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Topic: Hello (Read 1494 times)
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Matt Erlanger
Hero Member
Posts: 2027
I've Got Wind.
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Re: Hello
« Reply #1 on: January 07, 2010, 03:40:36 pm » |
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That does sound like an unusual one - I know nothing about it myself.
Welcome to the board though. I hope you find some answers here.
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Matt, Stratford-upon-Avon DoB Oct '63 HCM; ICD Oct '04; Verapamil Tenor Sax (improving) Amateur Dramatics www.kads.org.uk (show-off) Tai Chi (lapsed beginner) |
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Fran
Guest
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Re: Hello
« Reply #3 on: January 21, 2010, 01:01:30 pm » |
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Hi Killashandra,
sorry to hear of your losses, and I hope you are feeling ok on your new meds.
My husband recently found out he had LVNC following an MRI. He was initially diagnosed with DCM last year aged 30. I think the way it has happened for him is that the LVNC has caused his DCM.
It appears to be a family thing for us too, as my daughter who is two and a half was diagnosed with DCM just over a year ago, and my husband's heart issues were discovered after we went for screening 'to be on the safe side' as they were sure her DCM was from a virus or something! My husband's eldest sister also found she had DCM after screening and she is due an MRI soon to check for LVNC.
My daughter has had many echos at our local hospital since her dx plus a really thorough one at Great Ormond Street Hospital when we went to see transplant consultant and they could not find any evidence of NC.
At the moment (touch wood!) husband and daughter are both doing okay on their meds, my husband is more or less assymptomatic with an EF between 30-40%. His consultant is sending his latest echo and ECG reports off to someone else to check to see if he would be suitable for an ICD or pacemaker. My daughter has suffered quite a bit with symptoms over this last year and her EF took a dip at the end of last yr which led to us being seen by GOSH - but at her last measurement in December her FS was up to about 15%, which is more than double what it was when she was dx so we are really pleased about that. I am hoping to see a nice stable reading (or increase!) next month, but regardless of the numbers, she has been really well in herself this last week or two.
It's really good to see a LVNC forum up here, there is not a lot of stuff out there about this, so would be interesting to hear other people's experiences.
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winston53660
Newbie
Posts: 1
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Re: Hello
« Reply #5 on: March 30, 2010, 07:47:17 pm » |
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Well I have LVNC as well and know vewry little about it. Looks like we are all in the same boat.
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Max200g
Newbie
Posts: 7
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Re: Hello
« Reply #7 on: May 21, 2010, 06:45:26 am » |
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Hi I got diagnosed in 1993 with DCM and also in 1994 with LVNC I was told by Professor Mckenna on a one on one meeting with him at St. Georges Hospital London, that I was only the 6th person in the country to be diagnosed at that time with LVNC.
I became for better words a bit of a guinea pig with numerous tests carried out on me. The thing is back then hardly any doctors new about this condition, and when you mentioned it to them that you suffered from this condition, it was quite funny because I had to explain to them what exactly it was as they had never heard about it.
I had my latest appointment last Monday at the Heart Hospital London and things have deteriorate quite alot in the last year. I have been in fulltime employment but I am now seriously thinking of going part time as severe fatigue and leg pains have set set in in the last few months. So its about time I started to put me first for a change lol, I hope to try and claim some sort of benefit to help towards the money I will loose by changing jobs, Has anyone got some advice on what to claim for and how to go about claiming for it?
Thanks
Max
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dexcel
Newbie
Posts: 34
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Re: Hello
« Reply #8 on: July 22, 2010, 04:15:46 pm » |
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Hi all, another LVNC person here.
this is what i wrote three years ago on the board
Hi All
Thought i'd introduce my self, I'm phil
found out i had a non-compaction Cardiomyopathy last year in sept after going for some routine medicals. Only got the complete diagnosis because the company was paying for it and i thought i would follow through and get all the tests to find out what the slight "murmur" people had been able to hear. Turned out to be a pretty good case of non-compaction, DCM and some mitrial valve regurgitation and an EF around 35-40%. So that suitably freaked me out. (however after seeing some of the profiles here and another group on facebook and seeing what people have, i realise i'm quite lucky and healthy)
Like i think a lot of people who find out about this later on in life, i was quite surprised as i had spent the entire summer mountain biking, hiking and canoeing in the Canadian Rockies with out to many issues other than just generally being out of shape. Needless to say that all stopped for a while, to allow the docs to get a handle on everything. I think i have been quite lucky as the Cardiologist i had out in Canada was very positive about it all and after two months got me installed into a fitness program designed esp for people with cardiac issues which was great as i was quite depressed about the lack of activity in my life. He's got me on beta-blockers and ACE inhibitors and has ruleld out any sort of surgey for the time being, as i was showing postive resutls after a couple fo months on the meds.
Since then i'm back runnign/moutnain biking 3 times a week which has been great, i just now take things a little bit easier and always try and stay with in my target heart rate. In march i had another check up and the medication had improved things a lot and the mitrial valve regurgitation was much reduced and the non-compaction was much harder to see on the echo. So i've been told to hang steady with the meds and get checked up once a year.
I was curious to hear what sort of reactions people have had with the beta-blockers, on Carvedilol, 6.25mg twice a day. i took me a couple of weeks to get used to them and don't feel tired nearly as much as i used to when i first went on them but i did have quite sevre sharp pains in my head for a little while and i noticed i twitch a lot more and feel like i am trembling when i can see i am not. Either that or i'm jsut letting my imgination get away with myself
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anyways i'd say three years later nothing much has changed except moving back to the uk means i drink more beer and a result my waistline has expanded since the canada days. I have been having yearly check ups with my cardologist and touch wood so far so good. the heart is still tickign away and they are finding ti harder and harder to see the non compaction part of the heart muscle. Since then it has also turned out my uncle has it and his was also discovered on a routine medical. he is ticking along fine and still flying as a pilot. I think this talls in with what my canadian cardiologist said that this condition is going to become more and mroe common as they improve the screening machine and doctors know what to look for.
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26yr Male, non-compaction cardiomyopathy, EF 35-40% ish, 6.25 Carvideoil and 10mg Enanpril 2x daily
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