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Heart conditions blog

People with heart disease and other heart conditions discuss their symptoms, treatment and other issues with the aim of helping others deal with their heart condition.
  • We just think that HEART ATTACKS and CORONARY HEART DISEASE are events or illnesses that other people get, we never think that it could be us next. But it CAN be YOU.

    I was 36yrs of age when I had my 1st Heart Attack, I did not have a clue that it was going to happen, no symptoms whatsoever. Just out of the blue. SO BEWARE. Think about that cigarette, the drink, the chocolate, the pies, you name it, you have to think what you are doing to your body. I was just as unaware. I had been smoking, drinking all of the above, and it does not mean you have to be in your 50 plus age group, it can hit you at any age, young or old.

    I have had a total, so far, of 4 heart attacks now, and i am still here, largely thanks to the doctors, nurses, ambulance crews, etc, it is unbelievable the amount of people are required to actually save your life, and care for you after the event, it does not just stop at a&e or discharge from hospital. it continues for the rest of your life. You have to take care of yourself too, not just let the medical professionals do it for you, otherwise you will struggle back to normality. This kind of event is life changing, it will always be there, in your mind, etc but, you must not let the illness take over you, YOU must control it.

    I will leave it there for today, and let anyone who reads this, ponder their thoughts, and hopefully will get some kind of inkling on how, 14 years after the initial event, i can still remember it so vividly.

    Thank you for reading


  • Heart attack: real story

    by Caspar on 12 May 2009
    Mike Smith has had three heart attacks, the first around 15 years ago. As he nears 60 and enjoys life to the full, he explains how the attacks affected him and how his recovery was different for each of them.

  • FH stands for inherited high cholesterol and in laymans terms it is the bad cholesterol or LDL we have very high. Untreated it usually leads to premature heart disease and heart attacks (myocardial infarcts). Treated with a combination of healthy lifestyle chioces, medication is nearly always needed and usually this is done by using a cholesterol lowering drug. The one that suits you best and gets the LDL down as low as it can go. Unfortunatly for me even with these measures it was not enough because i developed the condition from both parents and i have been undergoing LDL apheresis a type of dialysis to try and stop my heart disease from killing me. If i had been diagnosed earlier then my chances of leading a life free from heart disease would have been better.


  • Hi

    My name is Dawn i am 45 years old, i have three grown up daughters and have a lovely husband called Neil. I was dignosed as having FH at 22 years old following the diagnosis of my mum with the condition. My sister was also found to have this as well. We had levels of cholesterol levels between 10 and 19mmols. On screening our extended family many were found to have this and many of our family had died before they reached 46 years without ever knowing.  

    As this is my first blog i want to ensure i don't bore you if you would like to know more please respond.


  • Getting fitter

    by User9807 on 09 August 2008

    Well, the diet seems to be going OK.  I haven't weighed myself as I find it depressing to see that I've only lost so much in a certain amount of time.  I prefer to judge how much I've lost by how slack the waist of my trousers have become and I have to say that they're getting looser!   I've been building up my walking distance and speed the past few weeks and this morning me and the dog hoofed it over the Army Training Area near to my home.  We did just over 3 miles including a good bit of cross country and hill work, inside an hour.  The breathing was fine throughout and I most certainly broke sweat, but I was quite chuffed with the progress.   I'll be 47 at the end of this month and I'd like to see a measureable difference in my waist size by then.  It can only be good for me.  I'm back to Uni in late September and the aim is to lose enough weight by then to fit back into some of the mountain of clothes which I have collected over the past few years and which I refuse to let my wife throw out.  I'm confident that I'll get there.

    I've an appointment with my Cardiologist later this month so we'll see how that pans out.  I'm hoping that he'll agree to me being able to take up martial arts.  Seriously!  I've been taking my eldest daughter to a school just on the edge of Catterick where they run a variety of classes, including those for kids.  She's really taken to it and I have to say that the Instructors are absolutely brilliant with the kids.  She's always been the shyer of my two, and her confidence is slowly growing.   They allow the parents to watch which is fun and I have to say that I do actually fancy taking it up myself.  I'll have to see what the cardiologist says first but I'm not planning on joining until I have lost enough weight not to look like a fat bloke in pyjama's, so that'll be towards the end of the year.  I'll have a chat with the Instructors nearer the time as there may be an insurance issue.  We'll see.   What I'd like to do next year, is walk the Great North Run.   I'd really like to run it, but that's out of the question.   I'm not sure if anyone who actually has DCM has done this before, but if so would you be interested in doing it again?   Or would any of the supporters be interested in coming round with me?  I would mean starting off very early in the morning well ahead of the main event, and also getting the OK from the event organisers and cardiologist, but I'm game for it.  If anyone can advise, I'd be grateful.   

