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Cause of breathlessness

Festie profile image
23 Replies

I wasn't quite sure which area to post in so here goes,I have COPD stage 4 and AFIB. I recently had a stay in hospital with pnuemonia in both lungs. I'm pretty sure the fluid on my lungs was caused by the AF because none of the sputum samples they took detected any sign of infection. I struggle to breath at the best of times and my cardio nurse said, after a scan and a 24 hour monitor, she wanted to up my dose of Digoxin, I am already on 10mg of Bisoprolol and 125mcg of Digoxin, they want to double it to 250mcg. I'm worried it's going to make my breathing worse, if my heart slows down more. I used to be able to walk round the shops and do a bit of gardening but now I can't walk 10 yards without having to stop. Also get terribly breathless when I bend over to do anything. Is there anyone going through the same thing that could offer me some advice. Thank you so much if you have took the time to read my post

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Festie
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23 Replies
judg69 profile image
judg69

What is your oxygen level , especially when you are upright and walking . You should get it checked asap as it is quite possible you require oxygen , at least when walking. Best Wishes , judg69

Festie profile image
Festie in reply to judg69

Thanks for your reply judg69. I have an oximeter and it is normally 94-95 whilst I am resting but not tried to use it when walking. I will give it a go and see what the reading is. That's a good idea, thankyou.

skischool profile image
skischool

Festie,it's easy to say but probably harder to organise with the Nhs these days but your cardio team and your respiratory team should be talking together and discussing the best way forward in your treatment,i know nothing about AFIB or heart conditions but i can see that the treatment for both needs to be joined up or one could detriment the other.Wishing you the best in finding a solution and my only recomendation would be for you to aim to try and keep your 02 sats within the recommended 88-92% safe levels without compromising your heart condition.

Ski's and Scruff's

Festie profile image
Festie in reply to skischool

Thankyou skischool. My treatment is with 2 separate health authorities. Perhaps I could get my GP to establish some kind of link. Thankyou for your reply.

Lynnetp profile image
Lynnetp

Morning Festie,I know we’re all different, but reading your post struck a chord with me. I’m also stage 4 COPD and recently had a very scary episode of almost total breathlessness, masses of fluid in the lungs with no infection & a stay in hospital. The breathless feeling sounded very similar to what you describe & almost didn’t feel like my COPD. After 3 admissions, CTs for suspected clots on my lungs, masses of nebulisers and cortisone, which did nothing & almost felt like it exacerbated things, blood pressure crashed but heart was racing & they finally suspected heart failure and so put me on bisoprolol and a diuretic...a water tablet.

This has been a game changer for me. I was barely sleeping & waking for a couple of hours every night to clear fluid from my lungs, only to repeat the process in the morning. Now, after taking the water tablet, I no longer have masses of fluid. I sleep through the night, (apart from the usual tiddle around 3am!) I can walk quicker and longer. My daughters commented that I now stand upright as opposed to hunched over. I just feel a whole lot better than I have in a long time.

After seeing a cardiologist, he confirmed that I don’t have heart failure, but said it’s a good idea to keep taking the water tablet as it’s had such a profound effect.

I don’t know if this sounds similar to your situation? But thought I’d share my experience just in case it could help you or anyone else. Wether it’s feasible. medically possible or advisable to take a water tablet to help our dodgy lungs...

Lots of love

Lynne xx

helen1946 profile image
helen1946

yes my husband has the same conditions the digoxin doesn't make the heart slow it's the bisoperol that does that digoxin makes it pump better so will help your heart pump round the blood in your body which in turn helps stop the fluid building up.no one should tell you whether to take medicine that is your decision .but you are monitored when having this drug.

I agree with helen1946. I have dilated cardiomyopathy and take the same dose of digoxin as you. It is to make my heart beat better, not to slow it down. I take bisprolol for that.

Debs_ALUK profile image
Debs_ALUKPartnerBritish Lung Foundation

Hi Festie. We have experienced nurses who can answer questions about breathlessness and can advise you on questions to ask your Health Care Practitioners about oxygen. Give us a call at the Helpline if you would like a chat. 03000 030 555Take care

Debs

Alberta56 profile image
Alberta56

Best wishes for a speedy answer to your problems.

