dilated cardiomyopathy/ventricular tachycardia

i will apologise now for the long winded story but what i have been through may help someone i am a ex semi pro boxer so all my life been fit 14 yrs ago i was diagnosed with hypotrophic cardiomyopathy enlarged heart with thickening to the walls was put on meds and told the heart would repair itself the meds made me feel terrible so went back to the drs to tell him im cutting out the meds he wasnt happy but said will you come back for a heart stress test i agreed i returned to boxing and went back for the stress test he told me i was fitter now than i had been before but said to me if you ever feel bad again start with the medication 14 yrs passed and nothing at all until the 9th of sept 2015 driving back from Scotland got a massive pain in the centre of my chest and really couldn't breath i was rushed to Lancaster royal infirmary with a heart rate of 230 bpm as i got into a and e they worked on me and was just about to defib me when my heart restored its normal rytham 10 days in the hospital they diagnose ventricular tachycardia and refer me to my local hospital while im waiting i had another attack so rushed into my local hospital they got me stable put me on a drip and meds the consultant came to see me and said i needed a icd a pacemaker and defibrillator so when i go into vt it will shock my heart back into a normal rytham because if it doesnt i will die so i agree to have the icd fitted so another week in hospital icd fitted and home we go 6 or 7 days go by i start feeling really poorly cant hold my bladder feeling dizzy so of to the hospital i trot again this time i have caught septicaemia so they stop all my medication and treat the infection 2 days in vt kicks in and i get shocked twice so rushed back up to cardiology where they go mental for them stopping my heart meds so 11 days in infection gone back on meds off home we go 3 weeks later im back at work from out of the blue comes fluttering in my chest really dizzy and a massive feeling of unwell i sit down try to compose myself then boom here comes the first shock like bieng struck by lightening i get my breath boom another at this point im shouting call a ambulance the ambulance came and rushed me to james cook hospital im middlesbrough by this point i had been shocked 46 times as my heart would not go back in to a normal rytham they rush me straight into ccu and work like mad on me they get ma stable then tell me i have had a cardiac storm where you go into vt the icd shocks you to bring back your original rytham but you go back straight into vt so here i am laid in a hospital bed thinking i just want to die on a drip and a change of meds a consultant then comes in and says we think you will benefit from a heart ablation so yet again i agree so off we go as they set off to do the ablation i hear the consultant say dam hes gone into cardiac arrest they pump me with meds the next thing i know is im coming round the consultant tells me as soon as he touched my heart i went into vt they managed to settle me and do the ablation he also said after he had done the ablation he tried to put me back into cardiac arrest but couldn't so in his opinion it was a success 12 days in hospital im back home but still not feeling great getting palpatations dizzy really not well at all i visit the hospital on 2 further occasions with a change of meds so wed just gone they say to me right your off to cardiac investigation unit so off i pop while im there im asking all kinds of questions and the nurse is adjusting my icd by lap top suddenly i get this fluttering so i say wow i can feel that its just the same feeling i get before i go into vt the 2 nurses look at each other and carry on ask me what meds im on and off they go so when they come back they say we think we have found the answer i was on 12mg of bisoporil to bring my heart rate down this is a massive dose so what was happening was the bisop was dropping my heart rate my icd was kicking in on the pacemaker side of things and trying to raise it so i have 2 things going on inside my body working against each other so back to the ward i go they change all my meds to the lowest dose i can have for heart protection tell me that my heart is coming to its natural end and i will need a heart transplant i have now been home 3 days the meds i am on now are keeping me stable but i cant take them as they directed all in the morning and at night as im ill for 2 hrs if take all at once so i have had to become my own dr and spread them through the day to feel ok day 2 im feeling quite normal again but what im saying is dont take everything as gospel you know how your feeling dont be afraid to ask questions after all its your life so my story ends with trying to keep myself stable with this condition until they say right boyo heart transplant even if that day comes but time will tell so if your getting palpitations skipped beats its all normal with this condition its finding the right meds that suit you to control it

26 Replies

  • Wow, this is very insperational. Speechless.... Wishing you all the best with everything <3 you sound like a warrior!

  • thank you sophie but i have got it and just have to crack on with it its hard at times as i am so used to bieng up and about not sat around measuring my blood and heart vitals hope you get sorted out too its nice to talk to people with same conditions

  • If you don't mind me asking, how long a wait is it for a transplant? Is there anything we can do to help share your story and courage?

  • they have said to me they want to run my natural heart for as long as they can before transplant but you have to be healthy enough to go through the op plus getting a heart and same blood type so im unsure just trying to get myself stable at the momment for now

  • Wow, that's pretty hard hitting. How are you feeling about it all?

  • the transplant well im going to get myself stable again and then try to get myself back fit firstly by walking on the treadmill and build up slowly im going to see if i can fix the heart i have with a bit of light running to start with get my heart beating and working its worth a try i have nothing to loose but if i need a transplant i suppose its just something i will have to deal with at that time but i will do my best not to let this beat me what are your plans with your condition

  • I have no idea to be honest, i've had two failed ablations, last one was last year and thought it had all gone until I collapsed at work the other week and A&E told me it was my heart, so back on 6 meds a day and will be lucky if I get a cardiology appointment before February now to discuss options....

    I felt really low about it all, but after reading this it definitley puts things into perspective and am feeling a lot more grateful.