    Anyway, I'm off back to the decorating.  We've finished one bathroom and we've nearly finished the hall.   The kitchen needs a touch up and hopefully itt'll all be done by Monday morning, as next week I've really got to get a start on my dissertation research.

    All the Best!



  • Dilated cardiomyopathy

    by User9801 on 27 July 2008

    Well its been a while since my last post so i guess i have got a lot to tell you,can i just say before i start welcome to all the new user's and i hope your all doing well.

    My daughter katie has has a heart transplant as you will know if you have read my blogs or website well she has to go and have more surgery because something in her heart is to tight and they have to put a balloon in there to stretch it,so we are very worried about that being done.

    We are still waiting for our other twin lauren to start on medication for the starts of dilated cardiomyopathy,she is doing ok dont seem to be having any problems with her at the moment,but she needs to start these meds so her heart doe's not go any worse.

    Simon my partner who cares for me and the girls has had surgery the other day on his ears,so i have had to push myself to the limits its the worst thing in the world feeling tierd and in pain and no one there to help you so you have to make your self do these things and then your in bed for days because you feel like you have had ten rounds in boxing and the pains in my chest and lungs are terrible,so i will be glad when simon feels better.

    I have not been on here for ages because i have had lots to do with the website i run  we have a forum on there and its not as busy as i would like it to be but its doing ok.

    With my heart failure its just a case of waiting to see a doctor now for a transplant assesment not looking forward to that but i have to know whats going on and how long i have with this heart now.

    Anyway its getting late now but i will write again soon and thanks casper for asking about me and hello sheran and jaine hope your all ok.

    Best wishes

    Louise williams x 

  • The story so far.....

    by User9807 on 24 July 2008

    Well, hi everyone, it's been couple of weeks since I last posted.  Same for yourselves by the looks of things.  So, what's happened since the last post.  Well, after the long wait, my results came through and I passed all of my law exams, so I'll be going back in for my final year in September.  I didn't do too shabbily I have to say, so I'm quite chuffed with myself.   I'm now about to start my research for my dissertation whilst a have a few free weeks on my hands.  On the family front, the kids are fine, busy taking the house to pieces, but fine.  So far, they've knackered the front door lock, forced the bannister of the wall by sliding down it, pulled the toilet roll holder out of the wall in the downstairs loo and only the day before yesterday did I find them trying to remove a brick from the middle of the garage wall.  So, as you can guess, the blood pressure has been somewhat higher than recommended.   Kids?  Sometimes I feel that we should have stuck to dogs.  We're actually looking for another dog to keep our Springer Spaniel 'Rosy' company.   I quite like Jack Russell's but have been looking at rescue Springers.  Shame that the Rescue centres never answer your e-mails.  Maybe they don't really want to part with their dogs? I sometimes wonder why they advertise in the first place? 

    The ticker has been OK so far.  Experienced a little pain last night, but I put that down to being a bit vocal with the kids the other day when I caught them trying to demolish the garage.   I get a sort of dull pain down the left side of my chest just every now and then, which disappears after a nights sleep or a rest.  It's not something I worry about as I've mentioned it to the cardiologist who is happy that nothing is wrong (apart from the obvious).   I actually missed my cardiologist's appointment in May as it landed on the same day as one of my exams.  I'll have to get round to making another appointment, but to be honest, I feel fine.   The diet is slow but I've started walking the dog for considerabe distances again a couple of times a week, so there's a start in the right direction.   My breathing is a bit heavy on the upward side of the hills, but I put that down to being well out of condiction and over weight.  I've been here before and once the weight comes down, the cardio-vascular improves. 