Grayjay profile image
Grayjay

Hi, Like you I have end stage COPD, severe heart failure and Afib. I have Ambulatory O2 which helps a lot. I take loads of meds including 2×Water tablets in the morning,.Recently I have had more shortness of breath and have started taking an extra water tablet at lunchtime. This has improved my breathing a great deal.I can sleep better at night and don't wake up gasping for breath anymore.(touch wood). It's worth talking to your GP about going on water tablets, you may be on them already so consider an extra one. It's an awful situation for us to be in so we have to try different things that suit us. Good luck and God bless.

Gladwyn profile image
Gladwyn in reply to Grayjay

Can I ask how many mgs of diuretic you are on Grayjay? I’m on 80mgs but still finding I’m waterlogged by the end of the day and struggling to breath. I’m glad to read you’ve sorted out your problem. 😀

Grayjay profile image
Grayjay in reply to Gladwyn

Hi, Wow, 80 mgs seems a lot but suppose it's of what?You may be on something different to me. Including the extra tablet my dosage is 3 mg of Bumetanide, which is nearly the Max suggested by my GP. I can take up to 4 otherwise it can cause kidney damage. I think I'm due for a blood test to monitor it. X

Gladwyn profile image
Gladwyn in reply to Grayjay

Ah.... I’m on Furosemide. I haven’t heard of Bumetanide. Thanks for replying. 😀

MoyB profile image
MoyB

Before I read any of the replies here, my first thought was 'diuretics'! They are not for everyone, I know, but for some people they can work wonders.

They discovered a lot of fluid in my husband's lungs when he had an MRI for something else. He has since been diagnosed with heart failure due to needing a valve replacement but he has no lung issues.

He suffered the breathlessness like you do ie suddenly unable to walk far without becoming breathless and bending over was a big problem to him. Alongside other medication for his heart, he was prescribed Furosemide which helped to reduce the fluid and then Sprironolactone which helped reduce it even further. The last time he was seen by the heart failure nurse she was pleased to report that there was no fluid in his lungs.

Shifting the fluid has made a huge difference to him and, whilst he still gets slightly breathless, it is not as severe. Bending over is still a bit of a struggle, and would probably be less of a problem if he could lose the tummy fat, but on a day to day basis he is doing much better than he was.

It may be worth asking about diuretics - they can only say 'no'.

Best wishes, xx Moy

Festie profile image
Festie in reply to MoyB

Thanks for replying MoyB. I do take Furosemide and spiralactone but before Christmas I missed doses for about a week as I needed to get out and about, as you do close to Christmas...ended up in hospital with oxygen of 68 and both lungs full of fluid. I take the dueretics religiously now as I know the consequences of missed doses..feel as though I don't have much of a life as I can't get out at all...either I can't breathe or I need a wee!!

You take care and stay safe

MoyB profile image
MoyB in reply to Festie

I didn't realise you were already on diuretics - sorry, I was teaching my grandmother to suck eggs! Lol!It must be so difficult for you at the moment and I wish I had some good idea to offer or, failing that, a magic wand.

In the absence of both, all I can do is send you virtual hugs and best wishes, and hope that someone soon finds a way of helping you to get back a better quality of life.

xx Moy

Marlsboy profile image
Marlsboy

I was in more or less exactly the same position as you until very recently. I was even finding it difficult to do simple tasks like making a cup of tea. I was convinced that the problem lay more with the AFib and finally after months of persistence on my part, got someone to listen. In the last month I have had a Pace and Ablate and things are looking very different now. All my sats have improved dramatically, I can breathe, I can perform many tasks again (even changed my own bed!) and things will only get better. I now only take one pill (Rivaroxaban), which in turn has resulted in the oedema in my legs disappearing as it was apparently due to the drugs. Have to build up my strength and stamina now, which sadly deserted me due to not being very mobile.

Make sure all aspects are investigated thoroughly as things do get missed. My only regret is that no-one listened to me earlier as things should never have deteriorated to the point they did. Good luck.

