Heart failure

Hi I am new to the group I’ve recently been diagnosed with heart failure and heart is only pumping 15-20% it’s hard to come to terms with at the moment as I feel I was let out of hospital with the they you go attitude with all these new pills to take and not given a lot of information.

[Border21]

Hi,how recent was it,as when I was discharged from hospital,a community heart failure nurse got in touch within a week and took over my care .

[Hidden in reply to Border21]

Hi thank you for your reply I was rushed into hospital on the 3rd October and discharged on the 10th hopefully the HF nurse won’t be long in getting in tough

[uzininemm]

Hello, when I was told, I was in total shock, I was told mine was 20% and I honestly thought that's it life as I know it over but soon came to the conclusion very quickly that I was in the best hands possible and I was going to make the most of the new situation.

On my last day in hospital I saw one of the heart rehab nurses, and within days of getting out of hospital I had a apt booked to see them the following week also I had been told rehab would be in contact.

I was discharged from the clinic after 2 weeks, but I have been told I can speak to them anytime. Rehab took sometime to arrange due to coming out of the pandemic, I am now in week 6 of 8 and loving it, (even though yesterday I nearly went to far, when walking at nearly 4 mph up a 5% bank) the staff are very good, even to the point I am going to join the gym they operate at, and they have said I can see them anytime they are there after the 8 weeks.

I know we are all different and I have previously suffered with mental health issues, but for some reason I treat this as learning and a challenge, I have said to myself it isn't what I can't do, but lets see what I can do and make the most of it.

Yes there has been times when my MH has dipped but since June when it happened, I have slowly built up to be able to do some gardening, (including cutting the lawns), walking etc and had a weekend away in Wales. Of course rollar coasters are out.

I wish you well, and hope you get the heart nurse and rehab soon.

[Hidden in reply to uzininemm]

Thank you so much for your reply, I to suffer with MH and on Effexor medication for this, I also take gabapentin due to being diagnosed with arthritis back in February, but your post is so inspiring and gives me hope.The hospital have said I would probably have 3-5 years left but new medication is trials are becoming available all the time but I am trying to look on the bright side of things and not think how much time I have left but to live everyday as it was my last and enjoy life as a 45 year old should.

I don’t wish harm on anyone but it is nice to know I have people who are in similar situations to talk to about this and I am so grateful to the hospital for the treatment they have given me so far 😊

[uzininemm in reply to Hidden]

Thank you for the feedback, braveoldsoul, whilst none of us look for thanks, when you know you have made a little difference and get one it means a lot.

You are not alone. Take care.

[MissisF]

Hi. Try looking on here at the Heart Failure guide on this site specifically for HF patients.. You’re not alone & there’s lots of useful support on here . pumpingmarvellous.org/ and in the BHF booklets. Good Luck!

[Hidden in reply to MissisF]

Thank you 🙏

[Curlyman83]

My ejection fraction was >20 in January - it’s up to over 40% now. I’ve moved from “severe” to “moderate” heart failure in the space of 10 months - things will improve, just try not to focus on the numbers…it doesn’t help.

Check out the pumping marvellous and BHF websites - they’re both very useful

[uzininemm in reply to Curlyman83]

Curleyman 83, it's people like you who inspire me.

[Hidden in reply to Curlyman83]

So inspiring thank you so much for sharing this with me

[Curlyman83 in reply to Hidden]

We should all be an inspiration to ourselves - we’ve gone through a lot and come out the other side 👍🏼

[Neenster]

Hi Hidden i am sorry you are going through this, it’s a difficult time but things wil get better. My husband is in a similar position, he was rushed to hospital end of June and told he had high rate AF and heart failure with an EF of 12% !! He is only 46.

He was assigned a HF nurse a few weeks after he was discharged and she has been brilliant. He speaks to her or sees her every couple of weeks and she is there if he ever needs to speak to her. She has been adjusting all his meds to get him feeling as comfortable as he can and so far he looks great and is feeling a million times better than he was. He is nowhere near the level of ‘normal’ that he was pre hospital but I see a big change in only 4 months. He has a follow up echocardiogram in November so we are hoping the EF has increased which would be a positive step forward. I really hope that you get a nurse soon and she can be as supportive as my husbands has been.

Positive thoughts and try to focus on each small step forward. Good luck.

[Hidden in reply to Neenster]

Aww I am so overwhelmed by everyone’s kind words I am so glad you are seeing improvements in your hubby this gives me hope

[Hidden]

Hello Braveoldsoul, I had breast Cancer 2013 and 2015 discharged with Congestive Heart Failure and I to was given all kinds of medications. My EF was like yours. I felt terrible and depressed. Didn't know what to do because I didn't know what to expect. So, I took the bull by the horns and decided to start researching my condition and checking all the medications that they gave me and realized some had sulfur in them. Allergic to any type of sulf(ites). My body reacts quickly because I have G.E.R.D. It is a change, but it is up to you how you will proceed from here. My cardiologist wanted to put a pacemaker in and I said "No". 3 years later I found another cardiologist who put me on Entresto which worked great. Now I am on Insulin and another heart medication. Pacemaker last resort. It's been a slow come back, but I am doing better than before. I had to learn to slow down, but I still don't want to. Thereis always hope over the rainbow. Have a Wonderful Day, Braveoldsoul. Take each day as it comes and don't be hard on yourself. You are never alone.

[Hidden]

Hidden thank you for your sharing I am so sorry you for what you have gone through but your kind words give me so much hope enjoy the rest of your day 😊

[Sunsetsandbeaches]

I’m so sorry to hear all you have been going thru. It’s nice to see positive upbuilding comments that can help you along your journey. I’m not sure if I missed it, but what was the cause of your HF at your young age?

[Hidden in reply to Sunsetsandbeaches]

Hi Sunsetsandbeaches they couldn’t find a cause so they are sending me for gene tests to see if it was hereditary.