Hi all. I was recently diagnosed with a hole in the heart and heart failure and referred to a specialist at a different hospital for treatment including an operation. I totally appreciate it’s better for me to not be in hospital right now, but it seems I can’t even get a phone consultation with my new specialist. They seem to have lost my referral anyway and when I spoke to the specialists secretary last week, she was even quite rude to me and doesn’t want to take my calls. I have been so stressed out over this as I just want to speak to the specialist, as I was dropped this bomb shell and then left to it. I have so much other stuff going in that I know now is due to the heart failure, which I didn’t know was even part of the condition and the specialist isn’t even aware of. I’ve been lucky that my gp had now put me on water tablets as I was filling with water, but they said the specialist needs to sort the rest out. My husband is going to try the specialists secretary tomorrow and I just wanted to know if many of you were managing to at least get some phone consultations with your cardiologist???
It makes me so angry they can just leave the rest of us to deteriorate.
Take care and stay safe 🌈
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Rainbow619
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I can understand your frustration. I think contacting Secretary again needs to happen to say you understand an early appointment is unlikely but requesting someone from Cardiology call you or review your records to see if any medication can be prescribed to alleviate your symptoms and protect you as much as possible in the interim period. If your GP is unable to prescribe anything more than water tablets could they contact Cardio directly.
I would also speak with a BHF Nurse to talk over how you are feeling at the moment and possible self help measures.
Take care and also try some relaxation techniques to counteract the strain you are facing.
Both myself and my husband have tried again to get a phone consultation with both my original consultant and the specialist I was referred to and we have got absolutely no-where. However I did speak to the BFH nurse and found our conversation extremely helpful and has given me ways to monitor my symptoms and how best to cope with them. She also informed of of what would need urgent care. She also pointed me towards another charity - the Somerville foundation, who offer support specifically for congenital heart disease and so can give more specific support for my condition, unfortunately I’ve been poorly with a migraine the last few days so haven’t been able to contact them yet. I do feel a bit better having spoken to a professional and will hopefully feel better when I’ve spoken to Somerville. I’m still frustrated that we are being ignored and forgotten by the hospitals, but at least me mind has been eased a bit for now. I would definitely recommend the bhf nurse for advice and guidance if anyone is struggling.
I appreciate you letting me know how you got on. Like you I was really hoping you could have made progress in getting at least a telephone appointment arranged. It makes me feel angry but that is of no use to you. You and your husband have done everything in your power to get answers and gain support and thats a hard thing to do when you are stressed and not feeling good. Get as much rest as you can you will be wiped out with migraine and take good care. Take things day by day and hope you find some support from Somerville.
Thank you Nathan. All good advice. My husband is definitely going to try the secretary again tomorrow and I have now got the number for the BHF nurse. That was what I was looking for when I came across this support group. I will also call them tomorrow. I was also thinking about some relaxation techniques too. I’m sure it will all be fine in the end, I guess I just need some re- assurance and understanding of what I can expect.
Thanks Jo, I have been keeping a note of my symptoms and have been weighing myself, but not daily , so will also do that - thank you. Luckily, my GP has been fairly understanding, but there’s only so much they can do. I appreciate what you say about anger and maybe it’s more a frustration that we don’t seem to matter at the minute and that my life isn’t important to them and that really scares me. Hopefully I will get some answers tomorrow. Thank you and take care. 🌈
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