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Original poster

Ds's heart test is due soon and I'm becoming a right mess worrying about it.

29 replies

macwoozy · 13/01/2006 17:39

On Tuesday my ds has an appt at GOS to see if he's developed a hereditary heart condition. He has a 50% chance of developing it. I'm a complete and utter nervous wreck waiting for this appt, and I can't bear the waiting any longer. I've gone through the internet trying to find all I can with regards to children with this condition, and the statistics of sudden death are just scaring the hell out of me. 6% annual mortality. This might not sound a lot, but that's equivalent to all the children in my ds's class not surviving past 5 years. Please someone tell me to pull myself together, he hasn't even been diagnosed with it yet FGS, but I just need to sort my head out before the appt in case the outcome is not so good on Tuesday.

OP posts:
misdee · 13/01/2006 17:43

just keep calm. i also have top get my kids tested 'just in case' and i think there is a 25% chance they have inherited dh condition if his wasnt a virus (we were told it was mroe likely it was a virus but tests came back inconclusive).

Dont read the web, thats my best advice, i search when peter was dx and almost all the sites said he'd be dead in 5-10years. then i found the CMA site.

I always imagine the worst as well, so in a way i am mentally prepared for the worst, but its such a releif each time thats nothing is wrong.

beansprout · 13/01/2006 17:43

This must be very, very hard for you. You can't worry about things that haven't happened yet. Dh tells me this a lot. Doesn't stop me worrying but it does help. For every minute that you are worrying you are missing the time to fully appreciate all that you have. Try to distract yourself until you get the result. You can't change it, you will only make yourself unhappy in the meantime.

Really wish you well and am keeping my fingers crossed for you xx

Original poster
macwoozy · 13/01/2006 17:57

Thank you both.

I try and stay calm, and I've been doing so well, I though I'd be like this at Xmas, but it's only really started to affect me in the past week now the appt is drawing nearer. I can't help but think of the worst outcome, and then I imagine my ds not being around, even though I know a large proportion of people affected can live reasonably good long lives. I always think the worst, and in my family health problems have always been high on our list of worries. But I know I'm being stupid for worrying so much with something that might never happen. Especially when you know others like you Misdee are going through such more worrying times, I don't know how you get through it, what with Peter and the fear of your children getting DCM, you've got a great positive outlook.

OP posts:
Original poster
macwoozy · 13/01/2006 18:20

Misdee, sounds a bit stupid me saying you've got a great positive outlook when you've just said you imagine the worst. What I should have said is that I admire your strength.

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misdee · 13/01/2006 18:21

pmsl. i totally get where you are coming from, dont worry. i console myself that dcm is more comman in males, but then feel bad for all the males out there. i know a lady who has 4 sons, 3 of them have dcm as well as her dh. now she is amazing!

noddyholder · 13/01/2006 18:23

I am also waiting for an appointmrnt for my ds he is 11.I saw my consultant yesterday and he has kindly offered to do it at my next check up rather than send him to the childrens heart doctor which I think will be easier to start with.I remain as positive as possible by looking at the statistics on how well cardiomyopathy patients do if diagnosed early and treated I find the guilt quite difficult but then I have had 2 kidney transplants and cancer and have been successfully treated all the time having a dodgy heart so it is definitely not a death sentence and pre emptive beta blocker treatment is excellent at keeping the heart regular.Many people live long happy normal lives with these conditions and it is worth remembering that xxx

tamum · 13/01/2006 18:26

macwoozy, I am so sorry. It must be awful- dd had an ECG a couple of months ago because of ectopic beats, and she was fine but I was absolutely sick with fear.

I know it's of bog-all help but if I can ever help with anything to do with genetics just ask.
xxx

Potty1 · 13/01/2006 18:35

Hi Macwoozy - thought this might be you.

This run-up to the tests is horrible.... it's not silly to be worried, just natural. We have cardio coming up next month and much as I know dd is well, it's my way of coping to think the worst. Will be thinking of you on Tuesday and hoping for the very best outcome. For your ds too noddy.

Original poster
macwoozy · 13/01/2006 19:33

Thanks
I pray that you will both hear good news when your children next have their appts, I really do. (Although I'm not a religious person but I have had a few chats with the big man upstairs just lately so we're on friendly terms)
Noddyholder do you know off hand where I can find these statistics of better prognosis with early diagnosis and treatment, as I worry myself silly that if ds is to be diagnosed at his young age would normally mean a worse prognosis, even with treatment. Here I go again painting such a dark picture, I was so positive for my ds when I recieved my defib knowing that he too could recieve one, but that didn't seem to last too long.
How did your appt with your consultant go yesterday?

