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mistymopps3
@mistymopps3

Posts: 12
Joined: Oct 13, 2016

Apical Cardiomyopathy

Posted by @mistymopps3, Oct 13, 2016

I have apical cardiomyopathy which I believe is quite rare. My wall thickness is 1.34cm. Can anyone tell me how bad this is or whether it is just a bit thicker than normal. I have no obstruction. The thickness hasn’t increased since diagnosis 3 years ago

REPLY

Hello, @mistymopps3. I had never heard of this heart disorder before, however, I looked it up on Mayo’s website, http://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/dxc-20122103. If you don’t mind sharing more information about yourself, could you tell us how this was diagnosed and what type of symptoms you have. What type of information has your doctor given you? Best wishes to you!

Hi @mistymopps3. I have LV hypertrophy too, but not apical, so your symptoms may tell the difference with mine, and Teresa has asked you to tell us more about that so I can gauge whether I can be helpful. My diagnosis is now 8 years old, and rarely have I had definable symptoms other than swollen ankles and feet from edema. Until this year, we attributed the edema to medication for hypertension — calcium channel blockers, for example — which lasted for several weeks. In March 2016, the edema returned, indicating reduced efficiency of the heart in circulating blood to and from my feet. But last month, the edema resolved itself, and I have no swelling now. Throughout the last 8 years, I had no other symptoms, and the edema didn’t limit my activity. I can’t report the thickness of my LV wall; I haven’t asked my medical team for that factor. Looking forward to any further information you care to share so we can press this discussion forward!

I add my welcome Misty.
We have several members talking about hypertrophic cardiomyopathy on Connect. Some have the obstructive type of HCM, hypertrophic obstructive cardiomyopathy (HOCM) and others the non-obstructive type, which is of course apical hypertrophic cardiomyopathy.

I’m tagging fellow Connect members @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @23273333 to bring them into this discussion about apical HCM and possibly address your question about the wall thickness.

Also, Misty on Nov 2 we are hosting a webinar on “Hypertrophic Cardiomyopathy and the Surgical Treatment Apical Myectomy” with Mayo Clinic cardiac experts Drs Schaff and Ommen You can sign up to take part here: http://mayocl.in/2dmWhdI

@hopeful33250

Hello, @mistymopps3. I had never heard of this heart disorder before, however, I looked it up on Mayo’s website, http://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/dxc-20122103. If you don’t mind sharing more information about yourself, could you tell us how this was diagnosed and what type of symptoms you have. What type of information has your doctor given you? Best wishes to you!

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I had no idea I had any problem until I went in for a hysterectomy in 2012 and was told I had a heart mummer. They delayed the op until the heart had been assessed and I was told I had apical cardiomyopathy. I have been for a check up each year since although I haven’t been called this year. The wall is 1.34 cm which from reading about doesn’t seem too bad but my cardiologist is always in such a hurry he won’t discuss anything. In 2015 I was put on a 7 day heart monitor and found to have quite a few non sustained Ventricular tachycardia. Again I wasn’t aware of this. The cardiologist said I may be at risk of sudden cardiac arrest but after discussing it with his panel, it was decided not to do anything about it and a ICD wasn’t necessary at this stage. I’m on calcium channel blockers and beta blockers (only a small dose) for high blood pressure which they thought had caused the cardiomyopathy. The trouble is I am now beginning to get paranoid about it and feel that if I can find out more I may have some peace of mind.

@predictable

Hi @mistymopps3. I have LV hypertrophy too, but not apical, so your symptoms may tell the difference with mine, and Teresa has asked you to tell us more about that so I can gauge whether I can be helpful. My diagnosis is now 8 years old, and rarely have I had definable symptoms other than swollen ankles and feet from edema. Until this year, we attributed the edema to medication for hypertension — calcium channel blockers, for example — which lasted for several weeks. In March 2016, the edema returned, indicating reduced efficiency of the heart in circulating blood to and from my feet. But last month, the edema resolved itself, and I have no swelling now. Throughout the last 8 years, I had no other symptoms, and the edema didn’t limit my activity. I can’t report the thickness of my LV wall; I haven’t asked my medical team for that factor. Looking forward to any further information you care to share so we can press this discussion forward!

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Apical is in the base of the heart. There’s a video being shown by Mayo on 2nd November. That’s how I came on to this site because I thought I might find out more. Good luck with your LV hypertrophy.

@colleenyoung

I add my welcome Misty.
We have several members talking about hypertrophic cardiomyopathy on Connect. Some have the obstructive type of HCM, hypertrophic obstructive cardiomyopathy (HOCM) and others the non-obstructive type, which is of course apical hypertrophic cardiomyopathy.

I’m tagging fellow Connect members @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @23273333 to bring them into this discussion about apical HCM and possibly address your question about the wall thickness.

Also, Misty on Nov 2 we are hosting a webinar on “Hypertrophic Cardiomyopathy and the Surgical Treatment Apical Myectomy” with Mayo Clinic cardiac experts Drs Schaff and Ommen You can sign up to take part here: http://mayocl.in/2dmWhdI

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Thanks for welcoming me. It was the webinar which I saw which directed me to you. As you can see from my post above I have shown nsvt on a monitor although I didn’t realise. I did go into A&E (I’m in the UK) on 1st July with an irregular heart rate which I think may have been caused by working outside in the heat (it was a very hot day). I was put on a 24 hour monitor afterwards, but there has been no communication from the hospital since and although I’ve phoned I’ve got nowhere. Hence I’m determined to find out as much as I possibly can about apical cardiomyopathy.

