Don't know what happened.

Hi All,

I had a cardiac arrest about 7 weeks ago, which resulted in a 5 week stay in hospital. I found out I only have 10% Heart use. I'm awaiting a operation Cardiac implant device which should see my heart improve to 15 or 20%.

I was wondering could anyone give me advice on what's happened to me & general advice on what I can do exercise & diet. I am very confused at the moment. I get headaches every day & my doctor told me I was lucky just to have headaches after what I'd been through.

I don't know if I'm entitled to any benefits or not, as it's costing me a fortune in taxiis to the doctors & the hospital for different things. If anyone has any advice it would be most appreciated.

Thank you Steve....

14 Replies

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  • Good morning Steve, if you are under 65 then you could be entitled to benefits. If you were employed then you should be receiving sick pay, if not apply for ESA, severe disability payment & Personal independence allowance. It would be worth asking about NHS financial support, it may cover you for transport to hospital, dental, prescriptions, eye tests & glasses, chiropodist.

    I have been receiving as above for 3 yrs, I had dilated cardiomyopathy, EF 15% & other cardiac problems, had heart transplant 12mths ago.

  • Hi Porsche,

    I am getting sick pay at the moment & I'm in the process of claiming Personal Independent Payment, I didn't know I could claim Severe disability allowance, even thought my heart only works at 10% & should increase to 15% when I've had my operation. I just don't understand all the rigmoerol, I know we have to make sure it's been claimed fairly. But when you have a serious condition it can become a bit daunting.

    Anyway thanks for your reply, I'll let you know how it goes.

    Serve.......

  • Are you claiming ESA Steve? If you are awarded PIP & you sound like you should be, you will be entitled to Severe Disability, you don't have to claim it as its an automatic benefit. You may also get council tax reduction.

    Once you have PIP you'll also be able to apply for a bus pass & blue badge for parking.

    All the best

  • Porsche,

    Thanks again for your info. I don't drive anymore, however my sister is looking into the Blue badge, as she drives to appointments when she can.

    I have recently had to have an eyes test for a new prescription because after all that I've been through my eye sight has changed & that was £55 for test & £200 for new glasses its ridiculous.

    Anyway I'll add it all up & DWP know I think its them who I should talk to ???.

    Kind Regards.....

  • Steve, hello

    I don't know anything about benefits I'm afraid but imagine you could find out from, maybe, Citizen's Advice. But I think I have some idea how you might be feeling as a similar thing happened to me. I had a cardiac arrest at home, my husband gave me CPR and I came round two weeks later in hospital out of an induced coma.

    I am now medicated to keep my blood pressure lower etc and take an anticoagulant but three years on fewer drugs than initially. I also have a defibrillator and pacemaker (ICD) which are monitored electronically.

    Living in France, I guess the advice may be different but after four weeks 'reeducation' as they call it here, I eat three balanced meals a day, no salt, and exercise (I row) for at least twenty minutes six times a week. I've always walked a lot and continue to do so.

    I, too, get headaches and my GP tells me that I don't drink enough water which I try to do. If they are bad I take some paracetamol and enjoy being alive, I don't mean that flippantly but the odds are that I shouldn't be.

    If it would help we could FaceTime or something to have a conversation that wouldn't be of particular interest to others.

    Penny

  • Hi Penny,

    Thanks for your reply it was very interesting & informative. I will have to find out how how to face time I have never used it. Once I find out use it do I just put your name in or something.

    Serve....

  • Actually I'm not sure if the site encourages 'off public' contact but I'll try to find out.

    But, in case this helps, after I had been discharged for about two months I was given the opportunity to go to (I suppose you'd call it a sort of) outpatients every week day for four weeks where we did exercises, aquaaerobics, running etc supervised by a physiotherapist followed by relaxation and lectures on understanding and managing heart problems, healthy lifestyles etc and individual counselling. It was very thorough.

    My understanding is that in UK your GP can sometimes recommend that you go to a local gym where a programme of activities can be suggested to you.

    We were told not to smoke, to drink alcohol in moderation, lose weight and not to eat much unhealthy food, all of which you will know.

    It might also be an idea to google whichever medication you are taking so you are familiar with what it does and possible side effects. Eg one of the pills I took for a short while to keep my heart beating normally gave me nightmares and it felt better once I knew that was why I was having them. One of my pills is a diuretic which I suppose is one reason why I need to keep drinking fluids (I was told 2-3 litres a day, it's a lot!). Side effects may be why you get your headaches.

    Having the ICD inserted really wasn't a problem and has since given me a lot of reassurance. It's made up of a defibrillator to give my heart a shock if it's slowing down too much and a pacemaker to keep everything going. Not sure why I need both but happy to have them. What is happening with them is monitored by a little box at the side of my bed and also by the consultant at my check up visits, now only once a year.

