Heart failure

[sann]

Hello wonder if anyone can help me here, went to Drs. Last week with being very breathless, ( I have AF) he said he thought I had heart failure had blood test ok.booking me in for an echo on 6 th May, also hoping to see a new cardio at the hospital. Today I am very breathless again and feel sick, went to sleep and woke up suddenly feeling as though my heart had stopped, very frightened , don't know what I should do now. Can anybody suggest anything please  Sann

[Beancounter Volunteer]

Hi sann

Firstly I am not medically trained in any way, but let me see if I can pick my way throught what you have been told.

Firstly heart failure, is not quite what it sounds, it's not the heart stopping beating or failing completely it means your heart is not pumping enough blood, or that it's pumping but not at the right pressure. Breathlessness, tiredness and often ankle swellings are often symptoms of this.

No as to the sleep, this could be sleep apnea, waking up gasping for breath and AF and sleep apnea have a long history together apnea often seems to beget AF.

Echo great.. on the 6th great.. but sounds like you need to be in front of a specialist pronto as well, any chance you could get an appointment after your echo?

Be well

Ian

[sann in reply to Beancounter]

Hi there and thanks you for the reply, I feel a nuisance bother with posts but I feel so ver poorly, I went to my gp as previously had found out that my cardio had discharge me without telling me ( long story but it was about another problem from my Gynae . So when I went to see my go he suggest to go for a cardio nearer to where I live. To which he was writing to, so at the moment i haven't a cardio. So whether I go back to go after echo I don't know. Incidentally I am not going to a hospital for the echo it is at another surgery? I just feel totally messed about, as I have said before I think it's because I am 81 they don't want to be bothered. Sann 

[CDreamer in reply to sann]

San age should not be a problem regarding treatment.  My husband is 81 and received prompt and excellent treatment for prostrate cancer, sick sinus syndrone and AF.

If you want to be referred to a consultant Elecrrophysiologist you can choose who and where you want to go and as long as your GP agrees there is clinical need, there is no reason he cannot refer you, but sometimes you need to be proactive regarding your care so keep going back to your GP and ask for the referral.

And please do not feel a bother, either here nor at any surgery or hospital.

[sann]

Thank you happy jo, it is recalling freaking me out, I feel so poorly don't know what to do next.i don't know what blood test I had jo, I have probes with any antibiotic, they always make me feel worse but I know you should t stop taking them so I'm plodding on with them.only five more days to go.

[Buffafly]

Hi Sann, I have slight heart failure at the moment brought on by hurting my ribs in a fall, and also getting that sudden gasp for air even in the day sometimes. I have found I can't lie flat, it is much more comfortable to sleep slightly propped up even if you do snore! I had to laugh today reading about heart failure, advice was to sleep propped up to keep fluid out of lungs, then to raise foot of bed to prevent leg swelling. I think I need a hospital bed!

[Barb1 in reply to Buffafly]

I bought an electric bed for my arthritis. A side effect is that it is brilliant for my breathlessness and water retention. If you buy one for a medical reason the VAT comes off as well!

[purple in reply to Barb1]

Recommend that if you are considering an electric bed that you go into a shop to try it.  These firms that will come to your home do have a reputation for hard sell and are difficult to get rid of even if you just make a phone enquiry - I know from experience.

I got mine from a local shop, they were helpful, gave a discount when asked, VAT is deducted if you have a medical condition,  and are easy to contact if anything goes wrong. I have been very pleased with it for a variety of ailments.

[Barb1 in reply to purple]

Totally agree with that

[Buffafly in reply to Barb1]

Hi Barb, I have just ordered a wedge pillow as a temporary measure, then thought I would look at electric beds although I can't change our bed at the moment. I was amazed at the choice! I'm definitely going for one when we eventually move. I wished I could take my hospital bed home with me, it was one to prevent pressure sores and massaged you gently. Once I got used to the constant humming sound I loved it.

