Emotional Rollercoaster Ride.

[Butterfly65]

Hello,

Last Thursday I had my first appointment with cardiologist since being discharged from hospital 11th September last year, (admitted due to HF with Afib).

I'd had a cardio MRI at Papworth last October with an adenosine stress test so was eagerly awaiting results, was in scanner for 80 minutes but unfortunately & annoyingly,

because of afib causing my heart to race, skip & bounce around,

the usual gold standard MRI images were blurred. 😬

So after 4.5 months I still don't have a diagnosis which Is causing me immense stress & anxiety.

Cardio Doc said he needed to bring my heart rate down so increased HR med dose but it's still not in the 80's where he wants to see it.

Received a letter back in September telling me I was on waiting list for cardioversion so he said he'd chase that up.

Also said I'd need a Ct scan & angiogram.

He mentioned the possible diagnosis of noneschemic Cardiomyopathy &/or Coronary artery disease but until further tests nothing can be confirmed.

He said my cholesterol had shot up this month so wanted to prescribe statins but I asked to wait to see If further tests re arteries were positive or negative.

Last week after appointment I felt incredibly relieved when he said at this stage there was no reason to think about OHS for two leaky valves, also have left & right ventricle damage.

The good news he said,

was the MRI scan had been able to detect that my ejection fraction has gone from 23% to 34% - my tricuspid valve was no longer severely regurgitating, now only moderate regurge, the same as my mitral valve,

& that my enlarged heart had very slightly

decreased in size.

But as this week's gone by, I've felt a deep dip in the rollercoaster ride of emotions for my weak struggling heart & I'm still feeling exhausted all of the time.

It's difficult to be positive without a diagnosis, especially when we feel so tired.

[LadyZ13]

I'm so sorry to read this, that sounds like a heck of a lot to get your head around and the waiting is just awful - worse than the illness, sometimes!

I had a cardioversion privately at Papworth and the wait was a few short weeks rather than months. I appreciate it's a gamble when the process may not work, but if it does restore NSR and improve your symptoms, it might be something to consider? My flutter was after surgery and my consultant said afterwards that it was probably a factor in my heart not remodelling as hoped at the beginning - just another thing for it to deal with.

It's a long time to wait to be told what's going on with your heart, I can imagine this is stressful, which in turn isn't great for your heart either. Hope you get some follow-up soon.

[Butterfly65 in reply to LadyZ13]

Hello again,

hope you're well & thanks so much for your reply.

Unfortunately I don't have private health insurance & have no idea what a cardioversion would cost privately.

Thing is,

my cardio Doc doesn't think a cardioversion will work for me,

he said it might be successful but he doesn't seem to think it will keep me in NSR for very long.

He said he viewed it as more of a stepping stone procedure for many, especially for those of us who have heart damage, he said that even if it only lasted for a few days, I would at least get to know if it made a difference to my symptoms & then I'd be put on another waiting list for an ablation.

The waiting is absolute torture for me, as it is for most I would imagine,

I wish none of us had to wait as long as we have to.

[LadyZ13 in reply to Butterfly65]

I'm really sorry to hear that - and it's frustrating that they run the cardioversion to put you on the path to ablation - passed from waitlist to waitlist. The waiting is absolutely awful, especially if you don't feel right. I don't have anything else to suggest, but maybe others will. Thinking of you, and really hoping that the chasing up will pay off. I honestly do think that making a nusiance of yourself is sometimes the only way!

[Butterfly65 in reply to LadyZ13]

It is frustrating but we have to go along with it, & you never know, there might be a small chance the cardioversion will work & last longer than expected. I've never been one to make a nuisance of myself so you may have a point.

Although I did make a point of making Dr aware that I was struggling badly with anxiety caused by the delay in a diagnosis & that I had no energy.

Sorry I didn't reply to what you shared re your heart flutter, I hope it has been put to sleep permanently.

[Butterfly65 in reply to LadyZ13]

Just to add;

I'm not medically trained but seeing as Cardio Doc & his team were aware that I had Afib with an already very fast & irregular HR,

then I think having the adenosine stress test could have made the problem much worse.

My heart must have been beating ten to the dozen to negatively impact/ blur the MRI images so badly.

[Murderfan58]

I feel for you I know what it's like to want a diagnosis and until you get it it's like living in no mans land. With a diagnosis you can research it and understand it more .