    I think you've done the hard part, my understanding is that fewer than 8% of people survive a cardiac arrest. There is lots of good, supportive advice on the forum.

    You will have seen that it's a good idea to get to see an Electrophysiologist (EP), you may well do already also see if there is a specialist nurse you can be in contact with. I'd make a list of questions you want to ask otherwise if you are anything like me, you'll forget some of them until after you leave your appointment.

    Ask again if I can be of any further use.

    Best of luck

    Penny

  • Thanks again, I did Google my medication & your right one of them does produce headaches & another makes me thirsty, that does put my mind to rest.

    However, I do get strange episodes when I think I've already done something or I am watching something on the TV maybe a quiz show or the news & I'm thinking this can't be right them questions aren't right or that news is wrong.

    I don't know what they're going to do to me until I have my pre-operation on the 16th Aug they did say something about fitting a Cardiac Implant device but that could mean anything.

    I just what to get this out of my way so I can concentrate on getting better. Did you go back to work?? I'm not sure if I'm up to it. I work in a local college as a Learning technical advisor a cross between a librarian & a technician, the noise can be horrendous.

    Thank you

    Steve.....

  • Steve, hello

    I was thinking about this last night. If you had your cardiac arrest 7 weeks ago followed by 5 weeks in hospital you must only be home for a couple of weeks. Have you really not been receiving attention from either the hospital, a specialist nurse or your GP? You should be I'm sure, contact your GP and say you need some support. Make a fuss.

    Keep making a list of questions and adding to it as you think of things. You have had a life changing and threatening medical happening and you shouldn't be left there alone.

    Going back to your questions, I had already retired by the time I was ill but I could, eventually, have returned to work. I think it took me a good 6 months before I felt well again, and I work hard now at exercising, raising my heart rate for about 20 mins minimum a day. My 'heart use' is now up to 50%, normal I believe is 50-60%.

    I had the most bizarre thoughts and hallucinations when in hospital and soon after and a doctor friend told me that they were probably as a result of drugs I was given in hospital and that they would soon stop. They did.

    If you work in a college, it is likely that they will have gym facilities and sports staff. You could ask your GP to tell you/ them what you can do and then ask for help from your employer to set you on the right track in the gym.

    If you want to return to work, and I urge you to take your time (is 6 months still the length of statutory sick leave) and think about maybe asking if you can have a phased return to work.

    A Cardiac Implant Device (ICD) will be either a pacemaker or a defibrillator or both. I have both as I explained before. It is very small and I don't notice it but I go round body scanners not through them. You can google it to find out more or probably find information on this site. All this must be like being back at work and helping students find things out!

    Take care

    Penny

  • Hi Penny,

    Thanks , I am planning to take the 6 months off. By then I'll see how the implant is working, I'll take my time returning to work though.

    I have a local swimming baths not far from me a couple of buses stops (if I get a free buses pass that will be ideal). I also have a basic rowing machine that I can exercise on & I'm looking out for a second hand cycling machine, so exercise should be ok, I am just waiting until after the op.

    I'm glad these headaches & hallucinations will fade away they do wake me up or interrupt my sleep, which I'm not getting a lot of at the moment.

    Your right about like being back at work researching all I can about my condition. I thought it would be a defibrillator, however my sister's keeping coming up with different names for this device I'm having implanted. I'll get to the bottom of it eventually, they only have my interest at heart ha ha. Bye for now

    Kind regards Steve...

  • What causes the cardiac arrest? I have ectopic beats from time to time, & I`m scared that my heart will suddenly stop beating.

  • Hi hairyfairy,

    They said mine was caused by to much drinking & they reckon that I'm a alcoholic. I don't agree with them but I have no say. I admit I was a heavy drinker, but no more than my friends & less then many more.

    I didn't know I was having a cardiac arrest I thought I had a real bad upset stomach. I was brought to the local hospital where I arrested while they were checking me out. Lucky I suppose, obviously not my time yet.

    Steve......

  • Hi BuckRogers1963!

    What a pleasure that you are still here! You have gotten some really wonderful and well-thought out answers tonight! I read your post several times and always had to run and there is so much to every reply and everything that you said, it's a miracle that you still have your sanity if indeed you do (I sometimes wonder if I do!) and the fact that you have to start from scratch with new and horrible happenstance with no support medical-wise (like Cardiac-Rehab in a hospital monitored setting for 3 months and Classes on diet and What to Expect when your Heart is on the Fritz!) or emotionally (therapy perhaps or just maybe a support group, well actually that can be US because WE CARE! How's that!?).

