peri partum cardiomyopathy LGJ member or anyone?

[linnee]

Noticed in the archived messages talk about cardiomyopathy. LGJ has the same as me. I developed this after the birth of my twins. I also have an irregulat heartbeat. Was wondering if you'd like to compare notes, or anyone else with the same problem.
Thanks

[PottyinaPearTree]

Bumping for you linnee.

[PottyinaPearTree]

Bumping..........

[misdee]

hi, you may have noticed about my dh, he has viral dcm.

wish you all the best.

[LadySherlockofLGJ]

Linnee

I am happy to answer any questions you may have, Noddyholder also has a heart condition.

Misdee

Is our resident expert on CM.


How long ago did you have your twins ??

[macwoozy]

Hi linee, I have hypertrophic cardiomyopathy, not due to pregnancy though. This caused an irregular heartbeat and I was given an implantable defibrillator back in July. Are you on any medicines to treat your irregular heartbeat?

[misdee]

i am not an expert, just unfortunatly my dh is further on with his conditon than most on here.

hoew are yu doing? any q's then throw them at us.

[butterflymum]

You may find this site of interest/help.

[misdee]

CMA is also good.

[Joanie]

Hello Linnee,
My dd has/had cardiomyopathy. Yes CMA useful. I find some of the info on the wbsite about the diff treatments a bit brief and - sometimes - unfortunately I have to say a bit over-optomistic. But join them and get their newsletter. I find that v informative as it has lots of stories in it of diff people's experiences, including unfortunatly, a surpsising no of people with pp cardio. Until I read this newsletter, I wan't v aware of how 'common' it is.

They have a useful list of contacts and local groups in the newsletter which may be useful as you can feel v isolated with this condidtion. Also i know they used to have a nurse/advisor you could ring up for help and advice.

Sorry to hear about your problem. Is there any chance it may get better with time? V unfair health problem isnt it and v hard on you just having twins too. Best of luck for the future.

[macwoozy]

In the news yesterday, a woman who suffered from peripartum cardiomyopathy was implanted with a Jarvik 2000 pump, (I'm guessing its a device fairly similar to Peters, although much smaller, this is only 2 inches long). She had severe cardiac failure so this device was keeping her alive until a donor could be found. Amazingly her heart actually started recovering with this device implanted and she now no longer needs a transplant. Amazing.

[misdee]

the jarvik is a small internal pump, they were hoping to use one on peter but he needed a much stronger device (the thoratec LVAD). the jarvik is a lot more portable, and more patients can go hme with the jarvik, and the battery packs are smaller. as it takes over the work of the heart it can mean the heart repairs itself. in june peters heart had increased in size, 4months after the LVAD the extra increase had subsisded, and his heart is working slightly better than before the LVAD was put in. As peters condition is further advanced than some, he will still need a transplant. there is one man on the unit whose heart is recovering and they are thinking of removing his vad.

[lucykate]

had a look at the two websites, they are quite interesting, not seen them before. i have a condition called paramoxil supraventricular tachycardia (or svt), was born with an extra nerve inside which kicks in now and again, top speed is about 200 bpm when it happens. luckily, it doesn't bother me much nowadays, otherwise i could have laser surgery to remove the nerve.

[macwoozy]

That's amazing Misdee that the heart function can be so improved by these devices that people are actually coming off the transplant list. I'm sorry though that this isn't the case for Peter, both of you are often in my thoughts and I just pray the day that he can eventually get his new heart.

lucykate, my arrythmia also got my heart rate up to over 200bpm, it's a frightening sensation isn't it? I have ventricular tachycardia, I think the difference is that SVT's originate in the top chambers of heart and V.T's originate in the bottom. Glad to hear you're not finding them troublesome

[linnee]

Thanks everyone for your messages, especially misdee. I've contacted one of the members on the CMA site.
Lucykate I also had the svt b 4 the twins birth and was going to have laser surgery until this happened. They weren't sure at the hosp whether it was this that caused the pp cm or this and the pregnancy as I was breathless all the way through the pregnancy.
I take ramipril and propranolol. Although consultant says I'm on the mend I worry so much that it will return and that is my main concern. Have been told that there's a 50% chance of recovery.
Best wishes to all of you and will hopefully find out more about your and yours conditions as we chat.

