Difficulty dealing with Heart problem... - British Heart Fou...

British Heart Foundation

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Difficulty dealing with Heart problems and related issues

Jackie213 profile image

I am new here. However have had a heart problem since 2013. I was told I had cardiomyopathy and after 2 weeks in hospital had an ICD fitted. I went home he day after my operation. I struggled to come to terms with what had happened (only being 44 at that time).

The following year 2014 I was diginosed with sleep apnea. Things started to go good. I returned to work, got married to my partner (who had been with me only a month prior to me having my hear problem). We were having holidays and life was brilliant.

In March 17 I started to get very out of breath, was off work for 2 weeks with a chest infection. This turned to pneumonia. I was treated with antibiotics, and returned to work after 6 weeks. 2 days after returning to work my ICD fired. Due to DVLA rules I was unable to drive for 6 months, hence I lost my job.

This was a big shock for us, and we had to change things quite a lot. In September 17, I suffered another chest infection. I was taken to hospital, where they told me I had COPD. The infection was bad. After 10 days I was sent home, however I had very bad fluid retention. 5 days later I was rushed back to hospital where I was told I had pneumonia again. I was again placed on even more antibiotics. Fluid retention was a problem, I was given water tablets, which helped till November 17, when it go that bad I was having daily infusions to reduce the fluid. This was ongoing till the 4 December when I collapsed. I was rushed to hospital blue lights.

I was in a critical situation. After lots of tests ( I was totally out of it) my wife was told I had contracted Sepsis. The family were all called to the hospital as they had only given me hours to live. I was transferred to end of life treatment, thus wad due to the heart failure, and then not going to treat me for the sepsis, as they said my heart would not cope. My ICD was deactivated.

My wife and daughter were not happy, and my wife asked what my heart consultants were doing, only to be told they had not been informed. My wife went to heart failure ward (where I had been having daily treatment). They advised her to go back to me and leave it with them. Well to cut a long story short, 20 mins later I was moved to CCU and treatments started. It was touch and go for 13 days, but I made it.

I am no way well. I have just been referred for a heart transplant. Have post Sepsis shock syndrome, get chest infections all the time, and struggling every day.

I have depression, and find it hard to come to terms what has happened. I have very bad flash backs, unable to do anything for myself. My wife is my career, and she is also finding things difficult. I am at a stage where I think I can no longer go on, I don't want a life like this, feeling so low all the time. I am 49 years old and feel 90.

I would love to feel normal again but something tells me this may not happen again.

Sorry for such a long message, but need to see if anyone else going through this as I feel very alone. My wife deals with enough...

12 Replies

Wow you have really been put through it no wonder you are feeling low I really don't know wot to say to u but keep your chin up I hope everything goes ok for you

That all sounds horrendous, I'm so sorry you're having such a tough time. Would some counselling at least help with the depression? Sometimes it's easier to offload to someone who's detached, rather than a partner or friends.

Very best wishes!

Hi so sorry for what you have been through it takes a long time after severe sepsis to not feel anxious, worried and no good to anyone. l know, like you l nearly died from it, l didn't have anything wrong with my heart before sepsis but it ate my heart valves, l had pneumonia and endocarditis. Now 18 months later after two emergency open heart operations five weeks apart l have a AVR, normal pacemaker and am on lifelong warfarin. l still am suffering with flashbacks and depression but it is slightly better. Talk to the sepsis trust or go on their website they really nice. lf you look at my posts maybe they may help, l am taking a break from posting but l will reply to you if you need my support. Please don't give up!!! Remember 44,000 people a day die from sepsis and we didn't. Take care, Sue.

Wow, you've really been through so much! No wonder you are finding it hard to come to terms with. I know transplant is not without its own long-term issues, but it could give you the quality of life you want, so please don't feel there's no hope of achieving that. Your own story shows how vital it is not to give up. (Bet you are glad of your wife's determination!)

I also have heart failure (diagnosed unexpectedly at 31) but have been lucky not to have any other major illnesses alongside it. I do worry about how my heart could cope with additional strain like that.

Hope you have a smoother road ahead of you now. Lots of love x

Hi I cannot imagine the trauma you are going through. As others have said counselling or a health psychologist may help. Try and focus one day at a time. There are a number of mental health helplines that you may access for immediate help MIND


Mental health matters


Also BHF has a great helpline.

Do take care. Sending love and hugs. Zena x

Hi I cannot imagine the trauma you are going through. As others have said counselling or a health psychologist may help. Try and focus one day at a time. There are a number of mental health helplines that you may access for immediate help MIND


Mental health matters


Also BHF has a great helpline.

Do take care. Sending love and hugs. Zena x

Sorry that you're having such a bad time, I can relate to some of your experience.I started with a heart attack aged 41, lots of probs since, but now I'm 66 , still here and enjoying life.Take heart and "dig in" see what happens in the future. If you get your transplant then you'll have a new lease of life. Wishing you all the best.

Like the others, I just don't know what to say about the horendous trauma you, your wife and family have been through.

And I agree, you really need someone to talk to about this. Someone totally unrelated to you so they can take a step back to really focus on where they can help you.

The trouble with being out of action on the way you have lived your life in the past. Is it makes you feel so helpless no matter how advanced your health issues are.

I know when someone says, it wont always be like this, you'll see. Because when you have your trance plant, you'll feel like a new man.

You've probs got all sorts going through your head about their positivity when you are feeling so low. There positivity may evan wind you up so you'll feel irritated and stressed. Because you feel so down and this so called better happy future everybody is telling you about, just seems totally impossible for you.

This is why you need to talk to someone, to help you cope with all the positivity of the people around you.

A councillor will help you to look at and understand the positive of your future. A councillor will help you to get the thoughts of given up out of your head. Then you may just find your health does improve along with the health of your family.

You'll be able to focus on the realistic capabilities you'll have after your trance plant. A strong mind can do a lot to help in this process.

Please don't give up, we are all thinking of you.

Try and find a hobby like reading, painting, sketching, online college or university course, etc anything to occupie your mind while physical is difficult. Something to take your mind away from your health issues. Evan if it is only for a short while.

Sending reassuring hugs, Jo xx

You and your wife have been through a lot. Maybe there are carers services that could support your wife. Google Carers UK. The Somerville Foundation are very good and have a counsellor you could talk too or go to GP for services you could benefit from. Maybe join a online mental health support group. I have not been what you have been through but have had heart problems since birth. I am now 56 and take one day at a time. I try to make the most of a good day. Hope you soon feel better ❤

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My word, you really have had a real bad run of it!

It must be so difficult, i’m in the early days of my cardiomyopathy diagnoses and will most likely have an icd fitted in the near future.

This site is amazing, there is such a diverse group of lovely people similar to one another all struggling in one way or another.

Use this as your tool to talk to others and get it off your chest (excuse the pun).

Hope you are ok, keep fighting x

Helen_BHF profile image

Hi Jackie213, I'm so sorry to hear what you've been through. As others have mentioned, the BHF helpline is always here if you'd like to chat to one of our nurses: bhf.org.uk/heart-health/how...

I really hope things improve and keep us posted :)

Hi, how are you feeling 2 weeks down the line from your post? l hope things are improving for you after the terrible trauma you have suffered. We are all routing for you, and send our sincere wishes for your recovery!!! Take care and stay strong x

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