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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.
  • My boy walks!

    by Jen heart mum on 14 March 2011

    Hi. Long time no update. What's new? Well at 15 months, my very precious son started walking and the week after crawling. Both are major events in any parents lives but in ours it feels extra special. He is getting a bit bluer and wheezy when he's moving but after speaking to his cardiologist, it's to be expected (especially after he contracted RSV which has messed with his lungs). We had the cardiology outpatients last month too and the leak in one of his valves is getting a tiny bit worse. But the leaks are both still classed as minimal and no one appears worried. It will never stop me worrying mind! But they don't want to see us until August so that means a full 6 months again between check ups. 

     

    The winter was pretty tough on us at the begining. We were in hospital every month for various ailments and by Christmas, his oxygen levels were down to 60%. The lower limit without intervention is supposed to be 75% but it was decided as he was not in respiratery distress to just wait and see. By the New Year he was back up into the 70's again and a couple of weeks after it was in the 80's. My baby also managed to contract bronchiolitis yet again and our GP insisted we go into hospital (against our better judgement as swine flu was rife). But my boy is showing me what a darn good fighter he is and overcame this within a week. Bearing in mind that a year previously the same virus put us in hospital for a month and was borderline for going back into the ICU. 

     

    So the future..... We keep on going. The children's cardiac services are most likely going to get a huge overhaul. Still no surgery planned until his last "fix"= The Fontan (open heart surgery). I have to try and get my little man off the bottle and keep his weight going up. Hope his medication gets changed in the next year to a once daily BP med instead of a twice daily which used to be three times a day. My final words until I bblog again- HLHS is a monster. It's one though which so far my baby is winning the war with. There is still no cure. That sucks!

  • Now at the 6 months stage following my open heart surgery in June 2010, I am finally feeling back to 'normal' - whatever that is! I am hitting small targets one by one, which make me feel the road to recovery has been successful. These goal posts have included: running / swimming / cycling for the first time, first airplane flight, first nursing shift. More recently, I have been discharged from the physiotherapists who have been treating my neck and shoulder pain following the surgery. At every step, I want to do a little skip and shout 'look at me, I'm better!'.

    This year, I have set my resolutions to almost the same as last January, just before I was diagnosed with an ASD. My life was altered so dramatically at that time, so thoughts of scars, vanity and generally womanly concerns such as bikinis went out of the window. I can honestly say the only negative feeling I have had towards my scar post op is how much is hurts to wear a sports bra and heart race monitor! Don't get me wrong, I'm not a tomboy and I have hundreds of gorgeous heels but for some reason, when I was faced with the prospect of life altering surgery, I was 100% focused on getting well again. This is just my perspective and I'm sure many women would feel completely differently. I am genuinely looking forward to wearing a bikini in summer.

    When having the discussion with the surgeon about my choice of scar (vertical or horizontal under the right breast), I opted for the vertical incision as I had read that there was better recovery, particularly for swimmers. The top of my scar is visible from pretty much every top I wear, unless it is a high turtle neck. This doesn't bother me and I would be willing to explain what it was to anyone who asked. Nobody has as of yet! I catch people looking at the scar from time to time but let's be honest, how many woman haven't had their chest stared at??

    Weight is another issue important to the female sex and surgery which restricts your physical ability to exercise for several months does tend to make you pile on the pounds. Once I got moving again and was nearly back to my normal level of activity, I followed a healthy diet and achieved my pre-surgery weight. Nothing is impossible, you just have to have the mental strength to persevere.

    2011 for me is a fresh start, a chance to do all the things I missed out on last year and an opportunity to share my story with others, with the hope that I can inspire others to take up exercise even after heart surgery. Follow my journey to achieving my ultimate goal of completing an Ironman triathlon by 2012 at www.corinneellison.com

     

     

  • Perspective

    by Jen heart mum on 19 December 2010

    I have tried to reply to the comments from my previous post and it won't let me so this is my now very long answer. It was mentioned that we are amazing. Erm no (but thanks).  I'm a housewife and I'm still getting my head around my boy's diagnosis. My new motto in life is "Just keep swimming, just keep swimming". 

    Let me tell you a little story from last month when we went to get the MMR done. Sat in the GP's waiting room,  get chatting to another family there waiting for the same. Their boy was born on the exact same day as my son and he's legging it around like a lunatic. The Dad asks me why my son is not walking yet. My answer is he will get there when he's ready and has gone through two open heart surgeries in the last year so it's a miracle that he's even alive. This is the delightful mans reply "Well how many teeth has he got then?"  I came home fuming and shouting to my OH about competitive parents and how he should try walking into a PICU to get a little perspective on life. After about a week, I finally calmed down enough to realise we are extremely fortunate. We know what is important in life. It's life that's important. The rest....... It's ridiculous to get upset about little things. 

