Totally paranoid, please help! - British Heart Fou...

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Totally paranoid, please help!

Flower1312 profile image
34 Replies

Hi. My husband has been home two days after three weeks in hospital following a heart attack and several cardiac arrests. We nearly lost him. I have a broken leg which doesnt help but have loads of support from family and friends. After witnessing him having a cardiac arrest three times I am a bag of nerves now he is home worrying that something else will go wrong. He is a totally selfless person and doesn't always tell me if something is wrong. He has had a ICD fitted the monitor is by his bed. I keep worrying that it is not working properly , no one to speak to regarding this as its the weekend. Is this worry normal?

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34 Replies
NorthantsSteve profile image
NorthantsSteve

Hi Flower - your feelings seem perfectly rational to me. It's a huge shock for you (and for him) and the stress that you're under is going to have an affect on how you feel. I had a heart attack (so not cardiac arrest) and it took some time for my family to stop worrying (as it did for me). I'm certain the hospital wouldn't have discharged your husband unless they were sure he was going to be OK and the ICD is going to be reliably tested, too. It will get better over time. Look after yourself.

Flower1312 profile image
Flower1312 in reply to NorthantsSteve

Thank you for your lovely reassuring reply. X

Lezzers profile image
Lezzers

Worrying is completely normal. My husband had massive heart attack & cardiac arrest in front of me, very scary time, that was 21 year's ago. He was fitted with an ICD in 2012. It's very early days for you but take comfort from knowing the home monitor will download info to the ICD clinic every day & he's now being monitored 24/7, the clinic will automatically contact you if there are any issues. Also, cardiac arrest is very traumatic and often leaves those concerned with PTSD so do considering counselling for you & your husband. There is a closed facebook page called sudden cardiac arrest UK, name says it all. Lots of advice there for people who've had cardiac arrest/witnessed it or have done CPR. They also have the occasional meet up, they're having one in September this year. Last year they set up a GWR for the largest CA Survivors in one room, very emotional, supportive & informative day. Highly recommended you join their page. Their website is suddencardiacarrestuk.org Please let me know if there's anything I can help you with, walking around on eggshells is very normal but it will get easier x

Lezzers profile image
Lezzers in reply to Lezzers

Ps. My husband won't tell me if anything is wrong either, I do wonder if fear makes them keep quiet, the logic being if they don't talk about it then its not happening!!

Qualipop profile image
Qualipop in reply to Lezzers

Absolutely; it must be a man thing. Don't talk about it and it doesn't exist. My husband had a potential heart problem picked up at a pre op appointment for his hand.Saw the cadiologist who ordered a holter monitor but hasn't heard a word since and won't phone the consultant's secretary to find out and I can't as they won't speak to me. I have to asumethere's nothing urgent orthey'd have been in touch but he just doesn't want to know. He's the same with me. Once I'd sort of recovered from my heart attack he won't even listen if I have a problem. When I had it, he went to bed while the ambulance took me in. Ignore it and it's not happening.

Lezzers profile image
Lezzers in reply to Qualipop

Ha, I'm not brave enough to say it's a man thing!! But it is frustrating. My husband has unstable angina & the GP told him he must immediately call 999 when it occurs. So, one night, just dropping off to sleep & his angina flared up. Wouldn't call 999, went Dr's the next day & the Dr was actually shouting at him saying how stupid he was. Really, don't get why he would risk his health like that!! Have to say, I really did enjoy the Dr telling him off, he throughly deserved it.

Shar28 profile image
Shar28 in reply to Qualipop

Hi. My husband’s not good at chasing up appointments and test results himself and always gets me to do it. I’ve not had any problems in secretaries etc speaking with me, although I expected them to ask for written authority from him. Whether that’s because I spent so much time at the hospital with him when he was admitted as an emergency or because I go to all of his appointments with him and make written notes I don’t know. You could always try contacting them and seeing what response you get.

All the best.

SpiritoftheFloyd profile image
SpiritoftheFloyd in reply to Lezzers

Yes you're right it is a man thing.

A good friend of mine stopped being around at the end of 2014, whenever I rang him to suggest we meet up he was always apologetic saying he was meeting his son or his brother in law that day but never suggested an alternative date. Four months later I got a call saying he'd been taken into hospital with only a few weeks to live - pancreatic cancer. He died the following day before I could get to see him.

When I spoke to his son found out that when he'd ring his dad - got the excuse he was seeing me that day. Doctor hadn't seen him in the previous 3 years. Basically he knew he was ill but just went to ground - as you say if he didn't talk about it then its not happening. We've often thought about how much turmoil he went through knowing he was very ill but not confiding in anyone.

