Heart Failure Treatment

[GoalAugust]

My husband has been diagnosed with HF, EJ 23%, left side of heart not functioning well due to scar tissue. He suffers from breathlessness, fatigue and lack of energy. He is still waiting for a cardiologist appointment but wondering if anyone has similar problems and what treatment they have received.

[Lezzers]

Hi Goalugust, my husband also has HF due to scar tissue & other issues caused by a heart attack. His EF was 30 so slightly higher than your husbands, but cardiologist are not usually too concerned about numbers as they're more interested in symptons. Breathlessness, fatigue & lack of energy are not uncommon in HF but can also be as a result of some meds. Which meds has he been prescribed? My husband has had a few of his tablets recently stopped as he has BP issues. He also has had an ICD fitted, has it been mentioned if your husband is being considered for one?

[GoalAugust in reply to Lezzers]

Hi, thanks for replying. He is on loads of drugs and his. BP is really low so I think the cardiac nurse will be changing the strengths etc it is only four months since his HA so no decision has been on his ongoing treatment yet. It has been mentioned that he may be fitted with a device. Apparently you can have all singing all dancing devices now but an ICD has been mentioned. Did the device help your husband? We live in Kent but it seems really difficult to get an appointment to see any consultant in this area, how about you?

[Lezzers in reply to GoalAugust]

Very early days for you & your husband and you're dealing with a double whammy, HA & HF. My husbands HA was in 1997 but HF diagnosis was in 2012. Unfortunately, it does take time to get meds right but you'll get there. We're very fortunate as we've never had any delay, we live in Cambridgeshire so it's a bit less populated. Have you looked at the website of tgecpatient led HF charity called Pumping Marvellous. Lots of info & support there. I also recommend their private Facebook group of the same name, lots of advice and support there as well. B

[GoalAugust in reply to Lezzers]

Yes all new to us at the moment and so frustrating to get any sort of help. I have been considering having him transferred to a London hospital. It is reassuring to know your husbands history as I have felt quite depressed about the future of my husbands condition. He used to be such an active man but now unable to done much at the moment, but one thing is that he is positive about trying to have a reasonable life. Pumping Marvellous was recommended to us by the cardiac nurse and I will have to look into the Facebook group. Thank you for your advice. It is a worrying and confusing time for us and any form of advice and help is really useful.

[Lezzers in reply to GoalAugust]

Hi, I posted a longish reply to you but it seems to have disappeared. If you have any questions, fire away we're all here to help. HF really only means his heart needs a bit of help pumping, meds, diet, lifestyle etc will help with that and there's no reason to think he won't live a near normal or even normal life span. There are people in this group who've lived with HF for 20+ years. I'm also aware of people who's EF is even lower than your husband and they're living near normal lifes, whilst acknowledging their limitations. And again there are others who have had a lower EF than your husbands and now have EF levels in the 30's & 40's. It will get better for your husband & for you.

[GoalAugust in reply to Lezzers]

Oh thank you, it helps when you say things like that. Since the cardiac nurse told us about his symptoms, I have quite depressed about the whole thing, especially when I see how it is affecting my husband. He has been through the mill, in hospital for a month, intensive care, lose a lot of weight as he has lost his appetite and lost his vitality. But with all your kind words, it has helped to be a bit happier about the situation. All we need now to be able to see a cardiologist for his future treatment. I just want to get the wheels in motion and put him on the right course for recovery. I have phoned his medical secretary so many times, I have managed to get a phone appointment on Monday where February was the first appointment they could offer. Thank you once again for your help.

[Lezzers in reply to GoalAugust]

Can you ask his HF nurse to try & hurry up the appt?

[GoalAugust in reply to Lezzers]

Yes I have, she has sent several emails but she said he is quite a difficult man to track down. At least we will have a telephone conversation with him on Monday so he may give us an insight to what he can do.

[Lezzers in reply to GoalAugust]

Good luck. I hope you can get something sorted for your husband soon. I forgot to say, avoid Googling HF, most of the info will either be out of date, completely wrong or just not applicable. Stick with this forum & the BHF, NHS & pumping marvellous websites, for accurate & up to date info.