Congestive heart failure: After my recent sojourn to... - NRAS

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Congestive heart failure

Someonesmother profile image
13 Replies

After my recent sojourn to hospital with abdominal and leg/feet swelling and pericarditis I have been back to GP, who says I now have congestive heart failure and I am booked in to see a cardiologist. Can't get in for another 4 months. What????? How did this happen, why did this happen? unfortunately no answers.

I went home thinking what can happen next to make life even more challenging. This is getting a little ridiculous really. I decided to read the Humira side effects and find it is a rare side effect of Humira. I have written to my Rheumy to ask if Humira is the cause as I never had this prior to going on Humira, which I have only had 4 injections so far, no inkling that I had any issue apart from afib, but I haven't had a reply yet.

I am at a loss to know what will happen next and trying to work being so swollen, short of breath and extremely fatigued is the pits.

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Someonesmother profile image
Someonesmother
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13 Replies
Caza profile image
Caza

Love the picture. I can't offer any information but just wanted to send gentle hugs your way x

Someonesmother profile image
Someonesmother in reply toCaza

Thanks Caza. I am a bit bewildered by it all.

Gigi71 profile image
Gigi71

So sorry to hear of your recent dx. I do hope your GP is giving you treatment for this. A family member has 80% heart failure, but was dx in hospital after being treated for pneumonia, which he didn't have. He has been put on meds and is doing well but not able to work, still under review. Wish you well.

Someonesmother profile image
Someonesmother in reply toGigi71

Thanks. That is my next fear, what if I can't continue to work. I am hiding my swelling under long skirts and long trousers but the breathlessness and confusion is becoming a bit obvious. hahaha I am on two different fluid tablets but they don't seem to be doing much yet.

Gigi71 profile image
Gigi71 in reply toSomeonesmother

I know it's costly for your treatment, but it really is important you get the proper medication and of course rest till it works. Easier said than done when you need to work. Sending you hugs. X

Someonesmother profile image
Someonesmother in reply toGigi71

I just hope the fluid tablets start to work soon so I can not look so conspicuous wearing long skirts all the time coming in to the warm weather!

Oh SM, you poor thing. Sending gentle hugs. I can't remember, are you in the UK? Not that you should have to wait that long, wherever you are in the world. Is it affordable to pay for a one-off consultation with a cardiologist? The British heart foundation has a good website for useful, practical and accurate information which may be helpful for you.

Take care and be kind to yourself.

Someonesmother profile image
Someonesmother in reply to

Thanks you for your advice. I am booked in to private cardiologist. I have another cardiologist elcectrophysiologist that I see who has worked on my heart for Wolffe Parkinson White Syndrome that I see on 16 Jan so I will word him up and see if he can do something sooner than March. I live in Oz and they have a heart foundation thing here.

rebbie1 profile image
rebbie1 in reply toSomeonesmother

I just wanted to tell you, that I also have pericarditis-and long term Rheumatoid Arthritis. A rather common thing that happens with pericarditis, is you get "constriction". It can either be from inflammation, where you get chest pain and lots of weird symptoms, or it can be if you had it for a long time, it can turn the heart sac hard or fibrous. It causes what looks exactly like heart failure. But a surgery where they strip off the pericardium cures it. You need some very specific tests to see if your membrane around the heart is thickened-an echocardiogram and a cardiac MRI are the main ones, along with blood work to gauge your inflammation levels. Hoping you get to the bottom of it all and do well.

Hi someonesmother,

the British Heart Foundation have a helpline but you can also email for information if you are not in the UK:

Heart Helpline: 0300 330 3311

bhf.org.uk/about-us/contact-us

As crashdoll says, they are very good. As someone with a family history of heart disease I can verify that as well.

Regards

Beverley (NRAS Helpline)

Someonesmother profile image
Someonesmother in reply to

Thanks Beverley. I think it is practical how to live and work each day with this information that I am seeking.

nomoreheels profile image
nomoreheels

What else can be thrown at you SOM? This is something else you'll deal with in time in your own inimitable way I'm sure, once the questions have been answered & you know the why's & wherefore's. My h was being treated for asthma (similar, breathlessness, fluid retention?) & when he didn't respond positively it was then he had first angiogram & the rest is history.

Your diuretics, what's been prescribed? I hope they act quickly so your breathing gets easier & you can get your legs out again, it'll be getting warm your way! 8-)

Someonesmother profile image
Someonesmother in reply tonomoreheels

I know it seems I just can't catch a break. hahaha He has me on lasix and aldactone but so far they aren't doing much. I just hope to also hear back from rheumy eventually to see if I keep taking Huimira or stop it if that has triggered this whole mess.

Yes it is finally starting to warm up here and wearing long skirts and tights gets a little warm when I leave the office and go enjoy the outside world

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