Hcm

[Mg27]

Hi all, I'm new to this, so iv just been told iv hypertrophic cardiomyopathy, but feel like my doctor's have not been helpful at all they haven't explained my condition to me, iv been for a echo scan and I'll be getting a heart monitor on November, i just wish they would sit and explain what's going on, and feel like they have been taken there time as I took ill on April, shortness of breath and dizziness ect.

[Shar28]

Hello, welcome to the forum. It’s quite a shock when you get a diagnosis like this and takes a bit of getting used to. My husband has a similar condition, Dilated Cardiomyopathy. We’ve found the charity Cardiomyopathy UK really helpful. If you haven’t already discovered them here’s the link to their website

cardiomyopathy.org

They have a nurse-run helpline and can send you a really good information pack by post, which is free.

BHF do a booklet, shown at the bottom of the page on this link

bhf.org.uk/informationsuppo...

Hope this helps. All the best for the future.

[siouxbee19]

Hello & welcome! I have HCM & would be happy to "chat" with you about it. I will be back online later today (it's currently 3:32am) but in the meantime feel free to email me here if you want to. Look forward to hearing from you!

[Mg27 in reply to siouxbee19]

Yes please I would love to chat with you and find out more about this HCM, how long have you been living with it and does it get better after medication

[siouxbee19 in reply to Mg27]

I guess I was born with it, I am 56 now. I had a definitive genetic test, so mine is hereditary. I've had symptoms my whole life, but never blamed on my heart (*see my other posts regarding diagnosis*) until suffering from symptoms again in 2004 and almost demanding to see a cardiologist. This started the ball rolling, I was lucky to be referred to the electrophysiologist I still see, the only one that suspected HCM, and would not stop until he found it! Thank God for him!

Medication (Toprol & Sotalol) has helped my assorted arrhythmias quite a bit, and I finally had an ICD/pacemaker implanted in 2009, replacement in 2013. Luckily I've not been shocked yet, just paced. However, I felt so much stress relieved after my implant, knowing I had a little "insurance" box in my chest if I ever needed it.

[Sunnie2day]

In addition to the excellent suggestions from Shar28 and Siouxbee19, you might consider making a ten minute appointment with your GP saying when you book that you need answers to some questions.

I did that after my first consult with the cardiologist - long story short I was so happy he ruled out what I was most worried about that my brain fogged over and I forgot to ask questions (like 'Yes, but what does this mean, exactly?').

The next day I booked 'a tenner' with the GP, wrote down the questions I should have asked the cardiologist, and asked those questions at the appointment (a short few days later) - she answered everything completely and I was out of there in less than ten minutes.

Put much of my anxiety to rest and made the wait for the next appointment with the cardiologist so much easier to bear. Bonus: after the GP visit I knew all the what-why-how including what I could/should or not do during the wait.

[Mg27 in reply to Sunnie2day]

My GP don't have clue what there doing the hospital told me to change as they had me back and forth to get my inner ear checked and it was me heart all this time, so I leave it up to hospital but there taking there time

[Sunnie2day in reply to Mg27]

Oh that is depressing when the GP is clueless (been there-done that and the only thing that finally got me the proper medical care was moving house to a postcode that included a new GP surgery)!

Right, so, ring the cardiology unit and say you have some questions you forgot to ask the cardiologist, is there someone you can talk to over the telephone or do you need to book an appointment with the cardiac nurse - that should get your answers for you right quick.

Also, you can try the BHF cardiac nurses Helpline number:

0300 330 3311

I've never used them as my GP and cardiology unit are very helpful but everyone who has used the Helpline say the nurses are amazing.

Keep us posted on how you're doing. The support here on the BHF HealthUnlocked pages are what keeps me from going into full-blown panic, I don't think I could be getting through my most recent heart health problems without the support I have here.

[Mg27 in reply to Sunnie2day]

Iv not even seen a cardiologist they just keep sending for appointments but no one is talkinh or explaining anything to me and I am panicking as heart conditions run in my family and lost loads to it , I might just give that number a call

[CPL593H]

I have HCM, when recovering go gently and try to watch your calories as it’s easy to put on weight.

[Mg27 in reply to CPL593H]

Weight I need to put on as iv lost loads since April.

[CPL593H in reply to Mg27]

Sorry, it was different for me, reduced activity and beta blockers meant an initial weight increase.

[Qualipop]

Nothing to stop you simply changing GP or seeing a different one at eh practice. YOu simply sign on elsewhere and your notes get moved in about a week. Of course you need to tell the hospital too.

[Hidden]

I have HCM and over the last 3 years it has started to cause problems. In my case I have benefited from a CRT pacemaker and access to quality drugs including Entresto. This has helped my EF improve from 28% to 39%.

The solution may well be different for everyone. I suggest you miss out the doctor and speak to a Cardiologist, ideally an EP.

[siouxbee19]

I wanted to add that I am in the U.S., so there will obviously be a difference as far as health care, etc... even though the condition is the same. Just wanted to throw that out there, once on a different thread I was told thanks for my response, but they were waiting for someone from the UK to answer. Didn't want to confuse anyone.