    I guess the little outline-rundown that maybe I can share with you is about your implant. I had to get a CRT-D (Cardiac Re-synchronization Therapy-Defibrillator , Bi-ventricular Medtronic XT- Protecta model) because I was clinically headed for a sudden Cardiac Arrest. My dad died of one when I was 21, I had recently gone to the ER with SOB (Shortness of Breath), Chest Pains etc and was diagnosed with Left bundle Branch Block (a nerve block of all the nerve fibers that help conduct heartbeats in the Left Ventricle), Cardiomyopathy, Tachycardia, and all these other things. Plus my Ejection Fraction (your heart's ability to pump the blood) had taken a nosedive down to 20% and I ended up leaving my Chicago Public Schools teaching career to go on permanent Disability (never knew at the time...that took a few years to get to that when I didn't actually fully recover).

    Tests of every kind were done from 2011-2012 (I had a lot of reasons why it took them a yr to decide to just do the implant and one of them was I didn't feel I wanted a pacemaker) and it became clear in August 2012 that my EF was NOT improving and all my other heart numbers and ECGs were terrible and with my dad's history and my declining health and functioning ( and I lost 28 lbs and only weighed 100 lbs at 5'5") the pretty much ambushed me into having the implant done within a matter of days from what I thought was going to be a routine EP/Cardiologist appt. So no, after that I never had that SCA they spoke of because if it ever HAD happened, the defibrillator would fire off.

    Now that was me and this is you. You HAD the SCA (Sudden Cardiac Arrest) . You are waiting on the implant. WHEN you get the implant , and hopefully it's a good one like mine...I have a lead in the right atrium, in the right ventricle, and outside of the left ventricle just wrapped around it so EVERYTHING IS IN-SYNCH and all the heart damage that was done in a previous heart attack that caused this mess, and cardiomyopathy and not only LBBB (Left Bundle Branch Block) but also Right bundle Branch Block and other Blocks, IT MAY HAVE TAKEN 3 DIFFERENT EPs alot of MONKEYING AROUND to get the SETTINGS RIGHT and the PROTOCOLS OPTIMIZED...but now after those 4 years with my BUDDY my heart had an EF (ejection fraction) of 50%!!! Yay for me! I thought it would never happen!

    So my word to you is: DO NOT FEAR THE IMPLANT! You cannot even see it in my bikini!

    Next word to you: See if UK hospitals/doctors have Cardiac Rehab with supervised treadmill and sitting bike using one-lead ECG and taking blood-pressure before/during/after exertion. Also your pulse (Heart rate) They should have classes in: What you should and shouldn't do after SCA, Nutrition, working, symptoms, emotional health, medications heart patients are taking and what they do, etc. etc.

    I live in the USA and these things are things I participated in. I did Cardiac Rehab monitored after my heart attack and I still take a lesser-monitored Cardiac Rehab to this day! Usually doctors wait 3 months before any patient goes anywhere to exercise, monitored or not. You should have a Follow-Up appointment soon, and if it hasn't been scheduled, call tomorrow. Also like PJR said, ask for advice on support groups and Rehab. Last, I wouldn't hesitate to register a complaint about the individual who said that SCA is caused by being an alcoholic or whatnot, otherwise implying that you had this awful painful fate for this type of thing. SCA is an inherited condition or sometimes not, it is a condition of the electrical physiology of the heart which involves the bundle branches of nerves which receive the SA node's signal to beat or the AV node's pickup signal for intermediate nerve bundles to beat (bundles of His) in the Ventricles. If anyone ever insults you like that again you should be ready to file a lawsuit of defamation of character. You have suffered enough.

    Finally, I hope that you will spend some time looking up the things I talked about today. If you Google EF, SCA, LBBB, SA node, Bundles of His, Re synchronization, CRT-D, ICD, Pacemaker, Cardiac Rehab, etc you may find a lot of infor. Also it would be good to ask your doctor what kind of implant he/she has in mind for you. Best of luck and I am praying for you, Please do keep us posted!

  • Hi Pattijay,

    It was so nice to read your reply. At least I don't feel like going around the bend now.I willl look into it (the part about been an alcoholic) I mean, I haven't drank now for 9 weeks or smoked so I am not doing to bad on that account.

    I have had the pacemaker fitted the operation went well & everything working ok. I don't know the make of my pacemaker I just know that 2 wires go inside the heart into each veftericul & another 1 goes down the back of the heart. So it it basically like yours. I have to go for some follow up appointments so hopefully I'll find out there.

    Well Pattijay, it does sound like you've been through a lot & coped quite well with it. Your exciting & the increase in your EF %, that must give you a good boost. It is just like your reply to me. You have given me so much to look into I think I'll be busy for weeks ha ha. Well thanks again & I will keep you posted about hats happening. I mean my sister fill in my PIP (personal Independent payment) form & posted for me & this will see if I get any benefits so at least the ball has started rolling,

    Thanks again.....

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