Jess was diagnosed with cardiomyopathy on Wednesday after being rushed in to hospital after collapsing at home. She was first treated for a substantial head injury. When they were investigating the cause of her colloapse they discovered the issue with the left ventricle of her heart. Her Cardio consultant agreed to let her come home to rest as she was very stressed in A+E. He has prescribed bisoprolol for 2 weeks during that time she should receive an appointment to go back for a stay of 24-48 hours for more tests.
My question would be how long should I stay at home with her? I'm off work, which is very unusual for her and may start stressing her a little as I try to stop her doing too much. However I feel it necessary at least until after she has the further tests and further treatment is confirmed. Any advice on her care while waiting on the appointment would be greatly appreciated as this is completely new to us and very daunting.
Thank you in advance
Dan and Jess
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JessandDan
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Hello Dan and Jess, welcome to the forum. You’ve both had a huge shock and it takes time to get your heads around what just happened, what’s going on now and what it’s all going to mean in future. In my and my husband’s experience of his emergency admission to hospital and coming home a week later after tests with a diagnosis of a Dilated Cardiomyopathy (DCM), it’s a scary time. But things will settle.
First of all -and this is much easier said than done - don’t spend every moment in a state of hyper-worry. It isn’t helpful and it makes things worse because of those extra stress hormones dashing around your body. The hospital wouldn’t have let Jess go home if there was imminent danger and they should have told you both what to do if she takes a turn for the worse. That said, call 999 if you’re worried it’s an emergency because the paramedics etc would rather come out and check Jess over to find it’s ok than not be there when desperately needed.
Secondly, be very careful with Dr Google. There’s heaps of info to be found but a good proportion is out of date, biased, plain old wrong and not applicable. Many studies were done on 70+ year old white American men with other conditions and on old generation medicines etc and Jess won’t fit that profile. Instead stick to NHS, NICE, BHF, Cardiomyopathy UK and the UK hospital websites.
If you’re on here I’m guessing you’ve found the BHF website but here’s Cardiomyopathy UK. There’s loads of clear info explaining types of cardiomyopathy, treatments etc and their nurse helpline is fantastic too.
Both you and Jess are going through the same situation from a different perspective. Patient and partner. It’s hard for each of you and neither of you will want to upset the other. And as a partner you can’t physically feel what Jess is physically feeling. My husband and I came to an agreement. He’d try to follow the guidance the medics had given him and not do too much (which is hard as you only know where the line is when you cross it) and in return accept that I’d worry and let me fuss over him!
When it comes to work, it’s hard to know what’s best. Are you able to go and keep your phone with you? Work shorter days? Have someone pop round to see Jess or phone her during the day? I’d suggest talking it through with your line manager to see what support is available, like Dependents or Family Leave, flexible working etc.
I’m sure others will be along in due course with their suggestions too. Let us know how things go, feel free to ask questions or even just rant!
Thank you for replying with so much information. Dr google 🤣, love that, never trust a word, always accredited websites for me. Thank you for mentioning the other website too, I'll have a look.
As for work, it's lucky I work for a small firm which a very good friend of mine owns, unfortunately I am a long distance (within uk) hgv driver. I normally go to work on a sunday afternoon/monday morning and return on a friday night/saturday morning. Knowing the job and how things can quickly change on the road worries me about jess' care if I did go back to work. We have 2 children aswell so she has alot on her plate when I'm not around. I worked that out this past week.
Once ongoing treatment is in place I'm assuming things go as close to back to normal as they can? The worry would still be there but atleast if I did get stuck out overnight it shouldn't be much of a problem.
Hello, things will settle with treatment. That’s not to say it’ll be exactly the same as before this diagnosis but it’s definitely not saying things will be worse. Just different. And you’ll adapt, as a family I mean. Please don’t overthink it all, it’s a gradual process with ups and downs. People call it a journey and I think it is.
Perhaps things like online grocery shopping deliveries (you can use Tesco clubcard points to pay for their service £16 of vouchers for 6 months if I remember correctly) would assist? And having handy seats/stools to perch on in the kitchen whilst cooking/ironing etc can make life easier. If you shout out on here with a post title for tips on making life easier when you’ve got kids of x and y ages I’m sure you’ll get loads of other ideas too.
Xx
Hello
I cannot give a better reply than Shar28 has already done
But what a lovely caring Husband you are
I am so sorry what Jess is going through as well as you as said partners feel it to knowing a loved one is not well
Jess sounds like a very Independent women and good for her and you are lucky in a way as when I have been having my heart issues I have done everything I can to get my Husband running after me
Maybe if you feel you want to be at home with her then tell her that you do but make a deal where you won't get in her way or try and take over what she sounds like a routine she has but ask her to tell you if she needs help
They are fantastic these Consultants they will soon have the issue sorted , I know it is hard not to worry but with you and them she is in really safe hands
Please keep letting us know how you both get on and if you need to talk , ask any questions members are just so helpful on here someone will always reply to you both x
Yes Jess is very independent and normally does everything as I'm normally hardly around because of work. I've covered, to the best of a man's ability (no where near her standards) everything Jess normally does. WOW and hats of to her is all I can say. Thankfully there's no argument from her about me wanting to do everything and give her time to rest. We have made a pact that tomorrow (sunday) we will work together doing things but she is to then give up if she feels tired or uneasy.
The paramedics, doctors and consultants were fantastic and I can't thank them enough for what they have done so far. I'm sure that after her appointment we will know more and have a better idea of what's going on and how to adjust.
Just some advice really as a married women a man will never be able to meet our standards of doing things so just be prepared to be told
Sounds like you have come to a great agreement
I know when I had my heart attacks the worry was the worst and then I had to have a triple Bypass and that was even more worrying , not that Jess needs this but I think my point is the waiting to find out that is the hardest
I will also say obviously there was not just me in Hospital waiting on results and plenty were walking out with smiles on their faces as the outcome was not what they thought or as bad so fingers crossed this will be the case for Jess x
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