Would be good to chat generally

[Twins11]

Anyone else got hypertrophic cardiomyopathy ... happy for general chat/ tips

[Wodney1966]

Hi miowd I've got dilated cardiomyopathy always gd t talk lol

[Twins11 in reply to Wodney1966]

Thx but different to hypertrophic.. hope you continue to live life to the full

[CPL593H]

Hello Twins

I’ve got HCM, I spotted a few on here, happy to chat

[Twins11 in reply to CPL593H]

Hi how were you diagnosed and when . Does it affect your life . I had genetic counselling luckily mine is not genetic which is very unusual

[CPL593H in reply to Twins11]

I’ve just put a decent intro out to the whole group.

I was diagnosed after a suspected heart attack on June 12th this year. Had a clear angiogram, the HCM was picked up by echo and confirmed by mri. It is affecting my life, limited to gentle mobile exercise (walking on fairly flat ground, avoiding too many hills). Had to give up my job as a chimney sweep, start an office job soon.

Am going through the genetic angle atm.

[Twins11 in reply to CPL593H]

I have to log onto this site everything which is annoying . Only really want to chat with one it two. Don’t read all the posts as find it depressing

[Cricket23]

Hi Twins11,

I have CM and am happy to chat.

Briefly, as I'm just off to the gym...

They found mine in 2003 at a routine company medical. I was told it was mild and would not change. I have always wanted to fly, so got my private flying licence shortly afterwards, one of the conditions being that I get my heart checked every 1 - 3 years.

So, since 2003, it's been checked loads of times - exercise tests, 24/48hr Holter monitor, Echo cardiogram and MRI. Each time I've been told, 'no change', until this year.

In early August, my cardiologist told me it had changed and that they had also found a blot clot in my heart caused by the CM. A few days later I had massive palpitations (Pulse all over the place, ranging between 80 and 195) for 1.5hr, (this happened twice on the same day) and a few days later had a combined pacemaker and defib fitted. Post op, I now take Bisoprolol and Warfarin.

It's been a total shock and very scary, but 3 months down the line I'm gradually coming to terms with it. I have resumed work full time, and also my exercise regime - I do loads of it, and push myself hard. The Dr knows this and is happy. In fact they've just adjusted the pacemaker to take the 'breaks' off a little so my heart can do more.

I fully admit that it's not been easy. I was on 5mg of Bisoprolol which totally wiped me out energy wise. Now, with my cardiologists agreement I take 3.75 of Bisoporol at 6pm.

As I say it's not been easy either physically or mentally, but my family, friends and work have been very supportive.

Sorry for the long reply.

BTW, if it helps paint a picture, I'ma 58 years young male.

How are you getting on living with your condition?

Yours,

Cricket23

[siouxbee19]

I have HCM. Definitively diagnosed by genetic testing in 2009 after years of back and forth with several doctors, lots of other testing, even knowing I had family history of HCM and SCA. Would love chatting and sharing info.

[Twins11]

I have had genetic testing which took 5 months to get the results ( very worrying time ) luckily mine is not genetic so cannot pass it on . Just had yearly check and nothing has changed . Luckily I am retired so do not work . I try and go out as much as I can . Have just stArted playing doubles tennis again shiva us great but to wet today . I live on the edge of south Cambs / Herts border

[CPL593H]

From my perspective playing doubles tennis is doing well at least from a physical perspective. Do you have a winter sport

[Twins11 in reply to CPL593H]

Play tennis all the year round live in south Cambs so a drier part of the country . It is also very social with coffee / chat/ lots of laughs after .

[CPL593H in reply to Twins11]

That’s good, all I can manage is walking, even then I have to be careful with hills and walking fast, I’m 50 so hopefully still got a while to live.

[Marmitesunny]

Hi, I’ve had HCM for years now, I’m 49 and lost both my dad and brother to the disease, I would like to know other people’s experiences to, I am currently feeling very fatigued and my heart rate drops under 50bpm, does this affect anyone else the same?

[Twins11 in reply to Marmitesunny]

Mine was diagnosed April 2017 could of had it all my life . Have just been given ho ahead to play doubles tennis again twice a week all year round ... starting with one set and an working up to 2,I luckily don’t have any pain I do get tired easily . Just had yearly holter test and echo luckily no change in the year . I did occasionally get AF my bisopetL was upped to 3.25. I also take apaxaban and a statin . I go to hygienist every 4!months and dentist every 6 months . Heart rate is between 56 /60 which is what consultant is aiming for . Had genetic testing nothing was found so just a 1 off. I am retired which helps and to keep active and am a very social person .