My son has been diagnosed with DCM after cardiogenic shock and mild stroke. He had Covid and was ill for a few months which GP and A&E initially put down to GORD but it was HF.
He is recovering and out of hospital but struggling with side effects of medications-can these be tweaked? How long can he expect his heart to show improvement? He is 40 years old and infarction was only 10-15%. He is usually very fit, goes to the gym but did drink alcohol and likes his food. He has lost 3.5 stone.
Any advice appreciated. Thanks.
Written by
Titch1963
To view profiles and participate in discussions please or .
Hi there.. I'm 43 and was hospitalised with acute cardiomyopathy in November last year with EF of 13% .. When i was released from hospital they spent months tweaking medication and increasing doses, it does take a long while to get the medication dialled in and increased.
My EF improved to 31% after 6 months. Giving up alcohol/drugs/vapes/caffeine & crap food coupled with the medication probably helped alot.
I would imagine he will be passed over to cardiac rehab after they get his meds sorted, make sure he sticks at it, it really helps.
If any of the meds give him jip, let the cardiologist know exactly how he is feeling and they will deal with it until they find a good fit.
Thanks for your reply. I think shock has kicked in and can't see the wood from the trees but I'm trying to stay positive for him as he is very anxious about the future so every little thing becomes magnified and we both worry!
Yeah I hear ya, I know exactly what he is going through, first thing I did was google cardiomyopathy and thought I would be dead very soon. The medication is great these days so its not a death sentence by any means, but it is a long road both mentally and especially physically.
After a year my meds are dialled in, going to stage 4 cardio rehab now. All seemed to get easier after 6-9 months once the meds are working and you get your head around your condition and learn to read your body.
Nobody has mentioned cardiac rehab-does he need to ask for it? we are finding our local hospital and the main London Hospital he was taken too by critical care transfer don't communicate very well. His cardiologist is in the London Hospital and were supposed to hand him over to heart nurses in Surrey but not heard a thing from them. Only weekly check is his bloods as on warfarin as there was clot in his left ventricle.
They all work different, you should ask your cardiologist about all the next steps, it took a couple of months to get placed with the local cardiac team at first. My first months were all about tests, bloods & medication and generally getting me back on my feet and then I was passed over to a cardiac rehab team with other nurses and cardiologists for 8-10 weeks and then back to my original cardiac nurse alongside a different stage rehab team.
I remember feeling stuck in limbo in the time between hospital release and the first appointment with the cardiac nurse, seems like ages! but once you get all your questions answered and a plan in place everyone feels a bit better.
I’m the same with my husband every day I’m on tenderhooks especially since his collapse two days ago . He seems ok at the moment but it’s like I’m waiting for the next thing to happen
My husband had a stroke last year he had his first echo in 16 months yesterday . I’m hoping it has improved from an injection fraction of 33% he s had a few side effects from meds in the past . He passed out day before yesterday which was scary .he recently had his sertraline upped to 100mg for his anxiety and I’m wondering if it could have been that.They’re not sure if it was a TIA because the back of his head hurt but thst could have been where he bumped it . Ct scan showed only damage from his previous stroke which is his cause of aphasia and right sided blindness but they’re following it up with phone consultation anyway from stroke unit next Tuesday. I hope it isn’t as it can be a warning sign of another stroke to come. He s on blood thinners and nine other meds for his AF, heart failure etc. what a worry isn’t it . I hope your son will be ok x
Just an update the consultant said it is likely that it was a mini stroke . He said the meds probably saved him from having another major one , he s in digoxin , bisoprolol and a few others I can’t pronounce . His echo results were better he s gone from 33 to 37 ejection fraction in the 3d part and 42 on the 2d part . Didn’t quite understand that bit . Would be good if anyone could explain what that means . The consultant said he would go more by the 3D one . At least it isn’t gone down so should be thankful for small mercies I suppose .
Thanks. He returned to see the cardiologist within 2 weeks of leaving hospital and now the only appointments he has are with the genetics in January and Cardiology in August yet they said 3 monthly at first so God knows what is happening. I'll get his GP to chase things up when he goes on Thursday. Were you able to return to work? He is self employed in a manual trade but not getting any benefits aside from UC which he cannot live on.
I tried to return but occupational health signed me off, UC put me onto DWP and they classed me as LCWRA and I have been told I can claim PIP which I have an appointment coming up for. Takes the edge off
Ask UC about LCWRA and google "Personal independence payment" have a look if that is fitting for an application.
Tell him the need to put health first, its a long road. Wages are no good to a dead man so dont push yourself too hard.
No problem, most of your questions will be answered on these boards, the community are extremely helpful and there seems to be limitless knowledge on here, so you have come to the right place!