    Well, the kid's school has broken up for summer and as my wife only works term time at the nursery and I don't go back to Uni until the back end of September, the whole family are at home together for the summer.  This willl be the first time that has ever happened.  So, lots of DIY to be done, a car to be sold, and activities to be found for the girls.  The eldest will be starting at a local Martial Arts club this Friday and she's just got herself a new skateboard yesterday, so I forsee several bruises and minor injuries taking up a bit of our time.  She's started to get that 'beach-bum skater kid' look...and matching attitude.  The youngest is..... well she's just too busy being gorgeous. 

    For her 9th birthday next month, the eldest wants to spend a few days in London, so, we're trying to get that arranged, which is murder, but we will get there (although looking at affordable hotel availability, that may not be until September!).   She's into art, music and history, which we encourage and the more she see's and experiences when she's at this age, then hopefully the more influence it will have upon her future life.  When I was her age, we had bugger all.  We were lucky if we had a day trip to Broughty Ferry beach!    Eeeee when ah' were a lad, etc, etc, etc.  I think I'll wake them all up very early on Sunday morning and pack them all into the car and head of to Redcar Beach with the dog!   I do like Redcar, I've no idea why, as it's not exactly Cannes.  I like to look out to the North Sea for some obscure reason.  Must be the Viking in me longing for home.   I've actually done a little tracing of the family roots as the surname is obviously Scandanavian and we hail from Sweden.  That threw up some pleasant surprises.  No famous relatives though,  Well, none who's wills I could contest, although, some of our ancestors were Royalists who owned land in what is now North Yorkshire and who Cromwell robbed and chased up to the Lowlands of Scotland.  Well Mr Cromwell, some of us have come back.  I think that I'll wage a bit of war on the local farmer.  He looks like a roundhead.  Then again, maybe it's just the crash helmet that he wears when he's on his quad bike.  There's a family association up and running and there's an annual shindig in Sweden, which I'm afraid looking at the group photo's looks more like a wake. Maybe's best we avoid it.  We'd probably end up being arrested for laughing in a public place between the hours of 6 and midnight.  Either that or the kids would get lifted for wrecking someone's house.

     Seeya later!

  • Living with DCM

    by Griff-the-Tiff on 11 July 2008

    Yes, I've finally cracked the blog! I needed some help from Caspar but finally I've made it.

    I'm a 61 year old grandfather with 3 adult children and 2 grandchildren. So far I'm the only one in my family to have DCM but, as I've never smoked or drunk alcohol to excess, the cause has to be genetic, especially as my father died of it when he was 53. He was a Master Builder and was moving concrete paving slabs when it struck but then in 1949 even the doctors didn't know much about Cardiomyopathy.

    I was diagnosed in February, 2000. At that time I was cycling to work each day which entailed riding up a hill every evening on my way home. By the time I arrived my chest was really painful. Obviously totally out of condition but, being a man, I ignored it for at least 3 years. Then I started to wake up at night, take a couple of deep breaths and go back to sleep. I finally admitted something wasn't right and trotted off to my GP. Next thing I knew I was in hospital with the echocardiogram technician commenting,'It's the biggest heart I've ever seen!' Not much patient care there then, although accurate and honest.

    We started on the medication trail. My main problem was that every time the dose was raised my blood pressure went through the floor and took about a week to stabilise. My consultant quickly appreciated that I needed a bi-ventricular pacemaker fitted but, when they came to fit it at Papworth Hospital, they were unable to connect the third wire for physiological reasons (quite a common occurrence, it seems) so I ended up with a standard pacemaker for a couple of years.

    In 2004, believing that my life would soon end, I planned and executed a driving holiday in the USA; my sister and I drove Route 66 from LA to Groom in Texas and back again, via Santa Fe. Then in 2006 I took 3 weeks off work and drove right across the States, starting in Newark (just West of New York), up to Chicago via Indiannapolis and then the full length of 66 to LA but via Dallas this time. It was more of a spur really South from Oklahoma and then back to Oklahoma. Next year I'm planning on doing it all again but this time with my 21 year old son. It was in 2004 that I chucked the Furosemide pill. After all I didn't want to spend half my time looking for a toilet! I've managed to stay off them ever since.