Since having my heart attack I've been nothing less than honest when I'm asked how I am. Your family and friends aren't asking about your health out of politeness but out of concern for your well being and recovery, and we owe it to them and ourselves to be upfront about how we're doing.

Lezzers profile image
Lezzers in reply to SpiritoftheFloyd

I'm so sorry to hear bout your friend. If it helps at all he probably didn't realise how ill he was. My mum had pancreatic cancer, most of her symptoms were niggling issues rather than feeling very poorly. Unfortunately, that's why pancreatic cancer has such a poor outcome x

SpiritoftheFloyd profile image
SpiritoftheFloyd in reply to Lezzers

Thank you. With pancreatic cancer the outcome is exceptionally poor and whatever his approach to being ill the outcome would not have been different. It's just very sad to think that he chose to tell no one about his decline

Flower1312 profile image
Flower1312 in reply to Lezzers

Thank you so much for your reply. It has really helped with all that useful information. I know in time things will get better. It is just a bit overwhelming at the moment. Thanks againx

Dolphin14 profile image
Dolphin14 in reply to Lezzers

Lezzers

My husband had two cardiac arrests one with me present at home where I initiated cpr. I suffer from PTSD from that event.

My husband had an icd placed and as someone else mentioned calls come in right away if there is an event.

I have no problem getting information. My husband didn't have to give permission. But this was years ago. My brother recently had a heart attack and surgery. It is in his chart that I can receive all information on test results etc. Most of his doctors call me directly first and then I relay messages to him.

Most cardiac patients experience denial. It's a frightening experience. I think with men they are ingrained to protect and provide for family. I think that explains the silence.. my opinion.

Please seek counseling to help you both through this. It will help you to get the feelings out. Don't bottle them up that's how you run into problems. That's what I did for years. Then I had a breakdown from holding things inside.

Wishing you both the best of luck.

Lezzers profile image
Lezzers in reply to Dolphin14

Thank you for your advice Dolphin14. This is flower1323' post but hopefully everyone reading the post will take on board all that you've said. It is a very traumatic experience & something that never really goes away but with time & help it doesn't consume you as much. X

Dolphin14 profile image
Dolphin14 in reply to Lezzers

Oh boy I do this all the time

I apologize flower1323

Thank you lezzers for bring this to my attention.

I will quickly post to flowers my mistake

Lezzers profile image
Lezzers in reply to Dolphin14

Dolphin14, don't worry bout it, I'm sure everyone will read all the posts. I hope you're doing well now x

Shar28 profile image
Shar28

Hello, my husband has a totally different condition to yours but I absolutely recognise what you’re saying and think it’s totally normal. As others have said it takes time but things will gradually settle. You’ll both become used to a new normal - not bad, just a bit different from before.

All the best to you both.

Flower1312 profile image
Flower1312 in reply to Shar28

Thank you for your reply. Its reassuring to know that others have got through difficult times. In time it will get better and we will reach our new 'normal' Thanks againx

Prada47 profile image
Prada47

Hello Folks

Can't speak for all men

But I didn't tell my wife when I felt a little Off, I think with me it's not so much don't want her to know, it's kind of don't want to worry her

Recently when I was a little Off I didn't tell her but she has a Woman's Intuition and asked me what was up, I just said feel a little Off. Before I knew it off we went to the Hospital

I was connected up to a monitor and put to bed in the Cardiac Care Unit I was going from Tachycardia to Bradycardia in a matter of minutes.

After this episode my wife has made me promise I will tell her when I feel Off. She said she worries more just wondering why I have gone quite for no reason than she does being at the Hospital with me.

So I think a lot of us men want to protect you ladies from worrying not so much not telling you to feel macho, more to try to protect you !!

Lezzers profile image
Lezzers in reply to Prada47

I do totally agree with everything you've said. I absolutely know when my husband is not 100% but he is definitely one of the strong silent types!! I think it's mainly because he's spent so much time in hospital he likes to ride it out in the hope it'll get better!! Just recently he was poorly with a chest infection & wouldn't let me call 111. I left it for bout hr then asked him if remembers what happened last time he was poorly....he immediately said call the helpline!! And your wife is totally right, us partners worry more when you try to protect us! I hope you're doing OK now.

Prada47 profile image
Prada47 in reply to Lezzers

Hello Lezzers

I have a stress MRI on Tuesday 0820 so an early start, no Caffeine for 24 hrs prior to the scan, so an 0820 start does mean I will be able to have breakfast and a coffee soon after the scan !!!

The MRI is to see what has changed since having my LAD stented last year, the stent was through a by pass graft so Cardiologist wants a look to see if the blood supply has increased !!