I was diagnosed with dilated cardiomyopathy in 2001 and until July 2023 have continued working and travelling for work all around the world. My ejection factor is 39% which I accept as the best it is going to be. I had my first ICD inserted in 2001 and now on my 4th device. I will be 78 this year and my ICD battery life is about 3 years. I don't intend to have the device replaced and will call it quits at that point. I have also lived with permanent AF with 4 years are numerous cardioversions and one ablation. I have just barged the midi canal in France and Cruised on the QE so I'm not giving up. Take a lot of care and remember life isn't over yet. Best wishes Ancient 1914
Very sorry to hear this. I empathise completely as I was diagnosed Nov 23 with it. Similar, I was very sick for two years no diagnosis said related to an ongoing condition of adhesions bla De bla. Then a large AF event for a week and off to hospital. I also had lost about 10 kg. Had an ongoing, pain beneath rh rib cage. In hospital Dr said likely was due to water in a sack around lung and liver... Still have it and pains in buttocks back (etc) . Placed on meds which helped and I went from 10% EF to 16 then 25%. Then in August had a biventeicular pacemaker fitted. For me not much improved, although the cardiophysiologist said it is doing a great job. Said it may be meds giving me prob. Still waiting to see cardiologist and have an echocardiograph to see how ef is now. I can only do about an hours light chores each day. No reason for mine. I believe it’s been coming on for years. May be genetic I must ask about a test. All the best.
Interesting I'm exactly the same ill for 2 years post Covid and then diagnosed with DCM. Genetics have been ruled out I too am convinced it's done to Covid
I'm 38 and got diagnosed with Dilated Cardiomyopathy a year ago, EF was 20%. Meds are at strongest/optimal dosage, lifestyle changes (I do still drink alcohol but not half as much) Had a few different scans along the way and my EF is currently at 50%.
I was worried beyond belief at the beginning, Google was my worst enemy too. With the right medication and lifestyle change I have got in a much better position. I have built confidence to push hard in the gym with no adverse effects.
Speaking from my own personal experience only. Hope your son is OK, try not to worry.
Thanks. Did the meds give you other issues? He seems to spend most of his time on the toilet with upset stomach or very dizzy on standing due to low blood pressure. He is also on Warfarin as had a blood clot in his left ventricle. We are only about 8!weeks into treatment.
The below is what I have been taking from the very beginning. I started on a lower dose than current, the meds were increased gradually to asses side effects.
Bisoprolol = 5mg
Eplerenone = 50mg
Dapagliflozin = 10mg
Entresto = 97mg/103mg
In all honesty I haven't felt any major side effects, only noticeable change would be going to the toilet more frequent.
A friend of mine with a heart condition can only tolerate half the Entresto dose I'm currently on as he has dizziness and headaches.
I was diagnosed with mild dilated cardiomyopathy which was inherited almost 15 years ago when I was in my 50s and am still healthy at 69, with the supporting meds and adjusting my lifestyle. I had trouble with being out of breath a while ago and I thought my condition was working but after a change to my asthma medication I feel as though I have new lungs. It does take the meds dosage a time to settle at the right level, but it is also very easy to feel you are about to peg it - the words heart condition will put fear into almost anybody. I feel healthier now than I was five years ago, so there is always hope. I see a cardiologist and have echos etc every 2-3 years, but other than that I sometimes have to remind myself I have the condition. I hope he feels better soon and his meds get sorted out.
Thanks I'm hoping he gets to look after me in my old age lol. I just want the other symptoms to improve so he can start to feel better. He is dizzy from the low blood pressure yet the cardiologist wants it on the low side, he has upset stomach nearly all the time on the meds so often doesn't want to go out. Tell me this improves as the body gets used to it please.
If he still has the symptoms after a reasonable time, he needs to go back to the GP to ask them if there is an alternative. It's a matter of trial and error and tell him not to worry about becoming a pest - I am practically on first name terms with the people at my GP surgery from persisting. He can also ask to speak to a pharmacist about the meds. There is always hope. Good luck to you both xx
Hi sorry to hear about your son’s diagnosis of DCM. I was diagnosed 21 yrs ago having various tests then an angiogram. I have it in my family on my mum side and possibly my dad’s too.
Besty has given some good advice on benefits, but I continued working up until 3 yrs ago when I had a bad fall, dislocated my right shoulder and it became permanently damaged.
Since I was diagnosed medications has become so much more better, so hopefully he stands a good chance of seeing his pension years.
Tell him well done for all he’s achieved, loosing all that weight and he should speak out on how he’s feeling when he sees the nurse/cardiologist. They have all the medical knowledge.
Wish him all the best, and do let us know how he’s getting on. Maybe one day he will feel comfortable to post in the group himself.
Hi last year I to was diagnosed with DCM with a left infraction of 10%.10 months ago I was fitted with a cardiac resynchronization device plus a defibrillator,I'm also on four heart tablets to help with the symptoms,I've always felt fine before the diagnosis and it was found due to me going to the GP with a persistent cough. After being diagnosed and seven days in hospital to allow for the tests .