    When the leads technology finally caught up, I had the third wire fitted in February, 2006 (everything seems to happen in February for me as far as DCM is concerned!). The difference was phenominal! From being very breathless climbing 1 flight of stairs I suddenly found I could climb 3 flights straight off and be only mildly breathless at the top. I was able to dispense with my gardener's services (called in for 1 hour a month to mow the lawn and keep the weeds down because I couldn't) and enjoy gardening again. At the moment I'm in the process of laying concrete footings to build a garden wall during my 2 weeks holiday in August.

    Just by way of a postscript, I'm a Key Contact for the Cardiomyopathy Association for the East Anglia region and from my experience of talking to newly diagnosed patients, a major problem is the lack of information and support being supplied by consultants in particular and hospitals in general. They don't seem to take the time to explain to patients what has happened, is happening and what is likely to happen to patient's. The old idea of 'I'm a doctor so you do as I say and everything will be fine' still seems to be very prevalent. We're left to find out for ourselves so I heartily endorse the 'Leave the Search Engine Alone' advice. The heart is a very complicated piece of kit and cardiomyopathy is different for everyone. Don't believe the statistics. Technology and drugs are moving forward at a terrific pace. Remember, you are one up on people who have not been diagnosed with DCM. Your heart is being monitored. You know what condition your heart is in!


    by Vernon Moyse on 29 June 2008
    I have heart failure caused by severe left ventricular dysfunction. I also have atrial fibrillation. I am about to be "cardioverted" with an electric shock to try and re-establish a normal heart rhythm. As I do not feel particularly unwell... I am wondering if this is a good idea. What does anyone think?
  • pol's 2nd blog

    by pol on 26 June 2008

    Hi to all - I went to see the specialist a few weeks ago I was experiencing a sharp pain in my chest, he said sometimes when the heart gets bigger as in hocum it can push onto the eosophagus, which could explain the pain, he is sending me for a barium swallow to see if this is the case. its been 3 weeks and i have heard nothing about an appointment yet - is it me or does anyone else think that i should have heard something by now?

    Anyway i have just got back from a short break in york - it was nice to get away for a change. we have a campervan and parked on a site at naburn lock, i normally follow in the car so we have transport to get around, however this time we decided to use public transport .... the bus stop is just outside the site so it wasnt far to walk - around 15 people got on the bus and i was the only one who actually paid for the ride everyone else had a bus pass...! it was only15 mins to york and it was quite a pleasant journey, bearing in mind it must be about 25 years since i have been on a bus..! the first stop was the national railway museum which normally isnt my cup of tea but it was free so i thought i would give it a go. wow it was facinating! so much to see and do. after 2 hours i was absolutely knackered and had to catch the bus back to the site for an afternoon of rest. the second day was the same, we got off the bus to have a look round the merchants house, it was fantastic, but again after a few hours i was shattered and headed back to the site. at one time i could have run round york several times and not been out of puff! i dont know if its my age or my condition (maybe a bit of both) that makes me so tired, but i do know one thing and that is i dont like it....!!



  • Hi,there

    Im sorry i have not wrote for a few days the computer has been playing up and my partner has just fixed it for me.This week has been very busy we have been up to saint mary's hospital to the genetics department,they have found the gene in my family thats cause's the heart conditions,they told me that our gene could cause 2 types of myopathy and it was 50/50 which one we got,which was a complete shock really they said they can test other family members on my dads side by taking blood now and they can tell them if they carry the gene.

    They advised me about having more children and its too risky to do,we are happy with what we have anyway but more would of been nice i love children and so does simon.They are going to get thing moving for me in the sense of seeing a doctor about having a transplant assesment,we will see how thats goes time will tell really.Katie had her scan this week and they said she needs to have a balloon fitted in her heart and they will try to do it at the same time as the biopsy to save her going though surgery twice,we was in shock and never thought she would need such a thing she has been through enough in her short life having the transplant and being in hospital for a long time.

    The twins have got a cold at the moment and i hope they can handle this one because everytime they get ill they have to go to hospital and i hate that,they have caught knits from some of the kids in this area that play with them and i cannot seem to get rid of them i have tried everything on the market at a great cost but i dont care because if there is one thing i hate thats knits.

    Anyway katie needs a tube feed so i will write again soon hope your all well.