Since the stenting I have periods of Bradycardia with lots of ectopic beats which causes further problems with my heart rate. They will also get an accurate ef so They / I will see if the Entresto has improved anything. All in All though I am pretty good not worrying about the HF that will have to take care of itself lol

Best Regards

Lezzers profile image
Lezzers in reply to Prada47

8.20!! I hope you're not too far from the hospital. Please let us know how you get on with the test. My husband has an ICD check up at Papworth on weds & then seeing his cardiologist on Fri. We're hopeful he might be able to go on Entresto, his low BP has been an issue up to now & his nurse said, under NICE guidelines she would never be able to prescribe it for him, but apparently cardiologist can get away with things a bit more!

Love100cats profile image
Love100cats

This thread I really needed right now. My husband is like many of you describe. His heart attack was 30 years ago and I didn't know he had been having chest pain. I was with him when he had h.a. It's so scary! But he has not changed. It really is putting his head in the sand! When asked how he is he always says he's fine but he's not. Now he seems to be developing dementia and I have heart failure it's harder. But I no longer play guessing games. I allow him to take responsibility for his health. On the many occasions his heart has started failing I tell him to tell me if he wants paramedics. I no longer panic because I can't take it. He genuinely seems to believe that none of this is happening. I'm a need to know person but if I made him be like I am I think he would go into deep depression and I couldn't take that. Lots to sort out and it takes time! X

Flower1312 profile image
Flower1312 in reply to Love100cats

Hi. Its so difficult when men won't share how they are. I understand totally why you say that you have left it to your husband to take responsibility for his own health and no longer panic. Dont think I am there yet!! Yes we have lots to sort out but I believe we will get through this; hope you do too. Take care. Thanks for sharing your experiencex

Love100cats profile image
Love100cats in reply to Flower1312

We will get through it. Women tend to get on with it! One day at a time!

Lezzers profile image
Lezzers in reply to Love100cats

I'm sorry to hear of your problems love100cats. Has your husband been tested for dementia? My husband was tested last year as he was having memory issues. Simple test at the surgery, which showed there was perhaps something to investigate. Home visit from someone from mental health team who offered counselling to my husband, which of course he refused!! He was referred to hospital, more memory tests which led to a brain scan. Result was no dementia but mild cognitive impairment probably down to the brain injury caused by the cardiac arrest. Was told to do some brain training in the form of puzzles etc which that has made a big difference in his demeanour & he'll be retested every year. Everyone from GP to physiatrist was so supportive, friendly & kind, if you can persuade your husband to speak to his GP it will be worth it, even if they find he has dementia they can slow the progress with medication.

Love100cats profile image
Love100cats in reply to Lezzers

Thank you. I never thought it might be due to heart attack. He was really ill. Also good to know about mental health team. This is where this site is amazing. You get lots of bits of info that make the task easier to handle.

Dolphin14 profile image
Dolphin14

Flowers1321

I mistakenly posted to lezzers in response to your post

I'm grateful it was pointed out to me

I seem to do thus a lot.. gotta pay more attention. It's my focus issue.

Please read as I'm not sure if you get alerted to the posting.

So sorry

Flower1312 profile image
Flower1312 in reply to Dolphin14

No worries. Im new to this site so can see why its easy to reply to wrong person. I think we will get counselling. My husband is having nightmares where he feels he is all wired up and cant move. I 4hink counselling could help him with this. Thank you for your advice

Flower1312 profile image
Flower1312

No worries. Im new to this site so can see why its easy to reply to wrong person. I think we will get counselling. My husband is having nightmares where he feels he is all wired up and cant move. I 4hink counselling could help him with this. Thank you for your advice

Lezzers profile image
Lezzers in reply to Flower1312

Can I also say, make sure you also look after yourself. Us partners often get overlooked but we are as much as part of this as the patient. Always remember your husband is being very well looked after by his medical team but who is looking after you! xx

Dolphin14 profile image
Dolphin14 in reply to Lezzers

I so agree with this statement.

Flower1312 profile image
Flower1312 in reply to Lezzers

Thanks for that. I feel guilty that I cant look after my husband independantly as I broke my leg very badly 11 weeks ago. I can do a few things but cant move very quickly. I am unable to drive. Luckily my daughters live nearby to help out. I still wish though that it could me me taking him out in the car and sitting with him looking out to sea. That will come in time . . .

Lezzers profile image
Lezzers in reply to Flower1312

It will come in time & will be all the more special for it xx

Prada47 profile image
Prada47 in reply to Flower1312

Just curious which bit of Sea do you look out over ?

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