Postpartum Cardiomyopathy with severly dilated left ventrica

Posted , 11 users are following.

Hi, I'm 26 and was diagnosed with the above after having my daughter in july 09', I've been looking for anyone in the uk with a similar experience ever since and this is the closest i've come, although my situation seems slightly different from all of yours i guess no ones is the same. My consultant say's my cardiomyopathy was caused due to the delivery of my daughter, and my blood pressure was so high it was luckily diagnosed straight away before leaving hospital with her, he also say's it can just one day repair itself which i find very confusing, nearly all of my questions to him get answered with 'we don't know' which is very frustrating. My EF in hospital was 10% and at my last echo was 28% so in 15 months it has improved but the doctors want my medication increasing on evry visit which again, i find very confusing but go along with what they say as what other chioce do we have, however saying that i refuse to put my life on hold for example they say i shouldn't fly or leave the country but am looking forward to a family holiday in 2 weeks to Gran Canaria, on that final happy note i thank you all for listening and hope to hear from someone soon. Sam. X

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11 Replies

  • Posted

    Hey, Hope your ok, i'm 21 now and i was diagnosed with postpartum cardiomyopathy last November when i was 20. I have had a pacemaker fitted. how do you feel now?

    Rachel

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  • Posted

    Hi,

    My consultant won't offer me a pacemaker or anything other than drugs to help with my sysptoms, since my last update i've not been doin so well i now need a wheelchair to go anywhere and get very out of breath, they are no longer telling me it will improve on it's own and i've been given a heart failure nurse and tend to see him now more then the consultant but i do have an app tomorrow so fingers crossed again for any hope for the future. Please don't let this get u down about your situation everyones is different and i've also got stomach problems and gall stones on top of my heart condition so i'm sure you'll be fine. X

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  • Posted

    Hey, Thats sad that your not getting any better, I'm not really either i have been in a wheelchair since i came out of hospital in December. I can't lay down and i have problems with water retention in my stomach as well. Are you in England? x
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  • Posted

    Yes, I'm in Nottingham, I was doin ok, slowly been getting worse it's only been the last few weeks that i've needed the wheelchair, Water retention is bad feel soo bloated it's like being 9 months pregnent again and i'm not eating anything i can keep down so should be tiny!. Where r you?. X
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  • Posted

    Hi, I have Dilated Cardiomyopathy and my EF was 7% and my last appointment at Harefield it was 36% and I am on increasing doses of drugs, I recently hit my target dose of Candesartan 32 mg but I am struggling with Bisoprolol and am taking 2.5 mg target dose 10 mg.

    From what I read Postpartum and alcoholic Cardiomyopathy are reversible and the doctors are right to increase your meds each visit until you reach your target dose.

    My Cardiologist has never told me not to fly and I am going to Costa Rica in 3 weeks and the doctors know and said no problem just be careful with dehydration.

    I can see you posted your comment 2 years ago and would be interested to see how you are now so look forward to your reply.

    Wally

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  • Posted

    Hi Sam I can see you made a post 2 April and you comment on water retention. are you taking diuretics, I take Furosemide and Spironolactone.

    Are you seeing a Cardiologist that specialises in Heart Failure, a general cardiologist would be inappropriate for our condition and with a severe left ventricle dilation you maybe should have had an ICD implant which is a type of pacemaker and I am surprised you are now in a wheelchair.

    It can take years to recover and a full recovery is possible and you are very young, I am 43 and I am treated as a young patient.

    I really hope you get back to me on this as no one discusses the condition with me and I feel a need to communicate with others with the same condition.

    I am seeing my medical team in 2 weeks at Harefield Hospital near London which is a highly specialist heart failure and Transplant clinic.

    Good luck

    wally

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  • Posted

    My story of cardiomyopathy is quite sad really as I only knew about it after seeing it on my mothers death certificate. So I'm so glad that people here are being successfully treated.

    Mum was being treated for leg ulcers which were not healing after two courses of antibiotics and dressings. She eventually had further tests at the hospital which showed she had fluid on her lungs. She also had serious fluid In Her legs up to her waist.

    She went to hospital as a referral and was told she had heart failure that could be treated with beta blockers and various other medications. She was told that as long as they could sort her legs out she would be discharged three days after she was admitted.

    She spent one full day in hospital and felt ok, especially when she knew she would be discharged as she hated hospitals like many of us. I left her after visiting hours at nearly 11pm and she was fine. My sister turned unexpectedly the next morning outside visiting hours and found my mother slumped on her bed with a bowl by her side, pepper grain blood splatters coming out of much and nose, barely conscious whilst the agency nurses were doing a handover. It was my sister who alerted them so that they got a doctor. They then moved her to higher dependency where I never spoke to her again as she was on a bipap machine and three days after that she passed away. On her death cert was idiopathic cardiomyopathy and hospital acquired pneumonia. I'm still stunned as she was meant to be discharged....we do not know what happened from me saying goodbye...see you tomorrow and my sister arriving unexpectedly and finding her just left in that state

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  • Posted

    Hi, I'm Nino from Indonesia. I'm 38 years old and this is my third year of having Ischemic Dilated Cardiomyopathy.and also diabetes type-2. I cannot work anymore. So, I decide to write a blog about my condition and things related to IDCM and diabetes. I hope I can contribute view information that might help.

    Emis Moderator comment: I have removed the link to the blog, if anyone does want to have the information please use the Message sevice to send links.

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  • Posted

    My mother sadly passed away on Oct 10th 2013 and it was quite unexpected as she was only supposed to be in hospital to stabilise her sodium levels which had become extremely low. She had been in bed unwell for a week previous to being admitted to hospital and we honestly believed she would be out after 3 days or so but she was in for 1 week before she passed. We requested a post-mortem as to us it was a sudden unexpected death, I have a feeling the hospital knew more than they were letting on as they didn't feel the need for a post-mortem.

    Anyhow she did have a coroners post-mortem and it revealed she'd died from Dilated Cardiomyopathy. Her lifestyle was pretty bad I had to admit, she did drink a lot of alcohol and we understand this could have been the cause of Mum's DCM but at the same time I'm concerned as I've read DCM could also be hereditary. My maternal grandfather died from a massive heart attack when he was 64, Mum was only 58. I'm now 37 and have issues with a racing heart which so far has been put down to anxiety and over treatment for my Hypothyroidism. My daughter is 14 and also has quite a fast heart. Is this something I should get checked out? We haven't yet received the full medical report in regards to mum's post-mortem so there may have been other underlying issues such as lung cancer, she also liked to smoke.

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  • Posted

    Yes definitely need to talk to your GP, tell him about family history and they should check yourself, daughter and other family members or refer for tests.
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  • Posted

    Hi I have just been told I have post partum cardiomyopathy I'm only 28 I was interested to hear if anyone have recovered from this! My daughter was born then that's when I had heart failure. I've since left hospital on medication I don't get breathless or anything.

    Zoe x

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