go on for many years yet. Good luck.

[Carolx in reply to Astronomyrules]

Good morningThank you for reassuring me re the CT scan. I know I’ve got to have it done but this makes me feel better knowing it’s nothing like the MRI.

Appreciate your support and kind words x

[DaveTR]

Hi Carolx,Welcome to the forum.

I was diagnosed with Dilated Cardiomyopathy (DCM) in 2003 at the age of 33. 17 years on I'm still here! 3 years back I had an ICD implanted and it has saved my life multiple times with corrections and a few full blown shocks too. I'm hoping for a good few years more 🙂

My Dad died when he was in his 60's of DCM and it was thought mine was inherited. Recently they were able to identify a fault in both our DNA (Titin gene) which was the cause of the DCM. As a result of this my daughter and sister have been screened and thank goodness the fault does not appear in their DNA.

I'm very sorry to hear about your brothers death. Especially so young. Was he receiving treatment before he died or was this discovered after his death?

What ever your diagnosis I hope the treatment slows, stops or ideally reverses the heart failure.

Be strong, there is hope.

🙂

[Carolx in reply to DaveTR]

Good morning Dave Thank you for your reply.

My brother was diagnosed in April 2018 with DCM. He also had the TTN gene in his dna.

He was under Barts hospital and waiting for an icd to be fitted.

He was on medication.

Unfortunately it was too late for him.

He literally dropped down dead while fishing, the morning of 7th December 2019.

So as you can see it was a year and 8 months after being diagnosed.

I have 2 other brothers and a sister.

He did tell us all when he received his diagnosis and advised us to get tested.

It’s only myself that has taken his advice.

Now receiving the shocking news I’ve probably got it too.

So my children will need to be screened.

Your story is very promising and certainly gives me hope.

Thank you so much x

[DaveTR in reply to Carolx]

Speaking as a fellow fisherman your brother must have been a good man.

You sound a proactive sort of person so keep on keeping on.

🙂

[Violymay in reply to Carolx]

Hi Carol!Like you, heart problems seem prevalent in my father’s family. He died aged just 63 of a heart attack due to athero-schlerosis. My husband died aged 61, 5 days after a stroke but PM revealed he had survived an earlier heart attack. The thing is they were both ‘heavy’ smokers which I think must have contributed to their early deaths. I may be being naive but I’m hoping that as I’ve never smoked, I’ve got a better chance of coping with heart problems and possibly COVID if it gets to me!

[Carolx in reply to Violymay]

HelloI don’t smoke but I like a drink.

I could also do with losing weight.

Just been shopping and bought loads of healthy food (other half is looking for the chocolate and biscuits 😂) but he needs to lose weight too.

So it’s a good time to start!

I just need to get this CT scan out the way, then I can get my head around it.

Also decide whether to tell my family 😏

I tested positive for covid 2 days before Christmas.

Thankfully I was asymptotic.

I’m a key worker and now being tested every week at work 🤞🏻

Thank you for your reply x

[Sunnie2day]

Update, Carol, how are you holding up?

[Carolx in reply to Sunnie2day]

Hello Sunnie2day 😊I am feeling better thank you.

More positive than I was.

I feel ok in myself. I had two episodes of arrhythmia yesterday, no idea why.

Been taking my meds properly and it was my day off, so I was relaxed and chilling at home.

They didn’t last long, but now I know there’s definitely something wrong, I was a little more anxious than I normally am 🤷‍♀️🤦‍♀️

Of course they stopped after a while, like they always do and I was fine.

Thank you for taking the time to check on me.

How are you doing? x

[Sunnie2day in reply to Carolx]

Better every day (had a 'mild' pericarditis acute flare last month), thank-you for asking And great to hear you're finding a more positive frame of mind - not always easy to do.

Let us know when you get the date for your scan.