  • i think its hard for all of us with this condition and so many variations with vt and svt i met a nurse who had benine vt and was working with a heart rate of 138 at rest but she had no symptoms but she wont take meds or anything i panic if i go over 100 bpm

  • That's mad! I panic too haha, think it just comes naturally now as you don't know what it is. Also, since I collapsed the other week I now get pain in my jaw as well as my chest which didn't happen before... Not sure if it's connected..

  • why did they not keep you in when you collapsed if i get palpations they send a ambulance for me and usually keep me on the cardiac ward for a week i have spent 6 weeks in hospital in the last 4 months i hope now im starting to settle down i think you have to push them sophie ask questions make them do something its your life you only get one get on the phone until they are sick of you ringing you need answers

  • They didn't keep me in as they said because it wasn't an infection they could treat that was messing with my heart that I should just go back to work and restart all my meds again. I phoned the cardiology team last Friday and they told me they had lost all my paperwork and referrals from 4 years! So got to go through all the lengthy policies and procedures again just to get an appointment. It all does worry me a lot but I also feel like I'm bothering them too much and remind myself that there are other heart sufferers like yourself that need more of their attention than I do - So just tend to keep quiet and wait my turn..

  • dont do that get on the phone and demand you get sorted out they have a duty of care towards you i have had stand up rows in my hospital bed with my consultant like we are a married couple and her registrar she got up and stormed out then came back and said i was booked into surgery the next day so have your say voice your concern

  • I used to get slight jaw and neck pain that with episodes when my heart ate was over 200 xxx I think it is to do with your muscles working and tensing up?

  • Wow, you have been through so much and have been so strong throughout like Sophie said its an inspiration. I like Sophie have got SVT waiting to see if my 2nd ablation has been successful. Have you been stable since your ablation then? It really brave to share your story. But I think it helps all of us to talk, you can get quite down when You think your alone seeing the inside of the hospital weekly then you realise there are so many of us with all different types of arrhythmias. Stay strong and like Sophie says let us know if we can help in any way.

    I wish you all the best 😊

  • they tell me it is too early to tell if the ablation has been a success as they say its a 3 month process i do get episodes of where i can be sat down with a resting heart rate of 82 then it will jump to 111 for no apparent reason but without feeling dizzy and the fluttering in my chest the hospital tell me this is palpitations and not vt and is common in recovery time will tell i am struggling with my medication at the moment as bisopril doesn't agree with me so they have changed my meds but if i take them in the morning as they say it puts me on my back for 2 hrs so im trying to stage them through the day its a long hard battle a friend of mine his wife is a cardiac sister at my local hospital so she helps me massively but she is very direct and tells me do you really know about how serious my condition is and i will need a heart transplant if im really honest i think this will get the better of me before then but lets hope not but what will be will be hope you have success with your ablation

  • Same as you its to early to tell I had a complex SVT so they just call it atrial tachycardia because I not only have it in the right but the left also. So they were very reluctant to ablate again as I would be left with lots of scar tissue but I couldn't go on how I was going up to 230 every other week. My resting heart rate before this ablation was about 110 but now I'm 70-80 so that's good. But like you say the first 3 months is like a blanking period as you can still get palpitations. I've had a few odd flutters but nothing major like before.

    I think you have been very brave and I hope everything will go well for you and be a success. I'll keep my fingers crossed.


  • sounds very much like mine i still get a sudden raise in heart rate for no reason but soon comes back down they tell me palpitations and is common and should settle down easy for them to say that im self employed and busting to get back to work but i have said to myself i will stay off now until the second week in january so i have about 6 weeks to repair then i need to go back its 4 weeks today since my ablation and i have to say the coronary care at james cook in middlesbrough was perfect not so sure about my local hospital i hope you recover well and back to full health

  • Yes sounds like similar symptoms. But I think all is very normal. I am under Barts in London they also have been great. I am a hairdresser and get SSP which isn't very much. I had 4 weeks off went back last week but only 2 days a week until January. I go back to see my consultant at the end of Jan which would be 3 months from the ablation. Wish you also back to full health.

  • how do you manage to work with your condition i hoover up then im out of breath and have to sit down for ten mins

  • I've been tired but just try my best. I can't do two days in a row as one day wipes me out lol. Also been trying to walk on treadmill to build my fitness up like you said. Do they have any support groups in your area? Mine doesn't at the moment. Wishing u a full speedy recovery.

  • no support groups here but just found a group on facebook for people with icd fitted i have just joined that and a cardiomyopathy group let me know how you get on

  • I think it helps sharing stories with people. Yes let me know how you get on too. I think we had our ablations around the same time mine was November 2nd.

  • yeah mine was 4 weeks ago tomor so no more asprin now yes i will keep in touch

  • hiya dee just got out of hospital was taken in yesterday afternoon another episode dizzy hot sweat and from a resting heart rate of 70 shot up to 125 for no reason and struggling to breath so had 24 hrs in there they have upped my beta blockers and changed some settings in my icd they did say i didnt go into vt so wasnt life threatening but still was scary im not convinced the changes will change things but there the experts so its a waiting game again other than that im back to feeling ok

  • Dee. I know that in your job this might be very difficult but if it is feasible for you to have 1.5 hours off in the middle of the day so that you can get an hours sleep which will reinvigorate your body. My EP suggested it and it does work and saves me getting to that extreme tired state later on which makes things much worse. Have you thought of doing some freelance hairdressing at people's homes? That way you could do just a few hours when it suits and plan in. I have used someone for 13 years now.

  • Looks like I've got to have a Icd  fitted got to have a mri scan first though 

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