    Louise williams x


  • I know it's only a few days, but there's less than a dozen of us in here, and I know for a fact that there's more than us who have heart conditions.  Either that or smoking, drinking, eating high fat diets and watching Jeremy Kyle really is good for you and we've been lied to!

    Apologies for not responding to any of your comments on my blog entry.  Frankly, I'm too bloody lazy, but thanks for the comments and please consider this as my response and also an update blog entry.  I wasn't really sure what to write for a second entry.  Should I write about my DCM?  Well, no not really.  I've already told you what the state of play is with me, so mayne better to give you an insight into my life and what makes me tick (pardon the pun).   

    OK, what's first......the diet?  weh, heh!.....guess what?....I've lost bugger all so far, but that's probably got more to do with the fact that I also have problems with my feet.  Can't keep them out of the kitchen!  I'm starting the diet on Monday, honestly.   I have to start things on Mondays.   Don't know why, just do.  Starting things on Tuesday's just doesn't seem right.  My problem is that I'm just bored out of my skull at the moment and can't seem to generate the motivation.   I don't start back at Uni until the back end of September which means that I haven't really got a lot to do right now, apart from the school run, walking the dog and the ironing, so I'm forever snacking and drinking coffee.  None of your nancy boy Nescafe either...I'm talking about the proper gear.  I've turned into a bit of a closet thrill seeker since being diagosed.  I'm right up there with the 'strength 5' caffeine addicts!   Honestly, there's times where I've drank so much of the stuff it's caused palpitations.  I've really let myself this past 6 months or so, honestly.   I've got a beer belly....and I haven't had a drink since 2002!   Now that's just plain wrong, not to mention grossly unfair.   My eldest reckons that I'm getting close to Homer Simpson size stature, so I can feel the incentive to get out walking again just creeping up on me.  If I turn yellow though, I'll know I've left it a bit long.  It's either that or my kidneys have packed in as well.

    Did anyone in the North East see the local news last night (19 Jun 08) about the two DCM sufferers who recently underwent transplants?  That sounds like the opening line of a joke doesn't it?  "Two DCM suffererers walk into a pub....."   Joking aside, it was a very nice story.   Which reminds me that I keep promising myself that I'll pop into the Hospital at Darlington as they have a monthly Cardiomyopathy meeting there.   Just another one of those things I'll get round to one day.   Bit like the ironing, which is just sat looking at me.   My wife will be back from work about 2.30.   I feel a bout of 'dodgy ticker' coming on.

    I've spent the past two days running back and forward to IKEA up at Newcastle.  'We' (the wife) have decided that the garage needs 'shelving out' as it's a tip and needs sorting.  It is a tip.  It's never seen a car.  We use it as some place to store stuff.  Well, the 'stuff' is now about 6ft deep and needs sorting out.  I've also done a few runs to the skip.     'We' will have the garage sorted by Saturday lunchtime, after which I am under strict orders to fix my 7 yr old's bike as she now wants to try riding it without stabilizers.  She hasn't looked at the bike since XMas, now she want's to get out and about.  So, Sunday will see us over the Army Training Area to some of the quieter, safer roads where we can 'fall off a few times' out of the public gaze.  I found my own mountain bike in the back of the garage, so I'll pop two new tyres on it and start using it next week.   The roads round here are a bit dangerous for kids.  It's a great place to live and the Dales are just up the road, but under the misconception that country roads are always empty, people just drive to fast.  We've had a few fatalities. You have to drive so defensively nowadays.  You need eyes in the back of your head.  Tesco's in Catterick Garrison is like a race rack on some days.  Nobody does anything about it either.  I've lost count how many times I've come close to being mown down when I have been walking over the pedestrian crossing at the front of the store.  It's not DCM which will see me's gonna be some spotty little Herbert in his mum's Clio.  Do you have them round your way?  I've never understood what makes them think that driving a 'G' Reg Renault Clio (which has a bean can for an exhaust), at 40 mph in a superstore carpark, whilst drumming their grubby nicotene stained mits on the roof, in time with the noise which they insist we should all hear, is cool?   And that's just the females.  And the way they talk.  Round here they have this strange combination of broad Yorkshire mixed with Ali G.  For a good example of what I mean, try to imagine Ali G talking like Zak Dingle or the other way round.   Most of them look like Sam Dingle, and I haven't even started on the blokes yet.

