Marfan's Syndrome & PSVT

[Kiwi1953]

hi all,

just curious if anyone else in this group has Marfan's along with their arrhythmia?  Because of the Marfan's, I'm more concerned about my heart being goofy than if I did not - the biggest worry for a Marfan's patient is that our aorta can spontaneously dissect - and when the SVT kicks in and the HR is up over 200 for several hours I wonder if that could be a problem?

thanks!

Sunny

[Darlingorla]

So it sounds pretty much as though your heart is okay, and you shouldn't worry .. try and get a heart x-ray for peace of mind.

[Kiwi1953]

yes, I have had echoes in the past - some 'odd' stuff but, after the - oh damn, I hate it when my mind goes blank! - the procedure where they send a little wire with a camera up into your heart? - found nothing scary. My GP is wanting me to get an x-ray annually  as he knows I can't afford the echo every year - just haven't got around to it yet.  Yes, hyperflexible, although that's modifying to some degree as I age! ;)

[Darlingorla]

To mum2four - I can only hope that things do eventually go in the right direction ...

To kiwi 1953, I guess that when you were given the dx of Marfan's, the Ghent criteria was used.  That would have involved checking out your heart because that, as you know, is the biggest concern for people w/marfan's - and  skeletal findings, although part of the major diagnostic criteria, are of lesser importance ...  I guess you must be hyperflexible?  I would have thought that at some point some doctor has checked out your heart, thru x-ray or echo cardiogram.

[mum2four]

I know what he's doing might not seem good but it's a start and thats what needs to happen. you know americans have been scared of a free health care systom for a long time now and the last person who tryed to get a free health care system threw was harrassed in to backing off.

while it's not perfect proberly not even close to perfect yet some time baby steps are a good way to get things in. You dont know what he's planing for in the future. He may be using this platform to get it in  and then ease in better changes later and slowly. Even if that not his plan I'm sure once people gain some confidance that change can happen the people will start to fight for whats right.

[Kiwi1953]

yes, I know most other first world nations have universal health care - and that might have been what the plan was here, originally, but it certainly isn't going to work out like that at all.  We'll all just have to see what the outcome is - with trepidation, for most of us!

As far as my Marfan's, because of the connective tissue issues I tend to break and sprain things a lot, that's the biggest problem.  Also herniate in odd places.  Yes, just monitoring would have been great, but that's not the way it works here - everything has to have a label, because the insurance companies really do run medical care.

[Darlingorla]

That's too bad about your health care.  I am Canadian and we have universal health care coverage, similar to the UK.  People don't fully understand the full implication of what Obama is doing - that it is not as wonderful as it sounds ...

Out of curiosity, if your heart is not involved what are your major Marfan's issues?  I would have thought that unless your heart was involved, an official diagnosis of the condition would only bring you grief financially, which is seems to have done.  Surely just monitoring of the affected health issues, without the diagnosis, would have been a better way to go?

[mum2four]

$400 a month wow thats a lot.

In australia you dont have a health check for private hospital cover insurance. I have extra's cover and thats cost me $120 a mth just for extra's for my family I cant afford private health which would double(at least) my monthly payment.

I'm glad we have medicare I dont have to have private health insurance

Only people with high incomes have to pay the medicare levy at tax time.

I wish more countries took care of there people better. It's just crazy.

[Kiwi1953]

thanks, Mum2four - I'm a native Kiwi (where med care was free) but have lived in the States for many years now.  We now have a new 'health care' plan here that's supposed to make everything more equitable for all, but actually most of us are a bit worried about it....what will actually happen is that in a very short time we are all REQUIRED to have insurance, which means we will have to pay for it.  If we don't, then we'll be dinged on our taxes every year - and, with a couple of 'prior conditions', I'm having difficulty finding any insurance company that's charging less than (a minimum of) over $400 a month. Even the 'cheapest' of them has a very high deductible (what one has to pay out of pocket every year before the coverage kicks in).   It's a bit of a quandary...if anything would get my heart rate up, worrying about being forced to pay this much certainly will! *grin*

[mum2four]

I'm so sorry to hear you have to pay for hospital. Everyone should be entitled to free health care in this day and age.

My thoughts are with you.

[Kiwi1953]

thanks for the input - getting the reassurance would be nice, but all medical tests do cost so much....still  paying off a couple of grand for this year's ER trips, so I'm trying to keep it down as much as possible!  The meds do seem to be helping the PSVT, will still get the odd thump and erratic behaviour every now and then, but it hasn't turned back into a full-fledged episode since I began taking them regularly.
As far as how long I've had them, I actually think they began either in late childhood or early teen years - I've had periods when the anxiety and/or panic attacks were really bad, but now knowing about the PSVT I think a lot of that was because my heart was going so fast.   I've read on here that many say people seem to get the PSVT because of their panic, but I think perhaps (at least, for some) that it's the other way around.    I found that my PSVT would start out of a clear sky - frequently when I was just sitting and talking to a friend (and not about anything that was stressful), or doing something else completely average and normal.
Anyway, to answer your question, I've had them for 40 or 50 years - it's only recently that I've actually found out what they are.

[Darlingorla]

Forgot to ask you how long you've had PSVT.  A few years ago my GP thought that I might have Marfan's because I have extra long arms , tall (5'91/2") and flexible.  However, she discounted it because my heart is structurally normal, as are my eyes, lungs etc.  In other words, apart from the long wingspan, I do not meet the criteria, hence I know a fair bit about the disorder...

[Darlingorla]

The best thing to do for reassurance is to get an echo done on your heart to make sure that everything is okay, valves etc., and to check for mitral valve prolapse.  I am surprised your GP has not done with already ... If your heart is structurally sound, then the PSVT or tachycardia episodes are considered to be benign, although for many of us that is very hard to comprehend when we end up in the ER regularly.

[Kiwi1953]

yes, have been diagnosed several years back w/Marfan's.  No aortic dissection, and no, not under care of a cardiologist, I'm one of those who doesn't have health insurance so try to limit my medical outlay as much as possible.  My GP was somewhat concerned about the Marfan's with the tachy, so I thought I'd check in with you all.

[Darlingorla]

I am assuming that you have been officially diagnosed with Marfan's?  Have you had any aortic dissection that is making you concerned.  I would assume that you are under the care of a cardiologist and therefore he/she an reassure you that being in tachycardia will not affect your aorta ...