[cassie46]

Hi San

Have you got a lot of fluid building up, ankles, legs and abdomen.   I had this with HR jumping around 180/200 and very breathless.  I found I could not lay down to sleep, I just couldn't breathe, I had to be propped upright to get any sleep and almost frightened to fall asleep in case I stopped breathing.  It was as if had to manually take breaths to keep going.  I was admitted to hospital wth heart failure and after test told I had AF.   The fluid was quickly reduced with high dosages of Furoseimide via a drip and a catherter.   I felt so much better once the fluid started to go and I could breathe again. They kept me in for 12 days, lots of tests ect.   This was in 2014.

I am now very careful about any fluid retention, check my weight every three or four days and if I feel there is some fluid, or ankles a little I take a few doses of Furoseimide.

I also had another bout in May 2015, Suddenly stared having breathing problems and a cough.  I had not had a cold or infection jus suddenly started coughing and very breathless and chest sounded congested.   Doctor to me it was a chest infection and put on antibiotics (one mentioned above, that knocks you for six).   Anyway did not improve, went back to GP and he admitted me to  A &E.   

After tests it was confirmed I did not have a chest infection but fliud on the lungs due to heart not pumping properly and there was fluid on my ankles.     I overheard two of the doctors in A& e talking saying the due to my af and previous heart failure my GP should have sent me for an xray when I first saw him!

Hope you feel better soon.

Cassie

[skybluepink in reply to cassie46]

Check out pulmonary arterial hypertension which didn't know about till MI 11 years ago . As the serious problems don't show up on tests suspect microvascular but because of how NHS functions remits, contracts, policy [ testing] procedures cancelled out by directing to ignore classic heart failure symptoms.

if you have multi chronic conditions made worse by antibiotic policy the NHS Constitution doesn't make sense re URGENCY & assistance at emergency level .Statistics show too many are not catching it early enough what do they do establish policies & procedures to block as NHS is responsible for making its own problems using the unqualified to administer & maladministrate so only look after their own interest .

When last in hospital cancer scare had to follow up for over year at least 6- 7 people came up to me with forms .When a move the NHS does not continue monitoring appts it refuses to transfer.As for sustenance??!!

I am still waiting for Investigation of lymph lumps which come up & down if antibiotics withheld .Already have the cysts ignored when disability re neurogenic bladder one ureter too many [ spoon bifida ignored in online record & incorrectly recorded ] causing reflux & the CFS /fibro lipo lymphoedema means sepsis rears it head.via spasms in trigger point areas I already have the graph from urodynamics Prof ??! Yet the remit means trigger point & weak heart pumping cause spasms which will probably lead to multi infant dementia like Late Mother.

[Mazza23]

If you are having trouble breathing you could have fluid on your lungs this happens to me go to emergency you will get treated quicker

[Tatters]

As Beancounter says, heart failure is not what it seems, it means that it is failing to do when it should do. I have similar problems and I see the Heart Failure Nurse around every four weeks. She is wonderful, pleasant and knows her stuff. She can change my prescription, sadly some have been increased when I wish they were going the other way. All the very best Sann, try not to worry.

[sann in reply to Tatters]

Where I live we don't have a heart failure nurse or at least I don't know of one, are they based at the hospitals then? Sann

[Tatters in reply to sann]

Have a word with your medical practice, sure they can help. Mine is based in a hospital but that shouldn't stop you seeing you. best  wishes.

[hydrangea]

Hi

Sorry to hear you are suffering there.  I had heart failure last year.  It got that I was so breathless that |I couldn't walk up the stairs without stopping three times.  I couldn't get round the supermarket without feeling sick and having to sit down - anywhere i could.  One Saturday night I felt so sick I went to the bathroom (downstairs) and sat on the floor.  I couldn't get back up again, I had to crawl to the living room.  Still I didn't go to A&E, it just never occurred to me, but Monday morning I was at the GP's and was sent straight to hospital.  I had a cardioversion.  There was talk of draining the fluid from my lungs, but luckily the meds cleared it.  This January I had an ablation and feel great.