Welcome, mistymopps3. I have the non-obstructive form of the disease. My symptoms are well controlled by medication and I have an ICD because i did go into cardiac arrest six years ago (before diagnosis) I agree that searching for more information is critical. I was told for 23 years I did not have this disease and it turns out I did. One thing I would also suggest in addition to the Mayo seminar is to contact the Hypertrophic Cardiomyopathy Association (HCMA) as they can provide a great deal of help on this. http://www.4hcm.org If you are on Facebook, I can send you an invitation to their group on Facebook because we have some very knowledgeable people based in Europe who can help you sort out where to go in the UK to get some answers. We have to be our best advocates, especially with this disease that far too many cardiologists do not understand.

For those of us with the non-obstructive form (apical) there are no real surgical options, we just work with our doctors to deal with the symptoms. I am looking forward to the Mayo seminar to see if I can get some more information. I have mostly exhaustion and trouble climbing stairs, walking distances, and dealing witht he heat (or any extreme temperature, but heat is the worst.) So many things to say, but let me know if you have specific questions.

Hi Pat Mattos, Thanks for that. I do belong to the HCMA facebook page which I’ve found very useful. I get arrhythmia (nsvt at the moment) and am waiting for the results of the latest 24 hour monitor. Here in the UK everything is so slow. I’m also waiting to see if the DVLA will take away my driving licence. My cardiologist has to support my driving request. It’s all very stressful. The heat took me into A&E on 1st July so that is what has sparked the driving licence problem.

@colleenyoung

I add my welcome Misty.
We have several members talking about hypertrophic cardiomyopathy on Connect. Some have the obstructive type of HCM, hypertrophic obstructive cardiomyopathy (HOCM) and others the non-obstructive type, which is of course apical hypertrophic cardiomyopathy.

I’m tagging fellow Connect members @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @23273333 to bring them into this discussion about apical HCM and possibly address your question about the wall thickness.

Also, Misty on Nov 2 we are hosting a webinar on “Hypertrophic Cardiomyopathy and the Surgical Treatment Apical Myectomy” with Mayo Clinic cardiac experts Drs Schaff and Ommen You can sign up to take part here: http://mayocl.in/2dmWhdI

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I thought it might have been the webinar that brought you to Connect. I’m thrilled so many members have greeted you. You will meet more during the webinar too. I might suggest you sign-up for the webinar. That way you’ll get an email reminder the day before and an hour before. No need to translate into your time zone.

@mistymopps3

Hi Pat Mattos, Thanks for that. I do belong to the HCMA facebook page which I’ve found very useful. I get arrhythmia (nsvt at the moment) and am waiting for the results of the latest 24 hour monitor. Here in the UK everything is so slow. I’m also waiting to see if the DVLA will take away my driving licence. My cardiologist has to support my driving request. It’s all very stressful. The heat took me into A&E on 1st July so that is what has sparked the driving licence problem.

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Glad you are on their Facebook page!
I still have NSVT, which freaks out non-HCM doctors., HCM doctors, not so much, particularly with my ICD in place now. I hope you get some answers from the 24 hour monitor soon. I’ve had it take extra time here as well if several doctors needed to look at it. I hope you get to keep your licence. Additional stress is not needed with this disease!

Thanks Pat. I wonder if that’s why the doctors in A&E were so concerned and insisted that I saw a cardiologist before I could go. She came in at 10 pm and said it’s OK you can go now. No explanation but now I’m thinking that A&E doctors perhaps over-reacted. I am really stressed out about the driving licence as I can’t do without it. I’ve voluntarily given up my C1 bit which allows me to drive my horsebox. I can re-apply for that if I get to keep my ordinary licence. At the moment I’m able to drive pending medical enquiries but I can’t make too many plans as a letter in the post tomorrow may change everything. My cardiologist has to complete a questionnaire in support but arrhythmia which I had in A&E is taken very seriously I understand from a driving point of view (my pulse was irregular but I had been out in the sun stupidly on perhaps the hottest day of the year) Actually I feel better just typing this out and telling you – hope I’m not burdening you with it.

I’ve signed up to the webinar on 2nd November. I hope I’ve done it OK. It did say internal error but I was still able to go on and register

@mistymopps3

I’ve signed up to the webinar on 2nd November. I hope I’ve done it OK. It did say internal error but I was still able to go on and register

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I checked. You are registered successfully 🙂

Hiya Misty. I’m sorry I didn’t respond sooner, I’ve been pretty busy lately, but when I seen Colleen’s post I wanted to come on here & let you know your not alone. I was diagnosed with Apical HCM Non Obstructive too. I also have trouble climbing stairs, exhaustion, the heat, or the Cold. I end up with chest pain, and trouble breathing if I climb stairs, and I have trouble breathing in the heat. I’ve noticed that I have swollen legs as well, usually it’s limited to my left leg, but sometimes my right leg swells. I was first diagnosed with it because I was waking up at night with severe chest pain, and felt like I was suffocating, I’d hear wheezing in my chest with a snap crackle pop sound, and I’d have to sit up to be able to catch my breath. It still happens at times, It’s pretty horrible. 🙁 My Cardiologist told me I didn’t really need any new medications for my HCM, he said that the Metroprolol is the best thing for it and I was already on that. But one of my local Cardiologist increased my dose of Metroprolol cause the chest pain I’ve had at night has increased in frequency lately. So he prescribed me an extra 50mg of Metroprolol to take at night before I go to sleep. Unfortunately we are tight on money & I ran out of those pills. 🙁 So now I gotta wait til Lee gets off of LayOff and gets his first paycheck from going back to work before I can get more Metroprolol. Anyways I hope everything turns out ok with your 24 hour halter monitor! *hugs*

Liked by Jim Morris

Thank you @PatMattos and @Sensation for answering my virtual “page”. It is so good to know that I can rely on you to be there to help out a fellow HCM-er. #gratitude!

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