Looking for more info...

[K-Bs]

Hi all,

I'm new to the community. Feel free to read my lengthy bio.

I've been researching BHF, Mayo Clinic, Royal Brompton websites .. you name it.

However, I'm not sure if it's down to bad timing (with the dreaded Coronavirus) but my symptoms have progressed steadily and more often which can leave me feeling dreadful, but since seeing a consultant back in February this year, I've had several letters explaining the findings on ECG'S, Echoes, Blood tests, CMRI scans.

Roughly around 4 conditions.. myocarditis, fibrosis of the heart, lv systolic function with global hypokinesia, 40% ejection fraction along with phenotype DCM.

My problem is, I've been given NO information from anyone.

I had a chat with a heart failure clinic nurse 2 weeks ago, she was nice enough but said it's not an easy fix and it's going to be a long wait until we find out a cause and or a formal diagnosis/prognosis.

Looking at info online is sometimes contradictory, "DCM is not reversible you'll be on medication for life" to "after medication treatment you may be given a device that is implanted to regulate electrical activity".

Heart failure for a very active (most of the time I've been told too active), person is hard info to take, which I originally was in denial about has now made me worry about my future and how long I have to remain not knowing.

Any help appreciated xx

[Shar28]

Hi, I think it’s a confusing time when first diagnosed. There’s so much information on Dr Google and a lot of it is absolute tosh which can be safely ignored.

Have you discovered Cardiomyopathy UK? Their website and nurse helpline are wonderful. Here’s the link

cardiomyopathy.org

Helpline is 0800 018 1024 weekdays 8:30 to 4:30.

Also, the BHF website is useful and the nurses are brilliant. Here’s the link

bhf.org.uk

Helpline is 0300 330 3322, weekday office hours.

You could also try speaking with your consultant via their secretary or your GP asking for an explanation in plain english.

All the best.

[GracieOS]

Hi, I can't answer your medical questions but I do know what it is like to be diagnosed with heart failure when I thought of myself as a fit healthy 55 year old. I regularly walked 10 to 15km over irregular countryside, cycled and practiced yoga. That was 18 months ago and I've come a long way since. I was completely devastated, EF low to mid 30s which meant my heart failure was considered severe. I still do not know to this day and after many tests what caused it. My MRI showed a small heart attack some years ago that I'd been completely unaware of but that was unlikely to be the cause. I thought at the time that I was going to die and not see my son graduate University or get to fulfil my retirement plans with my husband. I did seek psychological counselling and that did help me come to better terms with what was happening. 18 months on I'm in a far better place, medication and a few pretty minor lifestyle changes and my EF is up to around 50, only just below the normal range. My diagnosis made me reevaluate life, what was important what wasn't and I made changes accordingly. I reduced my working hours and plan to retire in 2021, earlier than originally planned. I still walk, cycle and practice yoga. Last year I spent 3 weeks travelling around europe in our campervan with my husband and we had planned a two month sabbatical this year to do the same (that probably wont happen now). I still get tired easily but have learned to pace myself. I can now see a long a fruitful life ahead. It's a tough diagnosis, especially if you're an active person, but it's not the end that I originally feared. Wishing you all the best with your test results and ongoing journey.

[Prada47]

Hi

You don't mention your Age it is a major factor in H F

H F is progressive but it can and is a very slow process in the vast majority of cases. I wouldn't get hung up on the reason why as it's something you may never know, and it won't help you in the future !!

Your Heart Nurse is correct in saying Medication is a line of Defence along with Lifestyle changes should you need them. Your medication will be titrated up yo the Maximum you can Tolerate and will be related to your symptoms. Finally an ICD or a CRT Pacer can be installed which will regulate your Heart Rate. Final solution in extreme cases is a Transplant, but from what I can gather that is an age related option as well !!

Try the web site Pumping Marvellous for a lot of information from actual people with heart failure.

Stay Alert Stay Well

What Meds are you on now ??

[K-Bs in reply to Prada47]

Hiya,

Thanks for responding.

I n my bio I put a lot more info about myself but gather nobody gets to read them lol.

I'm 39, due to be 40 Saturday.

I'm extremely fit (dancer since I was 7, webt on to perform professionally for around 10yrs, choreographing and teaching for 26yrs in total and a gym goer for over 6 years and ran plenty of half marathons and my first marathon at Brighton in 2018) which is why this is a bit of a mystery to me and my family.

We've gone through the whole medical history (no heart problems on my dad's side and we don't know my mum's as she was adopted).

I'm now only taking Ramipril but was on Bisoprolol for only 3 weeks as my heart rate drops low anyway, this was deemed unsafe for me. I was dropping to 32bpm before taking meds and now drop to 34-32bpm when I'm having a bad day.

I have my 7 day Holter monitor on now, this arrived by post today from the Royal Brompton hospital.

[Prada47 in reply to K-Bs]

Hello

Sounds as though they have you under control, the Holter is a great tool it's monitoring your Heart Day and Night it will identify any pauses and any Tachycardia or Bradycardia Fast and Slow Heart beats.

So happy 40th you have a good future to look forward to.

Stay Alert and Stay Safe

[GracieOS in reply to K-Bs]

I too have a very low heart rate and that has put a limit on how much bisoprolol I can take. Mine was regularly down at 40 and went as low as 36 at night. The monitor you are now wearing showed mostly my low rate was due to ectopic beats. Take care.

[K-Bs]

Thanks peeps.... xxx

Spoken to docs and cardiologist secretary this week... unique condition apparently! But still more to test ....

Have a great weekend all