AF Association
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Feeling scared Idiopathic Dilated Cardiomyopathy

Hi Everyone

Its been some time since I last posted on here. Everything has been ticking along ok (pardon the pun). General health as usual has been a bit up and down. I was diagnosed with depression in August due to bullying and harassment at work. Consequently I left the job, I don’t miss the 75mile round trip each day

In December I developed a chest infection and ended up spending 10 days in hospital. Like a lot of us I had a couple of days off but went back to work. Christmas came and went didn’t feel brilliant but kept going Christmas is an important time to me. Second week in January started to feel worse peak flow was down and I was coughing which is unusual for me. So trip up to the dr. Another chest infection or maybe didn’t get over the first one. Steroids and antibiotics. A few days later and I’m worse not better, back to dr’s. I get admitted to hospital this time I’m in 3 weeks. Didn’t expect that one.

When I look on my discharge letter it states that I have had pneumonia. Whilst in hospital after numerous tests they decide that my heart problem may beaffecting my slow recovery. I’m now on the waiting list for a Mibi test it’s around 10 weeks.

I was not surprised that the heart was playing a role in this as I have not been feeling right for some time. Nothing I could put my finger on but was complaining of severe tiredness amongst other non specific things. I should point out here that I have multiple medical conditions and I have had several reactions and serious side effects including anaphylaxis from some of my medications.

What has surprised me is how I have reacted and dealt with the potential decline in my heart function. I’m not sure if I have seen my diagnosis written down before or if I’ve only noticed it this time. I have Idiopathic dilated Cardiomyopathy. As you do I have started to look through the Internet for information. I started seeing the words life expectancy and “ is Idiopathic dilated Cardiomyopathy terminal” now I’m freaking out. Can’t talk to the family as they are all worrying. I almost feel like I’m being diagnosed for the first time. I’m not sure nice I said this but was first diagnosed with Left bundle branch followed by total heart failure resulting in a pacemaker being inserted about 8 years ago.

I am feeling pretty low after the pneumonia the drs are saying my recovery could be 3 months. ,!! I just don’t know how to feel or think. I’m normally a positive person. I hate to admit this but I’m scared.

One thing I have decided to do as I’m currently between jobs and can’t work is look at ESA and see if PIP is a possibility. I also have 3 damaged discs in my spine.

Sorry for the long post

5 Replies
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Try to relax with it all i am no doctor but sometimes these things can be reversed with a heart healthy lifestyle anyway i hope all goes well for you..

You really need to hit a cardiologist with a heap of good questions..

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I think your final paragraph is a good idea and I hope you get help. I won't get started on my political views!

Apart from that what you need is someone holding your hand for a good long time, not surprising you feel so low. I can't say anything helpful but I can say you have my sympathy and best wishes for an improvement in your health 💕

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Sorry you are so low. I had DCM diagnosed in 2009 and after numerous cardioversion and 4 ablations for AF my heart has shrunk to normal and the function is only partially impaired and recognused as heart failure. A much better life expectancy than what I initially received. I dont know if that relates to you......

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Sherrill, some of your health problems I have no experience of so can't contribute anything meaningful. However, what I do have experience of is the lasting exhaustion after pneumonia. I went back to my GP six weeks after my chest infection last year because I still felt dreadful and he too told me it can take three months to recover from pneumonia. Until that point I had no idea that my 'infection' was pneumonia.

Of course your family are worried about you, but please don't work too hard at putting on a brave face and suppressing your fears at the cost of getting comfort from them. You need all the support you can get right now.

Please let us know how you get on. Thinking of you and hoping you see some improvement soon.

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Hi guys here is a little update. Still not been feeling to good, having breathing problems and so so tired. Saw an Astma Specalist Nurse for the the first time in years. She suspects I may have COPD. A lot of what she said made sense. So it looks like I have yet another condition to my list.

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