Hypertrophic Obstructive Cardiomyopathy (HOCM)

[Eyeballs]

Hi All, I've been recently diagnosed with HOCM. Whilst it's been a bit scary I've had brilliant support and now know it's best discovered than it going undetected. The reason for my post is to reach out to other HOCM members, so I might share and understand experiences. My heart has thickened by 50% and the wall has been measured as 30mm. I've been told this is 'significant' but as it's all new I don't have anything to compare it against. in the next 6-8 weeks I'm due to have an ICD fitted and undertake an Angioplasty procedure. Hope to hook-up with other HOCM members.

[HOCM007]

Hi there. I am almost the same as you. Similar thickness. Was experiencing sob and was progressing. Had an icd implanted in April last year, and had a septal Ablation just over 3 weeks ago. Am still going through the healing process from the Ablation. Am taking metroprolol 142.5mg daily. Hang in there you are not alone

[Eyeballs in reply to HOCM007]

Hi, thanks for getting back to me. Do you feel any different since having the Septal Ablation? I've been told I can't have any surgery, as the thickening of my left venticle is at the bottom. Apparently the septal procedures currently available aren't suited to where my thickening is located. Have been active all my life, so a bit gutted that I'm no longer able to do what I was doing months ago. Not sure if the thickening has reached it's max or if the situation is going to get worse. Had all the scans, so my consultant at least now has a baseline to measure against.

So, what's your story and was there anything that cause you to seek help?

[HOCM007 in reply to Eyeballs]

I was always quite active, and when I was 28 (10 years ago) I was in the middle of a work presentation and got dizzy, managed to get through it and went to a doc afterwards. He heard a murmor and referred me to hospital and the rest is history. I was fine for the first 7 years, didn't really change what I was doing. Then about 3 years I began to notice I was short of breath and could feel my heart beating at night when I was trying to sleep. After a few scares an icd was deemed necessary. Makes me feel a lot safer. Haven't had it fire but it's a good insurance policy. The Ablation was fine, in still recovering from it but can feel that the "force" of my heartbeats are less and I don't feel my heart as much. It takes about 3 months to heal fully. All in all it's been a journey but I'm glad that I know about it and can be proactive. Sudden death is no joke when it comes to the first symptom

[Eyeballs]

Yes, it was a real bolt out of the blue. I suffer from a weird type of Asthma. Blood related rather than airborne. And have been on steroids for the past 10 years (I'm 51). I've always put my breathlessness down to my Asthma. A few week's ago I watching '999 what's your emergency'. The programme focused on this bloke who asthma and was struggling. The ambulance took him to hospital and during checks they found he had a heart condition and unfortunately died. I looked at my Wife and decided to get an appointment with my Doctor. He put me on an ECG and spotted a T-Wave inversion. Got fast tracked and at first they thought I had angina. In a weird way I wish it was angina. After the ultrasound they spotted the thickening of the wall of my heart and like you say the rest is history. Still early days though. Have had a few wobbles (feeling sorry for myself), but right now feel very positive. I also see the ICD as being an insurance policy.

[HOCM007]

Totally. Once it was in I felt a lot better. They are life savers of that there is no doubt. Once it's in it's all about proactive management of your symptoms. It's ok, you are certainly not alone and as long as they keep an eye on you life expectancy is not affected. Stay positive and stay hydrated (makes a HUGE difference trust me)

[HOCM007]

Hi there Eyeballs - just checking in to see how you are going? I am now 3 months post ablation and am feeling really good. All symptons have gone and I feel like a new man. Hope all is well with you. I was at 30mm and scan yesterday has me at 21mm, gradient has gone from 6 metres per second to 2 metres per second and its still scarring so hopefully more improvement to come. If you can get an ablation go for it, and the ICD is always there as backup.

[Eyeballs]

Hi, thanks for reaching out. It’s fantastic news that your ablation has been successful and you’re getting back to normal. I’ve joined the HCMA FaceBook Group and can see others that have had different types of surgery. It seems the skills in the US make surgery a possibility. That said, I have been liaising with other ‘similar’ suffers. They have also been told their thickening (like mine) is to low down in the Left Ventricle to meet surgical success requirements. I have contacted the Mayo - Rochester clinic, who responded yesterday. They need to see my notes and scan results, which costs minimum $7000. I obviously don’t want to shell out this dosh only for them to say “sorry, we can’t help you”. It’s one of those dilemmas, which I haven’t yet got my head around. Still waiting for my ICD appointment. Had my Angiogram the other week, which didn’t pick-up any other underlying issues. Oh, I’ve got gout in my left ankle and have been bed bound since last Wednesday........joy!

You mentioned gradients 6 metres to 2 metres. Not sure I understand what this means?

[HOCM007]

Hey there mate how are you going? Hope all is well

[Lhatty]

Hi, I am 39 and was diagnosed with hocm with a loud murmur in April this year due to breathlessness and chest pain on exertion. I started on Bisoprolol but am now trying out verapamil due to the Bisoprolol making my murmur louder/harder. I was constantly aware of my murmur, which makes things worse as it’s a constant reminder that I have this condition. So far since starting the verapamil it seems to be making the murmur subside but I think my chest pain and breathlessness are coming back! I’m wondering if there is something I could take which would deal with both

Of these issues and not just one, will just persevere for a few weeks and see what occurs. I have also had the gene test and I have MYH7, which other family members have also. My mum has no symptoms but they found the gene in her. I am waiting for my children to be tested now ☹️ I have obstruction, my gradient is 49 and thickness is 23mm. I do not qualify for a icd with a 2% chance of sudden death. How did the angioplasty go and I take it you now have the icd fitted? Hope you are doing well and we can exchange help and advice on here x

[CPL593H in reply to Lhatty]

Hello Lhatty

Hope you are well and sorry for jumping into an old conversation.

I’ve got a diagnosis similar, but not quite as bad as yours. I have a thickness of 23mm (don’t know my gradient), with a 2% sudden death. Been classified as severe HCM but non obstructive at rest. Genetic testing and possibly stressed exercise tolerance test to come.

How are you getting on and have you any tips for living with your condition?

[HOCM007]

Hi there LHatty sorry for the late reply how’s it going?