Then transferred to to care of cardiac care in the community nurses who monitored my health until they got all my meds at the level the consultant wanted before he could fit the implant.
I've felt great since walking 10.000 steps every day plus my own exercise routine, holidays now back to being taken abroad as well as UK.
The only bad effect is I now suffer from ED ,which is a disappointment.
Hi when I was diagnosed with dilated cardiomyopathy and severe heart failure. I couldn't work and I claimed Employment Support Allowance and PIP, my ESA was based on my contributions. I eventually got placed in what they call a support group which means you get a higher rate and basically they leave you alone no reviews etc. I got it for 8 years until I eventually got my pension last month. I would seek advice from somewhere like the citizens advice centre re any benefits as the forms are a total nightmare, my council has an advice works and I used them, they were great and I got both benefits.It turned out I had arythmogenic cardiomyopathy caused by a faulty gene. I live in Scotland and we don't get cardio rehab with this diagnosis. I hope your son will eventually feel a lot better as his body starts to tolerate the meds, take care char.
I would suggest paying the small membership for the website Benefits and Work. I've been disabled since 1985 and have found that site invaluable with claim forms. Much much better than CAB. When I used CAB to go to tribunal I lost. When I claimed DLA again ( as it was then) using Benefits and work, I won. I had to claim every two years so I had a lot of experience with the forms. Also look at cardiomyopathy.org/living-cardiomyopathy/benefits
Hope he will get rehab which will help a lot in confidence in what he can do plus advice re diet etc Meds as others have said it takes time to get the ones that work for you bestPIP advice you need help to fill in form its a nightmare and you need to know what to put Work and Benefits is a great place to look on line and citizens advice if you can get app ointment of course. IF PIP turn you down upu beed to ask for a mandatory reconsideration get a copy of assessors report so you can see what she has put which will probably bear no resemblance to what he said. If still turned down ask for a tribunal Good luck with it all
Hi there, I am sorry to hear about your son's heart problem. Before I give an opinion about his cardiomyopathy, I would like to know why he received cardiogenic shock. Did he at one point develop cardiac arrest. One positive thing is that he has lost weight through dieting, reducing his alcohol intake and cardiovascular exercise at the gym. It takes some time to see the improvement, There was one thing I would like to point out is the use of abbreviation in medical matters.
Hi no he didn't arrest but his heart could not pump sufficiently to get oxygen to his organs so they were failing. There was a clot in his left ventricle. They described his collapse as cardiogenic shock. Fortunately he was already in hospital when this happened having presented to various A&E's before he was admitted. Original treatment was blood thinners for pulmonary embolism but that probably saved his life as the collapse and clot was found 2 days later. He spent 2 weeks in CCU in a specialist hospital in London before spending another 2-3 weeks on a cardiac ward then virtual ward.
Don't go to his GP ring his cardiologist consultant tell him/her or other, he's having side effects from the medication and hopefully he/she or other, will tweak them for him hope this helps
Get his cardiologist number off the hospitals website and contact the secretary and he/she or other will at least let his consultant know or put you straight through to the consultant hope this helps and sorry about he/she or other thing 😂😂
Hello sorry to hear about your son. There is hope, I was diagnosed 2023. Previously in good health no other illnesses. Mine was acute HF. My left ventricle was enlarged, leaving Mitra valve, 16%ejection fraction. Atrial fibrillation too. ICD fitted too. I thought the worded. Now 53.5% ejection fraction, left ventricle was severely impaired but by a miracle it has shrunk back to normal size and thickness. AF has played up and been hospitalised a few times as meds stopped working for that. Now having an allblation next week hopefully that will put my AF into remission too. I sorry to bang on about me, but want to give you hope and confidence. This is not a death sentence. Please 🙏 keep us informed and tell your boy my story x
Thanks fortunately there are no other issues with his heart. Just the DCM causing HF. He had a clot but this is dissipating. He is doing well but is struggling to tolerate the meds i.e lots of visits to the toilet and low blood pressure causing dizziness. If these two things were sorted I'm sure he would feel better but it's hard to discover which med is doing what or even who reviews them and the side effects. I will definitely share your story as he is pretty convinced each pain or symptom is the end so any positivity is helpful.
I've been diagnosed with DCM in March this year, aged 43 and had a CRT pacemaker fitted at Barts London. I found a lot of support at Cardiomyopathy UK and British Heart Foundation! Last weekend I went to the CM UK National conference in London. The talks can be watched online as well and are very informative. A lot has changed in recent years with Cardiomyopathy, with genetic testing and improvement in medications.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Dilated cardiomyopathy 
dilated cardiomyopathy
Pregnancy with Dilated Cardiomyopathy 
Dilated Cardiomyopathy?
Dismissed by cardiologist with possible dilated cardiomyopathy?
