Recent Diagnosis

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Recent Diagnosis

Post by Rob01 »

It has been many years since I posted on this forum so I hope you are all ok. I am now 38 years old, with a loving partner and we have two lovely boys, aged eight and four.

I am posting in the hope by writing stuff down, I can start to come to terms with things. I am not seeking any sympathy or pity though.

I was rushed into hospital late October 2014 and stayed in for a significant time. My symptoms were breathlessness, insomnia, vomiting. The breathlessness was so bad, I could not even lie down. The paramedics arrived at my home and my heartbeat was at 215 (at rest, it should be circa 80. After intense exercise, it should be between 150-180). So they took me in.

I received many tests and bloods were taken. In short, I have been diagnosed with Primary Dilated Cardiomyopathy. This in turn, has led to Heart Failure. The former means my heart muscle is damaged beyond repair and the latter means my heart fails to function properly, and dumps fluid in my body. There is no cure. My life expectancy has been reduced by approximately twenty five years, so it is unlikely I will reach sixty. I am a permanent outpatient in the local hospital and have a permanent heart specialist nurse assigned to me, who I meet once a week. I have to take several stats every day (blood oxygen levels, weight etc.) and these are electronically fed to the NHS daily. I am now on a mountain of drugs every day and will be for the rest of my life.

Why am I writing this? I am still off work after six months and the consultant is refusing to let me go back yet as I am still very symptomatic.

I don't want my boys to suffer through this. My other half has been a rock though neither of us have come to terms with it yet. I am not sure how to get back to work, nor get on with a normal life. Any ideas?
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Re: Recent Diagnosis

Post by peecee »

Rob01, it’s good to hear from you after all this time! But it’s not good to hear your reason for visiting PP again...

You say you don't want sympathy etc., that’s fair enough. But don't feel it’s weak of you to accept people’s good wishes, interest and attempts at advice – people do care, and they do want to help – you will learn to filter out the occasional “aaaw, hun!”, and make the most of the genuine offers of help. :)

Practical stuff – the internet is both your friend and your enemy! I’m sure you’re finding out everything possible about your condition, the good stuff and the scary stuff. You’re also checking websites like British Heart Foundation for stories of people who cope with heart conditions (including yours) every day. I have a heart condition (not like yours), and I like this website for its practical advice and inclusion of everybody who has a tale to tell.

Since you were diagnosed, you have developed a hunger for life, a desire to keep everything as normal as possible for you and your loved ones, and a wish to protect them. Look; if the medics don't think you’re ready to go back to work yet, I’m afraid you have to listen to them and follow their advice. Make a conscious decision to calm down, look after your health, but play truant as much as possible with your better half (does she work full/part time? It doesn’t matter, jobs come and go – including yours! - but this is a very important time for both of you).

Rob, nothing’s carved in stone, medical science is moving ahead in leaps and bounds (that’s why I’m alive), and I am confident that you will do your homework and find plenty of positive information. You have LOADS of time to spend with your partner and children, but you have had a wake-up call, and you will do what so many couples don't do – make the most of it.

Shine your light and let the whole world see.
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Re: Recent Diagnosis

Post by snail »

Hi Rob

I'm really sorry to hear what's happened. It hurts so much when something so unfair happens to you.

I would echo Peecee's advice about finding a support group. Apart from the practical help and staying up to date with the latest medical developments in your area, there's something about finding others who are facing the same problems that makes you feel so much more normal and dramatically less alone.
These mountains that you are carrying, you were only supposed to climb.

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Re: Recent Diagnosis

Post by David020549 »

Sorry to hear of your problems, now you must accept that your lifestyle has changed and whatever your new limitations you must focus on what you can do. The condition will stabilize and enable you to have new interests and activities, try to fit these in with your family and their activities. Help around the house, with the kids, the garden but not exclusively, an outside interest will give them a rest from you and that is important, if your family see you happy and fulfilled they will feel happy. Support groups will help at the start, try to see them as a stepping stone to a normal routine and not as the only activity.
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Re: Recent Diagnosis

Post by Bel Bel »

I have RA, not life threatening and certainly not going to shorten my life by 25 years but it does bring reflection when you get a serious illness.
Being positive is really important and as already said medicine moves at a rapid pace these days and things can change.
What you need to do is look after yourself to the best of your ability.
Make the best of your situation and as David said enjoy your family and friends as much as you can.
I also agree self help groups and forums are really useful for giving ideas on how to cope, tips on equipment and accessories to make your life easier and just knowing you aren't on your own really does make a difference.
I know it's a cliche but there are ALWAYS people in worse situations. Try to take comfort in that.
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