In limbo

[Evbe]

It’s been a week since my diagnosis and I’m in limbo. A little verbal diarrhoea post coming, so apologies to those that read this 🙈

It still hasn’t sunk in properly and I think I’m still in denial, half expecting a call to say ‘Oh sorry, we got it wrong’!

I have sooooo many questions that I would like answering but no appointments booked for anytime soon! I had a letter through Friday for a Heart Failure Team Clinic appointment in October!!! Surely I am going to be seen before then?!

I know I have to have CT and MRI but nothing has come through for those yet. How long can these take?

I’ve felt proper dizzy today and not sure if it’s my meds kicking in after a week or tiredness from being back at work as a teacher and the worry of exam season being here.

And breathe!

[MummaSoap]

I really feel for you and I remember feeling similarly in the early stages of my diagnosis.

It’s sort of a grieving process in a way as you mourn your “old self” but there’s also a new you, waiting to flourish 🙂

When I had my CT scan it was during my hospital stay and then I was discharged mid Jan and had my MRI the following month (in a different county) but that was 2 years ago so I’m not sure how much it’s changed if at all.

Wow, October feels like a long time to wait - maybe try calling them to see if you can be put on a cancellation list for people who withdraw or decline the clinic possibly?

It could be an amalgamation of things but just listen to your body and allow it to set your pace for a bit. Also, please know that you’re not alone!

Please let us know how you get on over the coming weeks.

Best wishes

Soap 🧼

[EU95PTM]

It’s really really early early days so it is normal to feel in limbo. I’m a bit older than you (52) and was diagnosed with HF after a big heart attack a year ago. I’m still trying to get my head around it, it takes time. I am still grieving my old me and gradually coming to accept my new normal.

I had a CT scan during my hospital stay and had to wait 8 months for the MRI and I have never been referred to a HF clinic. What has been a lifeline is the Pumping Marvellous charity. If you haven’t already, do check out their website and join their FB group. They are extremely knowledgeable and supportive group and I’ve learnt so much about my condition and the experiences of others.

[Prada47]

Hello try not to worry you are in the system and these things do take time, But HF is a long term condition and you will always have it !! Just go and see the HF Clinic they are experts in managing this long term condition. When I was given the HF booklet 8 years ago I read the piece around Palliative Care and though oh my God the end is neigh 8 years on and I manage my life just like I used to prior to Diagnosis. OK sometimes things are a little difficult at times, just as they are for thousands of other people with different Medical Conditions.

With the correct medication things do get better and hopefully in a few months you will wonder what all the worry was over.

Take Care