    Anyway, look forward to reading your entries. 

    See you all later!




  • The Joys of Heart Failure

    by User9800 on 18 June 2008

    I thought I would write a post about the ups and downs of this wonderful condition and see if it rings any bells with others, This weekend I went away for a few days on a girly holiday. It was only a mini cruise to Holland and Gurnesy but as you know girls like retail therapy and in my case it helps!

    The weekend was good up in the mornings having breakfast popping all my tablets as usual, dressed in smart but casual clothes my normal size 16 well it is the morning , Then the water tablets start to take effect great I am on a ship and where are the toilets miles away from where we are sat..... so I am walking around thinking I hope I dont cough or laugh(ok girls do you know where I am coming from) after 10 mins I find a toilet great I happily go in do the deed and walk out only to find yes I had used the mens. 

    We then leave the boat to go into Rotterdam we wait 20 mins for the shuttle bus you can guess Good old tablets I need the loo again, We pulled up by what looked like a civic building great they should have a toilet.. then the fun begins I dont speak Dutch and the guard on the door does not speak English so I then try mime cross my legs dance a bit trying to make this large burly security man understand I would like to use the toilet no joy, It turns out I am trying to gain access to the state building of the Dutch Embassy(whoops)...But no panic I have spotted a Mcdonalds over the road. Now have you ever seen a tubby English woman doing a mad dash across a main highway trying not to have an accident in many ways.  Mcdonalds was great  did what I had to a resited the temptation to grab a big mac.

    We returned to the Boat late afternoon to relax then get ready for the Captains party. I had brought a great black dress with me I have worn many times and guess what I had somehow through out the day gained some excess fluid I was no longer the size 16 . Now lucky for me my friend who was with me is a size 18 so I then swop my dress for hers but it was far to big so a moment of insperation I will borrow her Trinny and susanana body suit...... 10 mins later of squishing  and tugging I am in my dress with all wobbly bits tucked well in.

    As my friend is a heart failure nurse she suggested maybe I should increase my water tablets as I was feeling really uncomfortable so me being me took a couple and went off to dinner all was well until you can guess the tablets kicked in now lucky I had already worked out where the nearest ladies toilet was great a few minutes walk away so merrily off I went what I had forgot is I had the scaffolding from hell holding it all in 20 mins later I am back at the dinning table Hot and flustered.

    Can I just say ladies if you ever need a toliet abroad in a hurry I can reccomend McDonalds.

    I thought I would write this as It shows you can have a life with cardiomyopathy even if it may be eventful! 

  • Hi my name is Michelle,

    This is my first post and it only took me 15 mins to find out how to do it. My knowledge of computers isn't wonderful!

    But here I am at last.....

    I was 25 and pregnant with my daughter in 98, from the beginning of my pregnancy I was ill. It was a terrible time and I didnt enjoy most of it which is quite sad. From 7 months onwards I could barely walk and I could no longer lay down because I felt I was going to die because I couldn't breath, countless times I went to the doctors and told them I felt like I was dying and was always told I was just pregnant and overweight. I also had a gurgling in my throat like that candy you put in your mouth that pops, it became my party piece for a while.

    Anyway I managed to struggle on and the day before my due date I was so ill that I went to the docs and she told me to go into hospital as I was probably in labour. I spent the most horrendous night in hospital and the next morning I was throwing up green sick. On their rounds the doctor came in and thats where the nightmare began.

    I was taken for an echo and it showed that I was close to death, although I didnt find this out till a couple of weeks later. I had a cathether fitted and then I was rushed to a a different hospital with a police escort no less, where about 12 people started working on me. I had drips everywhere and doctors and nurses doing tests and rushing here and there. The same question was asked over and over, have you ever taken drugs? I didnt understand why and to be honest I was so ill I didnt really care. After about 4 hours they managed to stabilise me and said they would be back in the morning to give me a c section. They also told me that they were going to put me to sleep to rest my heart and not to be suprised if I woke up and it was a week later. About an hour after the doctors had all gone home I started in labour and by the time they had all got back to the hospital I was 7 cm dilated. What a commotion it was, I had docs everywhere and also I was in Northern Ireland at the time as my hubby was in the army and the hospital I had been moved to was just off the Falls road so I had been assigned 2 plain clothed policemen who had to make them selves discreet even from the doctors but it was a farse as everyone knew who they were. But looking back it was funny.

