Hi everyone I'm looking for advice from anyone who has DCM. I'm newly diagnosed and have also found out I have ventricular tachycardia. Still awaiting referral to community heart failure team so asking you lovely lot for your help. I don't know if how I'm feeling is what is to be expected with DCM . I have a heavy feeling in my chest and tender left rib cage and having to take very deep breathes to get oxygen into my lungs. I'm currently taking losartan and am starting entresto and bisoprolol in January.
Your advice would be greatly appreciated.
Thank you
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Familyk
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Hey I have this. Before diagnosis I was struggling to breathe, very short of breath. No energy and body was sore. I also had swelling everywhere, my legs, back and stomach. I was very bad to the point I couldnt walk or barely move. I drained 10litres of fluid once in the hospital. I was diagnosed in April last year. I have had every test possible, I have meeting with a transplant team and I have an ICD fitted. It's hard work but you will get the best support and always ask questions even if it's something little. Happy to help where I can if you have any other questions xx
I've not really been told anything which is frustrating. I'm scared to be honest with you. Hopefully entresto is going to help long-term. Just wondering if this is normal and what I'm going to have to learn to live with. Constant feeling of weight on my chest, its really uncomfortable. I feel like an old lady and I'm only 53 and not used to feeling so unwell.
Entresto is a wonder drug, or they say it's the gold standard of heart medication. It will help and if you can tolerate the higher doses it will help greatly. The heaviness will ease with the help of medication etc. Just take it easy and make sure you rest. I'm forever being told to slow down. I have good and bad days. It is scary but the heart teams are brilliant. I'm 36 and it can out of the blue. Xx
I'm starting on lower dose and then mri and echocardiogram to see if its improved. I had absolutely no idea I had DCM or VT until 8 weeks ago. I was absolutely floored by the results. I honestly thought symptoms was long covid.They have mentioned ICD but further down the line. Its the waiting between appointments that's so hard.
Do you work? I really hope you are ok. I feel bad for moaning now xx
I was diagnosed with DCM in 2020 and initially had issues with fluid retention and breathlessness. Since then my meds have been tweaked and I'm no longer retaining fluid (mine was on my lungs hence the heavy feeling and breathing) I'm on the middle dose of Entresto and other meds. I am not suitable for any surgical intervention will just be on meds but apart from having to slow down and rest more I'm fine. It's a journey we didn't want but there are so many ways to support our poorly hearts now. Chin up it will get better, it just takes a little while.
I have DCM, mild heart failure and supra ventricular tachycardia.
Before and during the early stages of my diagnosis (when my heart failure was borderline severe) I had a heavy winded feeling in my chest all the time, felt like I could never get enough air in my lungs and would regularly get palpitations. After I had been on my medication for about 3 months, I started feeling better.
Have patience with yourself, I know it’s scary and a lot to get used to but your body is also needing to get used to the medication as well.
Stay positive and, as you have done, keep reaching out when you’re feeling anxious or unsure 🙂
If you have any questions in particular then I would be happy to try and help.
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