[linnee]

Forgot to mention that I had my twins 18 months ago.

[noddyholder]

I have HOCM and not sure how or why although I was ok til ds was born 11 yrs ago so who knows?Propanolol is very good for this condition although I can't take it Can I ask you if you took medication when you were pregnant?

[linnee]

Yes, I took Propranolol although I didn't want to. When I went for my IVF treatment I weaned myself off the above but when my palpitations became worse towards end of pregnancy my consultant advised me to go back on it.
I also took zolmitriptan during a couple of migraine attacks but don't suppose you mean that.
For what reason can't you take it?

[noddyholder]

For some reason propanolol made me very breathless and my legs were like jelly atenolol was the same bit bisoprolol is fine

[linnee]

Damn beta blockers - make you feel dead - no emotions. Wish I didn't have to take any med' at all, apart from frusemide - then I could perhaps lose a stone for Christmas!

[BoozyChristmacwoozy]

Hi Noddy

I know what you mean about not wanting to be on meds, but I consider myself lucky because I don't seem to suffer from any side effects to beta blockers, although Amiodarone has caused me a few problems. What really annoys me though is that I wrongly assumed I could stop taking it all once I got my ICD fitted, but no such luck.

Linnee, have you found you've gained weight then since being on your medication?

[noddyholder]

My consultant wouldn't put me on amiodarone because he said I was too young to live with the side effects and so we tried everything else until things settled What are the side effects?He told me it was more suitable for older people I am on disopyramide it is a wonder drug for me anyway

[BoozyChristmacwoozy]

I was put on amiodarone when I was 26, 10 years later and I'm still taking it, not good. The side effects are numerous, and even can be fatal but that is a rare complication, thank god. It can cause lung fibrosis, kidney, liver, eye problems, skin sensitivity with discolouration to name but a few. In my case its affected my thyroid, it caused a goitre and for a while it became over active, so that has to be closely watched. I also have sensitivity to bright lights now, I don't like driving at night because the bright headlights can really affect my sight. My cardiologist said I shouldn't be on amiodarone now because of my thyroid, but when I had the ICD fitted I was told I would have to carry on with it. TBH I've been a bit naughty and have reduced the dosage, I would be the first to advise anyone that this is not a good idea, but it just doesn't make sense that I'm taking an anti arrythmic drug, even though I have a defib that would stop any arrythmia anyway. It sounds like you're on the right medication. How old were you when they advised against it?

[noddyholder]

I was 37 and I am 40 now so older than you.I know it causes skin problems but all the other things too make it seem awful for you.I would have thought with a defib you would be off drugs Can you go back and discuss weaning yourself off altogether Do you still have episodes or does the device pre empt them completely|?

[BoozyChristmacwoozy]

I do still have episodes, but they've not been severe enough to give me a shock just yet. I've got a defib check on Thurday, so I'll find out more about any episodes I've had in past 3 months. But since I've had the defib implanted since July, I've been too laid back about it all, I hadn't made an appt to see my cardiologist, and now the earliest appt date is in Feb, I'm kicking myself that I've not made an appt sooner to discuss this. You're right, it just doesn't make any sense that I should still be on these drugs. The only factor that I could think of is that amiodarone can affect the strength of the shock needed to restart my heart in case the defib did go off. Excuse the very laymans terms here But like you say I don't see why I can't wean myself off them slowly.

How have you been lately?

[noddyholder]

I have been fine recently I really tailor my life to suit my heart iykwim which is fine until I have to do something unexpected and then I'm aware of how my heart isn't as good as it should be.I have found that drinking lots of water really helps me and so I am trying to do that.Still dizzy and knackered though but I think that is here to stay as I have never really got rid of it.