Thanks tamum, I've already noted your name before for someone to ask with regards to genetics. I remember we spoke briefly once when the subject of stem cells and a possible cure of DCM came up.

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noddyholder · 13/01/2006 19:43

My consultant has always maintained that early intervention is the key but as it is so rare as most people don't even know they have it that is hard to achieve.Putting someone on beta blockers as soon as they are diagnosed is an excellent treatment.I am 40 and as far as I know have always had this condition and it has never stopped me doing anything and only got to the symptomatic stage because I had been on kidney dialysis which stressed the heart before that I was symptomless and not particularly healthy in my day to day life I will see if I can find some stats for you I am going out tonight so bear with me!Do you have HCM or DCM?

Original poster
macwoozy · 13/01/2006 20:58

Enjoy your night outI have HCM, diagnosed at 21, I don't know what age I developed it, but I guess it was during my teens, as heart tests as a child produced nothing. Since my ICD I've felt really positive, stopped worrying about palpitations etc. But of course now ds's appt is approaching my mind is all over the place again. Don't quote me on this but I'm sure I read somewhere that a child doesn't necessarily inherit the parents cardiomyopathy but can actually suffer from any type.

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tamum · 13/01/2006 23:05

macwoozy, I remember that conversation well. I have just looked up a few papers, and although it was just a cursory glance they all seemed to suggest that although the disease in general is very variable, there is quite good prediction of the severity (or otherwise) of the condition from the gene and mutation involved. As your ds would by definition have the same mutation as you (if he has one at all, of course) that would suggest that he would be more like you then the general population of people with cardiomyopathy. I will happily look into it a bit more if it would help, although you sound very knowledgable already.

I am keeping everything crossed for you.

Original poster
macwoozy · 14/01/2006 13:57

Tamum I remember reading a few years ago about some of the faulty genes identified with HCM. Of course most of it went right over my head, but I do recall certain ones had a very severe outcome. One gene in particular [Arg...???] was associated with the death of all affected individuals before 40 years of age, due to massive hypertrophy. I can't remember what % of HCM sufferers carried this gene, but I know I should bear in mind that this type of gene all contributes to the statistics of sudden death of HCM sufferers. In my case I am the only member of my family with HCM, but I've been told that ds will still have 50% chance of developing it, because, I presume, I've developed a mutation to pass it on. As you can tell I know almost zilch about genetics but I know if ds is to be diagnosed then I'll want to learn more about it. Then I'll be hounding you

I've just read on a BBC doctors website, written Dec 05, that 60 - 70% of HCM sufferers will all die of sudden death. Those statistics sound rather alarming and surely can't be right

OP posts:
Heartmum2Jamie · 14/01/2006 19:55

Hi Macwooozy,

I just wanted you to know that I will be thinking of you on Tuesday. I agree that waiting for the appt seems harder than the appt itself. My ds's next cardio appt isn't until June, but I know that the last week in May the worry will set in. I am very much like Potty in that I think the worst as my way of coping.

I hope that all goes well. I have never considered myself to be a religious person, but have certainly done my fair share of "praying" since our journey started. I will say one for you and your ds.

Original poster
macwoozy · 15/01/2006 22:17

Thank you Heartmum2Jamie and I hope all goes well for your ds too in June.

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Potty1 · 17/01/2006 15:06

Been thinking about you today Macwoozy. Hope it went OK.

Heartmum2Jamie · 17/01/2006 16:10

Thinking of you here too. I will check back later for an update. I hope that all is going well.

tamum · 17/01/2006 16:26

Macwoozy, I have everything crossed for you.
xxxx

Original poster
macwoozy · 17/01/2006 17:50

Thank you so much for thinking of me today

Well I'm so relieved to find out today that his echo and ecg are entirely normal so all is great. I'm so stupid to get myself so wound up over something that might never happen, but I couldn't help thinking of the 'what ifs', you wouldn't believe what different scenarios were going through my head. Anyway his cardiologist doesn't want to see him for another 2 years, so please shoot me if I ever start worrying about ds's health until then.

Thanks for your support, especially since many of you have so much to contend with yourselves. x

OP posts:
tamum · 17/01/2006 17:58

I am so pleased macwoozy, I really am.

Heartmum2Jamie · 17/01/2006 18:56

That is brilliant news Macwoozy!! What a relief that must be for you!

Potty1 · 18/01/2006 08:46

Brill news macwoozy So pleased!

Piffle · 18/01/2006 09:13

Macwoozy that is such a relief now you cna go relax a little

Original poster
macwoozy · 18/01/2006 23:53

Thanks to you all

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Sallystrawberry · 19/01/2006 00:12

This reply has been deleted

Message withdrawn at poster's request.