    In the room with me was my hubby and 18 doctors and nurses and it still didnt really dawn on me that I was that ill, my hubby on the other hand had been told that I would probably need a new heart and that I was mins from death, so I imagine it was much more scarey for him.

    While a central line was being fit I was in agony and the midwifes told the doc to get a move on or the baby would come out and apparently they lost me twice so I am very grateful for all they did in there. I was woken up 18 hours after Hannah was born in intensive care and I saw Hannah about 24 hours after she was born and for all the pain and struggle seeing Hannah smile erased it all from my mind. She was so beautiful. Hannah went home after 4 days but I was still very ill and ended up staying in hospital for 6 weeks which was torture towards the end when I was feeling better. I lost almost 4 stone  in weight while in there. Before I had Hannah it was like every part of my body was bursting and you could touch anywhere on my body including my nose and the impression stayed there for ages.

     When I came out of hospital it was extremly hard and  the fatigue was unbelievable but slowly I got a little better and after 2 years I felt lot better, my ef had gone up from 12% to 33% so I felt alot better although the tiredness was still a big bug bear.

    My hubby left me when my daughter was 2 and a half and I think the stress and emotional upset made my heart break, and I got worse. I was living  back in the North east by then and had family and friends around me for support which helped. The doctors at the Freemans hospital suggested a bi ventricular pacemaker but wasnt too sure how it would help as it was still very much a trial. I decided to give it a go as the next step was a heart transplant. I had the device implanted in October 2002 and then had alot of my meds taken away and the Lisinopril and Carvedilol increased. I have to say I never really noticed an improvement but when I moved down south to live with my now 2nd hubby and went to see my doctor in London I almost fell off the chair when he said that I was loads better and that my heart was almost back to normal and that my ef was now 50%. He said it was a small miracle and my hubby likes to think that he was the main contributer in mending my broken heart! (I think he definately helped). Anyway, 2008 still struggling with my weight but my bad days that were almost everyday are now at most once a month and by bad I mean, fatigue, wipe out! I almost feel normal and I dont worry half as much as I used to. My doctors have decided to keep me on my meds and keep the pacemaker because they have had cases where they stopped them and the condition came back, so they dont think its worth the risk and neither do I.

    I am happily married again and my daughter Hannah is 9 already, I still cant quite believe the journey I have been on but I am still here and feeling loads better in health and mind.

    Sorry I babbled but feel free to ask me anything, I wish you all well.

    Michelle x

  • First post...

    by User9807 on 16 June 2008

    Well, where do we start.  Dilated Cardiomyopathy (have I even spelt it correctly?).  I've got one of them!!!  When I was first diagnosed, I didn't have a clue what it was all about but I knew that it wasn't good. I expected the worst, prepared myself very quickly for it and waited.....and waited.....and waited.  Well, I didn't pop my clogs (which didn't unduly upset me) and after 4 and a half days on the Friarage Hospital Cardio Unit at Northallerton...they let me out.  Beyond being given an appointment to go back to see the Cardiologist the next week and a prescription covering drugs whose names I could hardly pronounce, nobody told me anything, so I thought it best to take the following week off work and put my feet up.  That was in January 2003.

    I first started to feel unwell when I was a soldier serving in Kabul towards the end of 2002.  I had developed what was termed locally by the Brits as the 'Kabul Cough', which the vast majority of us had a one time or the other.  My cough however didn't go away and I brought it back home with me to the UK at the end of my tour.  A few weeks after, I was still coughing and on one occasion, I felt dreadful and as if there was a fluid running over my chest.  I went to see my GP at the Catterick Garrison Medical Centre, a retired Royal Army Medical Corps Brigadier called Mark Conroy (I hope he doesn't mind me naming him), who was very quick off the mark, was very accurate in his diagnosis and had me up in The Friarage Hospital within the hour.  My resting pulse at that time was 160bpm.    I hadn't wanted to go to see the GP as I felt that all I had was a chest infection.  My wife forced me to go.   I'm glad she did, and I'm glad that I met Mark Conroy.  Had I not went to see him, I might very well not be typing this blog right now.   They reckon that my problem was caused by a viral infection.  I'm not disagreeing with them!

