Post HF diagnosis symptons

[Bigredhear]

Hi all,

2 weeks after Heart failure diagnosis I am feeling more positive, I'm waiting to be referred to cardio rehab which I'm assuming will help with exercise and what I can do?

I'm walking a bit every day to stay healthy and today played 10 holes of golf, I did feel a bit of pain/ache across my back which I never used to get, could this be the medication? I dont want to overdue it but really want to exercise

[Fortepiano]

While exercise in HF is good and I'm sure you'll soon be able to get back to your golf, I do think 10 rounds of golf when you have very recently had a week in hospital is pushing it.

Gentle walking is good but otherwise wait for cardiac rehab and be guided by them. Give yourself more time.

Do you know what caused your heart failure?

[Lezzers]

Completely agree with Fortepiano, gentle walks for the time being or you may end up doing more harm than good. You'll get back to normal exercise in due course

[Bigredhear in reply to Lezzers]

Hi all,

I played 10 holes not 10 rounds but I take your point about not overdoing it.

I've been walking a bit and that seems fine, in just feeling things that I wasnt before I started the medication.

[Fortepiano in reply to Bigredhear]

Sorry, I'm the one who confused holes and rounds- I'm not a golfer! Nevertheless golf swing and back muscles seems pretty related when you are recovering from illness.

Medications are enormously helpful in heart failure. None of the medications you've mentioned seem likely suspects. I still blame the golf and of course the fact that you are now hypersensitive to your body.

Rehab will make a lot of difference.

All the best

[Bigredhear in reply to Fortepiano]

Hi Fortepiano,

Thanks for the replies.

I am seeing the cardio nurse on Friday so will mention all of these things.

My fitness levels have definitely changed since I was diagnosed and put on the medication which I'm sure is normal given all of the sudden changes, I suppose over time I will get used to this, I generally felt ok before i went into hospital but i obviously had problems with my heart.

I will take it easy and try to be patient.

Thanks for listening to me moaning!!!!

[Fortepiano in reply to Bigredhear]

You're not moaning! It's a very stressful time early on. 40% is on the good side of lower EF and the meds will help too.

[IanMK]

Since you’ve only just been diagnosed it’s difficult to give any advice at this point other than gentle exercise and to review diet and lifestyle. Oh - and give Dr Google a wide berth. If stress could be a factor then I recommend avoiding sources of stress, too.

I assume you have started on a medication regime to protect your heart while potential causes of your HF are investigated. These can cause unwanted side-effects on their own, bu best persevere if you can. What is your EF at present? You have every reason to remain positive but you may be on this path for a while. It can take a while to go through the investigative procedures one at a time, then as each treatment is tried one has to be patient awaiting an outcome for each.

All the best,

Ian

[Bigredhear in reply to IanMK]

Hi Ian,

My Ef is was given as 40%, I am on bisoprolol, linsoprinol, spirolactalone and warfarin (not sure if all the spellings are correct).

I dont feel I have been given any comprehensive advice by the doctors apart from make sure I take the meds which I am doing every day.

I have cut my drinking down by about 95% and am eating much better.

I'm seeing the cardio nurse next Friday so hopefully will get more information

Life feels a bit on hold right now.

[Sunnie2day in reply to Bigredhear]

Pain is always worrying - I feel the slightest twinge and sit here thinking I'm ignoring something serious. Better now I know I can ring the nurse with even the most 'silly' question (she's SO patient, usually ) but...

But what is the worst for me really is the 'life on hold' part. I'm being fast-tracked (very fast according to just about every tech and nurse I've come into contact with so far) but I don't see the cardiologist until the 18th of June and so spend most of my day with that 'life on hold' feeling. I have a daily routine, and hobbies but the 'life on hold' thing is a constant floating unpleasantly just under the surface 24-7.

[IanMK in reply to Sunnie2day]

I don’t think other people understand the ‘life on hold’ thing. You just feel unable to plan and get on with your life. I had my pacemaker fitted 7 weeks ago after my heart issues began in summer 2017 and I feel that was when my life went on hold. Unfortunately, it has a big effect on my nearest and dearest too. I’m just trying to get my life moving again now but the big thing that remains for me is still being on my heart meds. Once I can come off those, as I’m sure I will, I will feel that my life is back on track.

Hang on in there and keep watching for the light at the end of the tunnel.

[Fortepiano in reply to IanMK]

While I understand your desire not to take medication, I think it's important to recognise that life does not have to be on hold if you take regular medication. Many people have to take medication for the rest of their lives, and yet lead a very fulfilling and happy life. The problem can be when people set up artificial barriers to happiness for themselves 'I will only be happy when' etc which become self-fulfilling.

My husband has taken numerous medications every day for over 20 years since his HF diagnosis and will do so for the rest of his life. He would die in weeks if he abandoned his immunosuppressants - but it hasn't stopped him leading a very adventurous happy and fulfilling life. I never took meds until I had my AVR - now I take 5 but my life is no less enjoyable.

I do hope that you will be able to come off your medications as you desire, but if by any chance you have to stay on medications it really doesn't have to be a barrier to getting on with your life and being happy.

All the best for the future

[IanMK in reply to Fortepiano]

In my case, it's not the medication that put my life on hold but wanting to get to the point where I had received treatment for my condition and had a fair idea of what the future had in store for me. I am fortunate in that I have received successful treatment I am now in a much better position and confident in my future. I will feel well and truly 'back on track' when - hopefully not 'if' - my cardiologist allows me to stop the medications. This has always been my goal. I don't appear to suffer from any significant side effects to my medications, just a few minor ones, but I would rather avoid self-administering toxic chemicals if I can.

Best wishes.

Ian

[Bigredhear in reply to IanMK]

Hi Ian

This is just the start of my journey and I dont know if I will ever be off the meds? I suppose if my diagnosis improves there might be a chance

As far as I know I will need the meds for a long time to stop my condition getting any worse but maybe lifestyle changes will help reverse the condition as well.

Its tough looking for answers that only time can provide.

Thanks

[IanMK]

I’ve been there. I know how you feel. Unfortunately there’s not much you can do to speed things along except do what you’re told and be cooperative. Make sure you keep well-hydrated. Spironolactone is a diuretic.

[Yasyass in reply to IanMK]

Why is spironolactone prescribed I have no swellings or high bp but prescribed it because they said had hf but took couple days made me feel nausea

[Skittler]

Be advised by the Cardiac Rehab team, they will tell you what is best. Yu will soon be able to get back to your golf, but don't push it too hard, too early.