    To get back to our little miracle and well away from my ranting. He is the most amazing little man. He's pretty much about where he should be developmentally. His brother did not walk until 19 months so we have a long way to go before we get worried. Our littlest boy is a delight to all who see him. He smiles, eats, walks holding our hands (constantly, I'm developing a hunchback), takes his meds, communicates a little and is a star in hospital. He knows how to behave in hospital as long as no needles come near! 

    The future is uncertain to a point. We are expecting no surgery now until school age, so around 4 years old. After that.... God only knows.  There is no cure. The surgeons can help but not cure.  HLHSers have half a heart that is fully functional. The other half is very small and they can only work around this for so long. The future is a heart transplant, hopefully. How messed up is that? We want a heart transplant and know he needs one when the god-like surgeons have done all they can. 

    I'm going to bed now so I will wish anyone who reads this a Merry Christmas and a Happy New Year!

  • Having a child with HLHS

    by Jen heart mum on 15 December 2010

    Hi there. I'm a Mum of two boys. My youngest has a complex heart condition called Hypoplastic Left Heart Syndrome. He has just celebrated his 1st birthday. We found out at the 20 week scan that our baby had a severe and complex heart condition. To say the last year has been tough is an understatement. I don't ever want to go through a year like that again. At the time, we survived. But when looking back it seems incredible that we all made it. But for the record, I don't regret a single thing (although my tone might indicate otherwise).

    At birth, my son was rushed from me to the SCBU. It was 6 hours later when we saw him again. By this point, he was fully ventilated. His poor little body was in a bad way. He had a bowel infection too and the drugs he was given to keep his heart going were making him too tired to breath. The next day we were informed that if he did not start fighting soon, he would not live another 24 hours. Fast forward through an emergency baptism and a transfer to his surgical hospital, he made it into surgery at 4 days old. He came out with multiple tubes and wires but ALIVE! We stayed there for two weeks then we got transferred back to our local children's hospital. After one week there I was informed that he would be discharged on home oxygen as he could not maintain his saturation levels. The very next day, I was told that plan was being put aside so he could return to his surgeon for his diaphragm plication. Gutted! We were planning our lives starting to have them dashed. A week later we got the transfer back to Birmingham. Another week later after a spell in the PICU, we got back to our local again. The plan to discharge again with oxygen was put back into place and we all came home on Christmas Eve 2009. 

    We had an amazing Christmas although it has to be said that some peoples attitudes made us realise who we wanted in our lives. After Christmas our son contracted RSV and had a month long spell in hospital and came out with a feeding tube too. He was exhausted. He little body had been through the worst and a damn virus nearly finished him. During our hospital stay we missed his cardiac catheter that had been scheduled. So at 5 months old, we went back to Birmingham for a catheter one day and his second open heart surgery (OHS) the next day. The recovery from the second OHS was much quicker although he was in more pain the second time around. 6 days post op, we came home, still with oxygen. 

    At six months old, we were given permission to attempt to wean him off the oxygen. It was successful and we could then start really living! Since then our family finally feels real. We have got our son to eat properly and "lost" the dietician. We only have to go back for cardiology outpatients every 6 months, compared to weekly at one point. But every virus attacks our boy and really knocks him. I'm hoping that by next winter, his immune system kicks in properly as right now we are averaging a hospital stay every 3-4 weeks. 

    I found out the odds recently for HLHSers reaching their first birthday. In the UK it's 56% reach this milestone. Is that good? Well for us, we beat those odds. But we know that many childhood illnesses could inflict great damage on our son. We are very thankful to have our family. But we can't take it for granted. Constantly scared seems normal now. We try to hide it as most people can't deal with it. We do as we have to.

  • Today is exactly 20 weeks since my heart surgery to close a hole in my heart (ASD). This might not sound like an important milestone such as 6 weeks post op (when you can drive) or 12 weeks when the breastbone is siad to be healed after open heart surgery. But 5 months after my operation, I can honestly say I feel back to normal, whatever that is! The only physical symptoms I now notice are neck pain when when lifting anything moderately heavy, slight chest discomfort when coughing or sneezing or wearing a sports bra! My scar is still red and visible but is no longer painful. I am back to running 2-3 times a week, keeping up with friends who were about the same level of fitness as me before I started experiencing symptoms. This time last year, I was training hard after completing 2 marathons and being disappointed with my times.  Although I have missed a year of training and events, I am starting to notice how much I will gain in terms of exercise potential. My energy has improved, I never feel out of breath (apart from when exercising obviously!) and no longer experience chest pain.

