Breathless & weak from Dilated Left Ventricle and Atrial Fibrillation. Can I change this?

[FeltPen]

Hello,

I was diagnosed with a Dilated Left Ventricle and Atrial Fibrillation in 2014 at 38. I was prescribed Carvedilol 3.125mg twice daily, Ramipril 2.5mg daily, Apixaban 5mg twice daily and Furosemide 20mg daily, which I have taken ever since.

Ever since I started on these meds I've felt worse than I ever did before I started taking them, but I assumed that this is my life now and this is the way it has to be. My main issues are losing my breath under even the smallest amount of exertion and a huge loss in strength (which I didn't have before I started medication), even something as mundane as changing a lightbulb or climbing the stairs can be very tiring. Fortunately I am still able to do my job.

Whenever I see my cardiologist he says that he cannot change my prescription as I already take such low doses of each medication. I see him once a year (after an echocardiogram) and he always says that I am doing well (ie. no worse), which I assume that I am, on paper, as it were. But I generally feel pretty bad, health-wise. I've always taken what he says as Gospel, but having found this forum I am curious as to what other people's experiences are? Is there any way to improve my lung function and to regain some of my strength?

Am I correct in thinking that the medication that I take slows my heart down in order to give me an increase in quantity of life, but at a cost to the quality? I wonder if I were to cease my medication would I feel better, albeit at the cost of a shorter life span?

Any thoughts or information pertaining to similar experiences would be greatly appreciated.

Sorry if I sound whiny, I realise that there are many people far worse off than me, but I feel as though the last nine years I have become stuck in some kind of highly fatigued limbo.

Regards to All,

[santino44]

Providing a link which may prove useful. Looking at your medication have you gained weight since your diagnosis? if so have you got a BMI below 24.9 How is the Furosemide 20mg daily working for you?

Heart requirement for oxygenated blood from heart Ejection fraction of 50% necessary With Afib it does miss a beat.

nhsinform.scot/illnesses-an...

[FeltPen in reply to santino44]

Hello,

Thank you so much for taking the time to reply to me.

No, I have had no change in weight (I weigh about 9 stone and am about 5 feet 8 inches tall).

My ejection fraction is 43%, blood pressure is generally around 95/60.

I eat a vegetarian diet.

Apparently I have a bicuspid/leaky valve and some regurgitation of the blood, back into the heart chamber.

I do not enjoy taking the Furosemide, because I have to go to the bathroom often, but I understand that is the whole point of it! But I have never had fluid retention or swollen ankles, so sometimes wonder if I even need to take it? I always feel dehydrated, but then I tend to drink less, so that I won't have to worry about finding the nearest lavatory if I'm not at home.

[santino44 in reply to FeltPen]

I note your low blood pressure 90/60( Hypotension) rather than Hypertension ( above 140/90) Which is more the case with Afib.Your EF is mildly reduced I'm aware of people with a EF @20% still managing to work, My last Echo showed a EF @ 30% what works for me is physical activities/excerise.

Hear what you say about getting up in the night have tried to have no fluids after 5.00pm but still up in the night.

[FeltPen in reply to santino44]

Well my job gives me a reasonable amount of exercise, but the problem for me is the loss of breath upon exertion, which in turn makes exercise more difficult. I am hoping that a change in medication will help me.

[KIMMY60]

Ask for a second opinion of your medication, it may be that a different tablet may make you feel better. Or maybe they could take you off some medication with supervision checks, you need to speak to a specialist not just the GP

[FeltPen in reply to KIMMY60]

Hello,

Thank you so much for taking the time to reply to me.

Yes, I think that you are correct. I have an appointment with my cardiologist in a couple of weeks (first time in over two years), which is why I decided use this forum to gather more information regarding my condition and other peoples experiences of similar conditions.

If he is not willing to make any changes to my medication I think that I will have to ask for a second opinion.

[FeltPen]

Hello Anne,

Thank you so much for taking the time to reply to me.

I am due to see my cardiologist in a couple of weeks, which is why I thought that now would be a good time to gather more information regarding my condition and other people's experiences of similar conditions. That way I can go in and perhaps make some suggestions of my own. As I said though, I have always taken what he says as the bottom line, so to speak. I've never dared to question his opinion before. It just seems ironic that I have felt worse ever since diagnosis and subsequent medication.

I don't have a cough, but it does sound as though maybe the Ramipril could be an issue for me, regarding my lung function.

I have bloods taken approximately once a year to check iron levels etc. As far as I'm aware they are OK. (Nobody has told me otherwise).

Yes, sometimes I can feel my heart 'bouncing' around in my chest, a bit disconcerting to say the least!

Coincidentally I saw my GP yesterday, as I am having trouble getting rid of some nasty cold/flu symptoms (nearly 4 weeks now) and it seems to be exacerbating my breathlessness and fatigue. He is sending me for bloods before my cardiologist appointment, so we'll see what that shows up.

[mariyn]

It might be worth mentioning your low blood pressure to your gp , my husband who is on similar medication has a blood test at our surgery every month Best Marilyn

[FeltPen in reply to mariyn]

Hello Marilyn,

Yes, I am seeing my cardiologist next week and will definitely be mentioning the blood pressure.

Kind regards,

[FeltPen]

Yes, I really think that a change in medication is the best way forward.