Chat about cardiomyopathy?

[macwoozy]

A while ago, the subject of cardiomyopathy came up, I think it came up on Misdee's thread about her dh. I found that quite a few of you suffered from cardiomyopathy or had a relative who did, either dilated or hypertrophic, and I wondered if anyone wanted to compare notes. {I was a new girl then but since changed my name )
I have hypertrophic cardiomyopathy and it would be great to talk to fellow cardiomyopathy sufferers, how it affects them daily, when and how did they develop it, what medication they are on, if any, and if their children are affected. This is my biggest worry, that my ds will develop it, its a 50% chance. All this is particularly on my mind at mo, as I have an appt with my cardiologist tommorrow and I always worry about what will be said.
Anyway just thought that somebody out there might want to chat about it

dramaqueen - sorry about your dh.

macwoozy - sounds like your ds is being well looked after.
Personally I too think it's important to test regularly through puberty. It puts a huge strain on the body (we've seen it already with dd) and in secondary school they tend to be more competititve and push hard without recognising the signs that they're overdoing things.

Strawberry - don't get me started on DLA

Potty, what type of cardiomyopathy has your dd got? Do you constantly watch over her when she's being too active?
Sallystrawberry, do let me know how the doctors went regarding the blood pressure. What hospital does he attend? Thats nice of you to say I can rant to you, but might not be a good idea because I'm an absolute pessimist and I don't want to bring you down with me.
Just out of interest does anyone experience the arrythmias that sometimes happens? I got 10 episodes of ventricular tachycardias on a holter many years ago. According to the text book its just about the worst type you can get. I've been put on Amiodarone but I'm going to bring this up tommorrow. I had catheritisation last year but they couldn't induce any, but I'm sure I experienced some last week which totally freaked me out.

thanks for your response ladies, think i'll phone the dr tomorrow actually and push thro another appointment for both.
sally- nope, no-one in dhs family has had or has got HCM. more than abit of a shock, absolutely horrendous part of my life, but thankfully many moons ago now. I am remarried, and have another dd as well. all that is left 'hanging over my head' is the regular testing for ds and dd1.
I used to go to poole hospital, will now be southampton i guess since moving here.

Thanks alot for that thread Sallystrawberry, I'll have a good look at that

macwoozy - dd has aquired DCM. Initally she had an anomalous origin of her left coronary (from pulmonary), it wasn't picked up until she had struggled along to 4 months and the damage to he LV was huge. She now also has pulmonary, mitral and tricuspid valve problems alonside pulmonary stenosis. To her credit she's very sensible and aware of how far she can push herself (she's 11) and school have been great, she does as much or as little as she's able and its never been a problem. We have secondary coming up though and I don't feel quite so positive about that! Obviously it is a worry but things could be so much worse - an online friend lost his dd this week to congenital heart disease, she was 4

Dramaqueen - Southampton is a wonderful hospital, especially with the children. I know of a family with 3 children with DCM who go there.

yes have explained it to them from the start. very scary for them evrey time even tho the testing is nothing awful in itself.
glad to hear southamptons a good place to be. have appointment with my gp tomorrow, whihc should get the referral off and it under way for more testing. if i just 'left it' would the drs every contact me? i wouldnt just leave it, but i always feel as if its ME pushing for appointments and sorting it out, rather than the medical people.

Potty1, That must have been alot to take in with all your dd's problems. Will she need surgery at a later date? Is it for definete that she can't have children, or will that be too much of a strain on her heart. I know my situation is different to your dd, but throughout my entire pregnancy I had the best care imaginable, and at the time of delivery, my partner counted 11 people in the room. I had complete trust with the doctors, and even though I knew that problems could arise, I felt strangely relaxed and calm.

Dramaqueen I'm glad to hear you've made that appt, even just to put your mind at rest.

sallystrawberry, hows it going with your dh's blood pressure, have they got it under control yet?

macwoozy - I've spoken to mums who have worse problems than dd so I'm hopeful that she will be able to have a safe pregnancy. Things have come so far just in her lifetime. If she had her surgery today, she would probably have been put on ECMO and have been given an LVAD for a short time and these weren't available then. And also children with congenital disease have access to proper care with Adult services whereas only a few years ago they were discharged to cardiologists who only had experience of coronary artery disease in an aging person. I remain positive (smile) and stories like yours only reinforce that.

Just a reminder for folks on this thread that Arrhythmia Awareness week started yesterday. Here is a list of conditions that come under the 'banner' of Cardiac Arrhythmias....

Ablations; Atrial Fibrillation; Atrial Flutter; ARVC; Biventricular Pacing; Blackouts/ T-LOC; Bradycardia; Brugada; Cardiac Arrhythmias; Cardiac Resync Therapy (CRT); Catheter Ablation; Cardiomyopathy, Fainting; Hypertrophic Cardiomyopathy; Implantable Cardiac Defribillator (ICD); Long QT; Pacemakers, Pallid Syncope; Palpitations, Paroxysmal Supraventricular Tachycardia; Reflex Anoxic Seizures; Stoke Adams Seizures; Sudden Arrythymic Death; Tachycardia; Vasovagal Syncope; Ventricular Fibrillation; Ventricular Tachycardia; Wolff-Parkinson-White Syndrome

If you suffer from or know someone who suffers from any of these, they may find the Arrhythmia Awareness Week information helpful.

Arrhythmia Awareness

butterfly

Thanks Butterflymum, I didn't know there were so many conditions relating to cardiac arrythmias. You're doing a great job making people aware of this.
What a worry for you threadkillingstrawberry, I really hope it goes all well for your dh today. At the very least your gp should make a hurried appt to see the cardiologist. The constant tiredness should really be investigated. Do let me know how it went. Good luck.

I have this and have had 1 succesful pregnancy and am considering another.The statistics have changed and the outcome of these pregnancies is v good unless you are in a v high risk group

well you all know my dh has DCM. he has been out of hospital for almost a fortnight now. he currently has urine infection so is feeling very low. he is just about pottering around the home, not doing too much. he has attempted to do some shopping a couple of times but it exhausts him. he has an appointment at harefield on the 15th (ithink) to see Dr Banner about transplant prioty. as far as we are aware he is now on the list. they need to get dh mobile number and other details.

an online friend of mine (whose wife is on here sometimes) had a heart transplant 3 weeks ago. he is now home.

i'm not getting much rest at night lol. but am having afternoon naps when possible.

misdee I hope your friends story gives you some encouragement.I don't know how you do it with a new baby.A kidney infection when you have a heart condition is very tiring he'll be a lot better when the abs kick in