Festie profile image
Festie in reply to Marlsboy

Thanks for your reply Marlsboy. May I ask how long after your diagnosis did you have the pace and ablate? I'm really fed up of tweaking and fiddling with doses of beta blockers and having to take dueretics all the time. Feel like I have no life and it's been going on a long time. Take care and stay safe.

Marlsboy profile image
Marlsboy in reply to Festie

I was diagnosed with AFib about 8 years ago after a routine ECG. I took Bisoprolol for 5 months despite my complaints about breathing problems, whilst I waited for an appointment at the AFib clinic. They immediately stopped them and put me on Diltiazem, which I have taken since. I was discharged from clinic back to the care of my GP. I was diagnosed with COPD, due to what the Bisoprolol had done to my lungs, and then could not get past the 'label'. I eventually got my GP to refer me to Cardiologist. He did an Echo (normal) and a 24hr ECG, which recorded 1400 episodes of AF in 24 hours! He referred me to an EP after 5 months, July of last year. The EP rang me for a quick chat and suggested that the Pace and Ablate mat be the way to go, but he wanted to be sure that it might help, so further tests. I had a 5 day ECG and my next 'telephone appointment' was with a nurse specialist. I had 3 appointments in sucession cancelled and it wasJanuary before I eventually spoke to someone. I told them how I was rapidly deteriorating and she said they would put me on the waiting list, but had no idea how long I might have to wait because of Covid. I decided to invest in a Kardiamobile at this point. After a few days of trying I managed to speak to the AF nurse again and told her how ill I was feeling. She suggested that I went to have another 24 hour monitor fitted, but I said I was not well enough to go, and would it help if I emailed a copy of the 6lead ECG from the Kardia. She reluctantly agreed and said she would show it to the EP and get back to me, probably on the following day. Within the hour I had the co-ordinator on the phone booking me in for a Pacemaker to be fitted in 3 weeks, with the ablation to follow 6 weeks later. I also received a letter of apology from The EP!

In the event I was taken into hospital after just 1 week and the Pacemaker was fitted whilst I was in. Thinks improved but only slightly and I was admitted again 3 weeks later so the ablation was done early, after 4 weeks.

I can't help feeling that if I had made more noise and fuss earlier, and get someone to listen sooner, then things would not have got so bad.

Although I am now feeling better than I have in a long time, it will be a while before I am 'back up to speed'.

Sorry this is so long but I wanted to get across to people how important it is to make yourself heard. You know your body better than anyone - make sure they know that!

Ern007 profile image
Ern007

Hi. I have AF and at times VF for which I take "Amiodarone" which has destroyed my Thyroid. I have moderate COPD and the moment, Angina caused by IHD and Aotic Regurgitation, I mention this because with multi conditions, it can be confusing what causes breathing problems and any one time. AF for example is a culprit and with COPD it's a double whammy.

My Oxygen Levels are 94/95 lower in sleep or sometimes when walking.

So I am in roughly the same boat but not yer HF, but I wonder some times. Both COPD and AF can cause breathlessness - I never know which is causing mine, Which multi conditions so hard to know which conditions is doing what,, If you are breathless and your AF is quiet, then you know it's not that at the time... You can buy BP meters from amazon which will not just tell you your BP, but will read in irregular heartbeat also.. Handy,

Sorry can't be more help but I also would love to know the answer to some of your problems. Why are you taking Digoxin if you don't mind me asking?? Good luck.

Festie profile image
Festie in reply to Ern007

Hi Ern007 I take Digoxin as a supplement to the bisoprolol for AF. Was diagnosed about 7 years ago and has time has gone on I have built up as it seems to be getting more frequent. I had one cardioversion, 2 years ago, which worked for about 6 week and it came back. I do take 2 different dueretics to stop fluid building up in my lungs, also a blood thinner. Fed up of all the fiddling with doses, seems to take forever. Thanks for reply. Take care and stay safe

hallentine47 profile image
hallentine47

Being in a similar position as you I suggest you get co-ordination between the different authorities treating you.

Kristicats profile image
Kristicats

Just a thought but if you know both consultants names you could contact their secretaries and pass on a message that you would appreciate both consultants liaising with each other re your treatment and put across your concerns. May be quicker and less hassle than relying on another third party ( your GP) to ‘eventually liaise with both?

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