Took me 34 years to get my neurological condition diagnosed and it's rare . But having it means I can talk to others with it and understand why my body does and did what it does. Plus my neurologist has never had a patient with it so everything I learnt I pass on to him .

Going to see cardiologist at clinic on Weds it's a referral that was requested in July. But I have lot of questions to ask after my week in hospital due to my heart. All I had was a headache and pain in the left side of my neck but didn't feel right . My daughter got me to A&E by 5am but my speech had gone as my HPX had kicked in . Can't fault my care within hour had CT scan on my brain ,bloods and ECG I was in Afib. Hours later another ECG which showed an anomaly so cardiac enzyme blood test done . Hours later it showed heart muscle damage and they implied it meant heart attack.

Long story short spent 4 days in acute cardiac ward at Aintree then transferred to Broad green had other tests and angioplasty but didn't need any stents . Came home Monday after a week away. Talk of having MRI on my heart had one in 2021 so will ask to have it that way they can compare them .

Will take my discharge letter with me and get them to explain it to me. As I don't understand what it means .

Having answers means you can cope with anything but not knowing it plays on your mind and ride a rollercoaster of emotions.

Butterfly I hope you can get your diagnosis and answers to all your questions. It trite to say try not to worry as I am a worrier. Have you got a good GP you could talk to and get you the answers you need?

[Butterfly65 in reply to Murderfan58]

Hello & thanks for your reply, hopefully I will get a full & proper diagnosis in near future.

Sorry to hear that you had to wait such a long time for yours though

I expect having a rare condition is going to be much more difficult to diagnose.

[Murderfan58 in reply to Butterfly65]

Could have got diagnosed years before if my old neurologist had had my whole genome genetically tested and he could have put me in Clonazepam which stopped my limb jerks and seizures. But better late than never . Fingers crossed 🤞 for you

[Butterfly65 in reply to Murderfan58]

Thank you.

[Mister1]

I'm sorry to hear what you are going through. I can understand your anxiety issues.

I have had heart issues at the end of May of last year and have waited 7 months thus far to see a EP Cardiologist as the hospital forgot to internally refer me to Cardiology department.

I have had to launch in internal investigation where it was concluded I suffer with Angina too but no one has never been disclosed this to myself and my EP Cardiologist denied I have Angina but then told me to loss 20kg in two months so I can have my Ablation..

I am now one month into lossing the weight and still have no appointments for to see the EP Cardiologist as he booked accidentally in to see him when he's on holiday.

I have also now lost my job due to long term sickness and delays from this.

It's is an agonising time with heart issues and unfortunately I don't feel from what I've been reading on here that the NHS and Cardiologist mentally supported you enough with your worries..

I wish you all well in your journies with your heart issues.

[Butterfly65 in reply to Mister1]

Thank you.

[iansHealth1]

I’m so sorry to read your story, it does sound like the waiting and not knowing is probably adding to your stress and making your condition worse. I’m just writing this to tell the forum my experience of my recent health travels.

I’ve recently had a cardiodiversion and more recently (two days ago) had a s-ICD fitted.

We’ve all got opinions on the NHS, but I have nothing but praise for the work they’ve done on me and although I was on a heart transplant waiting list that I didn’t know about, every major procedure I’ve had hasn’t involved waiting for longer than a couple of weeks.

With the costs involved, when I was wheeled into theatre for my ICD, there had to be ten people in that room and more equipment than you could shake a scalpel at.

I was in theatre for about 90 minutes, then in local recovery for a couple of hours and moved to a bed in the cardiac care ward for 24 hours for observations.

That op and post care must be - and this is a complete guess - between £50-100k. I’m sure private healthcare can do it cheaper, but I’m also sure that any cardio work will be in the tens of thousands of pounds.

Best of health whatever you decide.

[Butterfly65 in reply to iansHealth1]

Thanks for your reply,

I'm not aware of your health history but I would guess that if you're on a heart transplant list then your procedures would be classed as urgent, which makes sense that you've only had to wait two weeks for them.

Fortunately though,

most of us are not on the heart transplant list which means we have to wait much longer for our tests, scans & procedures,

which obviously does causes some of us stress & anxiety.

In an ideal world none of us should have to wait longer than necessary, some people on waiting lists do sadly die, or their conditions worsen because of the stress.

I wish you all the best.

[iansHealth1 in reply to Butterfly65]

I think you’re right on the urgency and that never occurred to me.

My heart is badly damaged and my ejection fraction has never really got above 18% and usually hangs around the 15% mark.