HF diagnosis due to 2 leaky heart valves

[shwills]

HF diagnosed due to 2 leaky valves and largish ASD(whole in heart)

The percentage was 55% so not normal HF

So got the diagnosis last week after echo. HF nurse said it is due to 2 leaky heart valves( I knew I had one but 2 now) ASD largish which I knew about which has got larger So HF from a different way. Also saw one of my consultants at my heart hospital last week and 2 other appointments and The AF/Atrial flutter is now persistent AF and she was concerned, so loads more appointments and tests and possible other ops. My pacemaker is doing the job for the Brady and sinus pauses hurrah

The hole is caused by 4 ablations I have had for the AF obviously not worked

I am exhausted most of the time balancing work and appointments which I have very long journeys to. I can cope with these, HF nurse has put me on water tabs as fluid in abdomen so that is a bit easier

My problem is The exhaustion I feel all the time, HF nurse didn’t give me rehab, I do walk as much as possible, what can I do for the exhaustion

I also wonder if closing the hole in the heart would help

I want to feel more energised

Any help please

Thank you all

[Ianc2]

Your consultant is concerned so loads more appointments and tests. Progress - you are now in the system. Keep close to your consultant's secretary and keep a diary so you can record all the information that will be coming your way. Try and take a friend or a partner along with you when you go to appointments so you can discuss what was said at leisure.

Treat yourself gently, things are moving along and you will gradually make progress. Take care.

Ian

[Lezzers]

Did your consultant say you have preserved EF heart failure? Can the leaky valves be operated on and if so will that sort out your heart failure? Maybe something to ask your nurse/cardiologist about, you should also ask bout the hole in your heart. My sister has lived with a hole in her heart & a murmur since birth, she's now in her 60's but it's never given her any issues. It's worth having a look at the Pumping Marvellous website, lots of info there bout HF.

[shwills in reply to Lezzers]

Hi

No it’s not EF heart failure it is to do with the valves, HF can occur with heart valve disease according to My HF nurse and I have read this on BHF site

It’s all the other heart problems I have as well, AF for around 8-9 years but probably longer undetected, the AF is now persistent, so what with all of the problems I have a long way to go as lot of conditions to treat

I am just shattered all the time and getting dizzy spells so often and breathlessness, I know AF can lead to heart failure and valve disease can also as well as leaking valves can lead to AF so all in all they all create the same problems and I have them all

No wonder I feel like I do

Sorry just a bit down about it all and struggling at present, usually I am very positive but just getting me down a bit, I have 2/3 consultants and HF nurse so keeping up with appointments are hard.

The last consultant said they may be able to do something with my pacemaker for the AF let’s hope so

Thank you for your kind concern

[Lezzers in reply to shwills]

You've got such a lot going on, I wish there was something I could say that would help. I assume your nurse knows how shattered you are, your dizzyness etc. Is there anything they can tweak meds wise that could help alleviate some of the symptoms.

[shwills in reply to Lezzers]

I am only on warfarin and beta blockers at present Barts won’t give me anything else at present to much going on in heart think they want to just see what they

The consultant I saw last time, not my normal one of 7 years just said “ you have so much going on”

But I will be seeing my own consultant soon and other consultant for the valves and hole so it is a very fine balance I think they are walking

Me included!!

Thank you

[Ianc2]

Ask for a copy of your notes. If you things get too difficult call an ambulance, grab your notes and go to casualty. Hopefully you won't have to.

[shwills in reply to Ianc2]

Thank you yes I have been into A and E lots of times and I usually grab hospital letters etc as it does help

Problems arise because I am under St. Barts Hospital London and I live 75 miles from there and they just normally just do all the normal checks try to get me stable and then let me go, I have been kept not for 4 days earlier this year

Thank you

[eric179]

I also have AF and a leaking heart valve the Mitral valve

Found Magnesium helps..400 mg per day helps with fatigue

Give it a try, loads of info on internet

[shwills in reply to eric179]

Thank you for your reply

I have used magnesium on the past and it gave me an upset stomach

Which kind do you take and what dose?

Maybe the ones I took were to higher dose

Regards

[eric179 in reply to shwills]

Hi, Well Known Local Health Shop

Magnesium with Zinc, Take 3 a day to make up to 400mg approx

each tablet contains 133mg plus 10mg Zinc

Take over the day

[shwills in reply to eric179]

thank you will look into itRegards

[Peterpiper1 in reply to eric179]

Hi Eric is magnesium OK to take with bisoprolol do you know? I have leaky mitral valve and awaiting surgery at Papworth.. I do feel quite lethargic but still working.. Cheers

[shwills in reply to Peterpiper1]

Hi

I cannot take magnesium as I have tried again and they effect my warfarin and also give me upset stomach

So definitely can’t take them. I have tried them twice and always effect my warfarin my INR

[Peterpiper1 in reply to shwills]

OK thank you I might just give it a try and see how it goes

[eric179 in reply to Peterpiper1]

Hi,

I take magnesium and garlic tablet in the morning , and Bisoprolol 1.2mg plus

candesartan 16mg in the evening and i feel O.K.

Had a Auortic valve replacement in 2011

Now have a leaking Mitral valve and E.F. fraction of 35% and A.F.

Have been on a number of heart tablets that did not agree with me at all over the years

So i do get a bit out of breath, But take this in my stride

Offered Bloodthinners but decided against this

I am 74 yrs old and enjoying life , the trick is to be positive about life

Good luck