    The administrative wheels of the Army set about medically discharging me, and again Dr Conroy was in a position together with Lt Col John Timothy from the RAMC to prevent this and I was allowed to serve out my time, completing 24 years of service in December 2005.  I have to say that I've been pretty lucky with the Medical Staff whom I have encountered through this journey.  They have been  great people. I just can't say enough good about them.  That most definately includes the German Medical Personnel at the Gilliad Krankenhaus in Bielefeld where I had a short stay in early 2005 when we were posted there.   I've been less fortunate with employment since leaving the Army however.  Whereas it may not always have been the case behind me being turned down for jobs, there were a number of applications which had asked for medical history and where despite being exceptionally qualified and experienced for the roles I had applied for, I was never interviewed.   I get the feeling that some Occcupational Nurse perhaps took fright at the mere mention of Dilated Cardiomyopathy and Atriel Fibrilation...........perhaps because I consistently spell them wrong!!!  

    To be frank, the first few weeks after being diagnosed were somewhat novel.  I had infrequent strange sensations in my chest which caused concern...especially amongst the other blokes in my unit.  We'd just lost our Officer Commanding to a cardio episode and our Regimental Sergeant Major was still recovering from his heart attack and now here I was floating about the barracks with DCM.  We were a unit of less than 20 people and I'm sure that some of the younger lads believed that the unit was cursed and had regretted not joining the Air Force when they had the chance. 

    Anyway, the family has adapted to it, as have I.  I've been pretty lucky I have to say.  Apart from the daily drugs regime and the monthly INR tests, I more or less carry on as I did before I had DCM.   I never did get a job, so I took myself back into University where last September I graduated with an MSc and then went straight on to a 2 year Senior Status Law Degree, which I complete next summer, the intention being to complete the Bar Vocation course in 2010.  We'll see where that leads us. 

    As a family we've had a lot of unrelated stress since I was diagnosed, but we've managed to get though it all.  We've done this as a team. You need a team.  I don't really give my DCM a second thought nowadays.  It's just there.  For those of you who have just been diagnosed you need to occupy your mind.   I appreciate that it's easy for me to say and that sadly not everyone is or will be as fortunate, but don't give up on yourself.  Think positive all of the time.  I came to terms with DCM very quickly.  The only time I got upset was after I had collected my first prescription.  I sat in the car with this big brown paper looked like I'd been to McDonalds!  I'd never been ill in my life, beyond the stuff you contract as a kid.  Now I was 41, sat in a car and crying into a big bag of drugs!  Bloody marvellous.  I started to read all of the websites that Google could throw up where even the merest mention of DCM appeared.   I scared myself some nights.  Best advice I can give you, is once you've got your head around what DCM is.....stop reading about it.  You can become obsessed by it and besides you'll miss what's happening Coronation Street.   You've got a family to be with and your time is better spent with them.  It helps them cope as well.  Remember, that you are not alone and they are just as scared as you.   You need to occupy your mind with something which you enjoy and that'll help you quickly regain some form of normality around the house.   The sooner you come to terms with it, the sooner they will.   Oh, and before I forget....the having cups of tea brought to you every 10 minutes and being in charge of the remote for the TV doesn't last long!  But on a brighter note...DCM comes in handy when there's DIY to do!  I've got the 'old ticker playing up' routine down to a fine art! 

    I don't drink anymore due to the Warfarin and thankfully I gave up the fags a year before I was diagnosed.  I hate that Caliber lager but Becks do a cracking alcohol free lager which tastes like the real thing and you don't embarrass yourself after copious amounts of it!   I do need to lose weight though.  I was walking up to 3 miles a day up until about December last year but it gets so bloody cold up here and I got a bit lazy and stopped.  I've just started again now that the weather is better, so hopefully I'll have shifted some of the weight by August as my eldest who will be 9yrs old  then, wants to go to London for her birthday and I don't want to go looking like a Teletubby. I'll keep you posted on the diet.   Shamefully, I'm a 40 inch waist right now.   I'd like to get down to 36 again by August.

    Keep smiling!

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