    The feeling of being this side of surgery is incredible. For the majority of the time, I forget I had heart surgery - never thought I'd say that! After speaking online with many others who have had similar heart surgery for a congenital heart defect or valve repair, I feel very lucky to be symptom free and have good long term health prospects. I am grateful to have no lingering health problems and not to be on medication. Having said this, I have spoken to many inspiring athletes who have overcome multiple problems including transplants and cancer treatment. Check out www.ironheartracing.com and www.ironmankyle.com for more inspiration!I have been continuing to blog about my experience and journey back to health at www.corinneellison.com.

    Recently, two friends have undergone operations. Listening to their experiences of the anaesthetic, post operative pain and recovery, I could easily sympathise as my experience was only a few weeks ago. Speaking to them reinforced the seriousness of my operation which involved stopping my heart for 39 minutes. With a life altering experience, perspective can be gained. I'm not sure if I have changed as a person, but I certainly take less for granted, have become even more determined to succeed and will not stand for wasting time. As the saying goes, what doesn't kill you, makes you stronger!

     

  • In January this year I was diagnosed with an atrial septal defect - a large hole in the upper chambers of my heart. An ASD is a congenital heart defect, but wasn’t picked up with me at birth (I'm now 27). I began to experience symptoms in Autumn 2009 following 2 marathons and an olympic triathlon. At rest, I started to have mild chest discomfort and palpitations. Over the coming months, this worsened to the point where I experienced shortness of breath on walking upstairs and had a nagging daily pain in my chest. As a nurse, I looked up my symptoms and had inkling that my symptoms were heart-related, although I thought it may be a valve problem (close!). I went through a series of tests, including an MRI, xray and trans-oesphageal echo and eventually got the diagnosis of an ASD. This came a huge shock and it took a while to sink in. I was in the middle of training for the London marathon and running up to 16 miles at the weekend. 

    Initially, the doctors thought the hole was relatively small and could be closed with key hole surgery and the 'balloon' device. This would mean a less invasive operation, shorter recovery time and stay in hospital. Whilst I was waiting for the result of final tests, I prepared myself mentally for the thought of open heart surgery. I'm not sure why, the doctors didn't really warn me that it could be an option. Maybe it was instinct or my healthcare background? Either way, when I was told by the congenital heart defect specialists that I would need open heart surgery, I wasn't shocked. I had given myself time to come round to the idea and was almost eager to get the surgery done as soon as possible. My symptoms as they were at that stage (6 months after initial diagnosis) were so bad that I was unable to walk, do the food shopping, manage the stairs or lie flat in bed. My whole life seemed to become focused on waiting for the surgery. Many patient talked to me about the waiting being the hardest part of surgery. Now on the other side of the bedside, I can concur! 

    When the time for the surgery arrived, the nerves kicked in. I was surprising calm as I listened what the surgeon and anaesthetist had to say about the operation. I had to decide which incision to opt for - either the vertical sternotomy or horizontal thoracotamy. I went for the vertical incision as there was less chance of any problems gaining access to my heart during surgery and less problems for my sporting life afterwards, including swimming. As a woman, I felt there was the expectation that I would opt for the least visible scar. For me, this wasn’t a consideration. The most important thing for me was getting better and having the best possible chance of a full recovery. I have kept a week by week diary of my recovery on my blog: www.corinneellison.com I found this helpful, to write down my feelings and receive encouraging comments from those who read my posts.  

    I am now at 15 weeks post surgery. I am back to work, running, cycling and swimming again. I can’t push myself too much and have lower levels of energy still but can feel a slow but sure improvement every day. Recovery at the beginning was pretty tough – quite painful, frustrating at times, suffered with nausea, headaches and tiredness. All this has paled into insignificance now as I know my heart is healed, almost as good as run. Each time I exercise, I remember that my heart has never worked at full capacity until now and for that I am so grateful. The long term aim for me now is an Ironman! 

     

  • 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

    Stephen

  • 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.

    Dawn

  • 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.

    Dawn

  • 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!

    John

     

  • 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 www.williamsheartfamily.co.uk  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!

  • HEART DISEASE and AF

    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?
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corinneellison has a large hole in the upper chambers of her heart; a congenital heart defect that wasn't picked up until she was 27
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