Who understands heart failure?

[BB99]

My heart failure is class 3 going on 4. Nothing happening is unexpected but it has all come a bit sooner than I thought it would. Talking to family and friends is difficult. No-one wants to accept what I know to be inevitable and I don't think they understand my episodes of anxiety. Having not seen a cardiologist since before lockdown I have an appointment in August. Does any of this sound like other people's experience?

[Lezzers]

Hi BB99

I'm sorry that you're struggling with your heart failure, my husband also has severe HF. He was so very poorly last year, though is doing better so far. He's had to stop taking a number of his heart meds as they were having an adverse effect on him. He also has severe kidney disease caused by his meds. Unfortunately there are no more magic tricks in the box for him, his cardiologist told us last year that the aim is to keep him alive for as long as possible. I assume you're in a similar position?

Is there anything in particular you'd like to talk about? I can give you details of a dedicated HF support group run by a HF charity, there will be hundreds of people there who know what you're going through & will be able to support and advise you.

Please let me know if you would like the details of the group, also feel free to private message me if you would prefer

[BB99 in reply to Lezzers]

Thanks for your reply. I'd be very grateful for details of the support group. Robert

[Lezzers in reply to BB99]

It's a Facebook group which is run by the UK's leading HF charity Pumping Marvellous which is recommended and supported by cardiologists & HF nurses not only in the UK but around the world. I've posted the link below, if you don't do Facebook the pumping marvellous also have a dedicated website that has a chat facility so you can talk through any concerns, worries etc with HF experts, though I think this is a 9-5 weekday facility only, but please check out the very informative website, I've also posted the link for that below.

Good luck

facebook.com/groups/pmhelpf...

pumpingmarvellous.org/

[Pubman in reply to Lezzers]

Hi. My husband is in the same situation. He had mitral valve replacement two years ago but had already been diagnosed with HF a couple of months previously. After surgery he started to make a slow recovery but for the last few months is struggling with fatigue and breathlessness. They keep changing his meds as his kidneys are now being affected. If you could let me have the details of the HF group I think that may help him. It's starting to get him down now which is totally understandable.

[Lezzers in reply to Pubman]

Hi Pubman

I'm sorry to hear about your husband, I've posted the links below for you.

My husband also has severe kidney disease, unfortunately it is the downside of some of the heart meds. His fluid retention was really bad earlier this year & it was concerning his nurses as it was proving difficult to remove it because of his kidneys. Eventually it was decided to control the fluid rather than keep trying to remove it & that seems to have worked so far.

The support group is also there for the partners/carers of people with HF. You might want to join the group as well as your husband, it's a great support for 'us significant others' as well. It's often forgotten that we too are impacted by HF.

Good luck

facebook.com/groups/pmhelpf...

pumpingmarvellous.org/

[Pubman in reply to Lezzers]

Hi. My husband is in the same situation. He had mitral valve replacement two years ago but had already been diagnosed with HF a couple of months previously. After surgery he started to make a slow recovery but for the last few months is struggling with fatigue and breathlessness. They keep changing his meds as his kidneys are now being affected. If you could let me have the details of the HF group I think that may help him. It's starting to get him down now which is totally understandable.

[BB99]

Thank you very much. I'll take a peek on Facebook now. Best wishes to your husband and you.

[Lezzers in reply to BB99]

Thank you, living with HF is tough as you no doubt already know. Best wishes to you too.

Ps: if you have any problems joining please let me know so that I can sort it out for you

[JCDBARBRIDGE]

hi sorry to hear about your situation. I can empathise somewhat, I have heart failure, ICD fitted 24 April and recently had a breakdown. The medical side has mostly been good however the mental welfare thus far lacking. I elected this last week not to join a class, mainly as travelling to the location is difficult and I am unsure of the mix of people and I am not ready to be open to people I do not know. It means I will work at home with a manual and a regular support call. I am speaking with my GP on Monday regarding a joint care plan so will see how that goes. I have just completed a HOD survey which forms part of my program. Let’s hope you can move forward, happy to share my journey if can help in some small way

[Danceawaytheblues in reply to JCDBARBRIDGE]

Sending you love and best wishes. Marianne. x

[JCDBARBRIDGE in reply to Danceawaytheblues]

Thank you

[BB99 in reply to Danceawaytheblues]

Thank you Marianne. You're very kind.

[polenta]

Its been a long time since you saw your Cardiologist? Hoping that maybe he can help you get on the right track and maybe turn your HF around or atleast get you stable. There are advances in medications for HF and maybe your Dr. can try a new med that might actually strengthen your heart. We are all heart warriors and with the advances in medicine, you should never lose hope. Let us know how your upcoming appt. goes, HUGS

[BB99 in reply to polenta]

I'm pretty sure there's not much that can be done other than perhaps adjusting my medication doses. Fingers crossed though.

[Deejay62]

So sorry to hear what you’re going through. That’s a long time not seeing anyone. It must depend on where you live because during lockdown I had heart failure nurses visiting me doing loads of checks at home , which don’t happen now. I also saw my heart failure cardiologist every 6 months by phone and the next 6 months in person. I’m still seeing them every 6 months. I hope once you get back in the system you will be seen more often.

My children were in denial so now I invite one of them, the most mouthy one seems to want to do it, to my appointments so they can have an understanding of what’s going on. Also it helps me to ask questions and put across my worries to HF doctor and have it relayed back in the report the way it was said. So if you can, I know it’s not possible for everyone, try and take someone to your appointment with you, and take a list of your questions, worries etc.

All the best

[BB99 in reply to Deejay62]

Thank you. I have a sister-in-law who has offered to come with me. I might ask her to. I already have my questions ready.

[Ennasti]

I feel deeply for you. My mother passed away from heart and renal failure, and she never stood a chance. She suffered through three cardiac arrests before ever seeing a cardiologist. During the third one, the ER doctor urgently asked for her cardiologist’s name, and I had to admit she didn’t have one. His horror was understandable, and I now fully comprehend why.

Her condition was genetic, and I have it too. However, unlike her, I receive such exceptional care from the medical profession that it makes me feel almost guilty, though also profoundly grateful.

I’m sharing this with you because, looking back, I realise I didn’t truly grasp my mum’s journey. I experienced it through the eyes of a daughter. Now, I wish I could turn back time, to fight for her and her right to proper care, no matter how flawed the healthcare system was. You shouldn’t have to wait so long! Life is worth living and fighting for. I sincerely wish you the very best on your journey.

[BB99 in reply to Ennasti]

I understand people not wanting to hear the truth but it's all just bit overwhelming sometimes. Today's a good day though. I'm taking things easy and my biggest job is to decide what to have for lunch.