I just told you all that so you know it won't go on forever.  But don't be silly like me - get to see an EP as soon as possible.

Best wishes

Sue

[sann in reply to hydrangea]

I am going to try and get in at the Drs tomorrow and see what he says thanks for replying to my post Sann. take care

[hydrangea in reply to sann]

Good luck.

[sann]

Thanks jo for your thoughts of me , today I  woke up feeling very sick,  but managed to eat some toast, it sorted it out but it's come back again. Did I mention to you that since the dr said I have heart failure I have developed a cough don't know whether that goes with the complaint, going to try and get an appointment with the dr tomorrow see what he say, thanks for posting back take care Sann x

[cassie46]

Hi Sann

Hope your are feeling a little better.   Tatters mentioned a Hear Failure Nurse, I have one too but she is a community Heart Failure nurse.   When I first cames out of hospital in jan 2014 I was put on her list.  She actually comes out to see you at home for he first few visits (and carries on with this if the patient has problems getting to her Health centre.   I still see her regularly but at the health centre.   You could enquire if you health area has one (I think they have about 4 of them here to cover different areas).  I also have the AF nurse at the hospital but my Heart Failure Nurse is easier to contact and takes time to talk to you.    If your breathing is really bad i.e can only take a few steps without stopping to get you breath trouble getting up the stairs you realy should go to hospital.

Cassie

[sann in reply to cassie46]

Thanks for your post, I have had to get up early this morning as I felt I couldn't breathe and also felt sick, it is 5.15 am, I am going to ring the Drs at 8 to see if I can get an appointment, as I feel very scared at the moment .As a child in the 30s I had what they called nervous debility, was frightened about e erything, later on I got over it but I think it has come back to haunt me now as I am the same. Thanks once agin, take care  Sann x

[Hidden]

My GP diagnosed me with Heart Failure 3 weeks ago. I panicked and got hold of my EP at the hospital.

He's absolutely brilliant. got me in for an echo last Monday and consultation with him last Friday.

My heart is fine, other than a bit of thickening due to uncontrolled high blood pressure (my fault that one)

Turns out my GP is an idiot.

Hope you have a similar experience. Try not to worry too much (I know how hard this is!!!)

[sann in reply to Hidden]

Thanks mikee69 I'm so worried about this, the only EP I had was when I had my pacemaker in at Glenfields could I get back to him I wonder ?  Sann

[cassie46 in reply to sann]

Hi Sann

You could try contacting the EP's secretary and see if he will give you an appointment.  But at the moment you must get your breathing sorted out, it is a very frightening experience when you have to struggle to breathe.     Have you got an appointment with the GP yet.

Cassie

[sann in reply to cassie46]

Hi cassie, yes I got an appointment today at 10.50, didn't see the dr I usual see, but he listened to my heart took blood pressure and that thing they put on your finger , he said he thought my lungs ok, but gave me some tabs called candles argon cilexetil 2mg take one a day, and in two weeks time have to have a blood test.!  I was fully convinced that he would send me to a new e , even packed a bag. He said if I had a thing different happen to go back to him. Sann X 

[sann in reply to sann]

Tabs should read candesartan cilexetil  sorry about that wrong finger wrong word x

[cassie46 in reply to sann]

Hi San

How are you today..The medication your GP has prescribed is a statin for high blood pressure, hypertension - seems odd but of course I have no medical knowledge.  What meds are you taking for your AF.   Was your blood pressure okay when you saw GP.   At least you are having a echo on Friday which will tell what may or may not be going.

Cassie

[sann in reply to cassie46]

Hi cassie I take Sotolol 120 mg twice a day and Dabagatrin 1 twice a day. He never told me bout my blood pressure, in fact I thought he looked a bit fed up and didn't want to be there, perhaps he had too much vino at bank holiday. I asked him about an EP and he just didn't  answer. I suppose I will have to wait until they get a cardio bloke sorted out for me. I don't feel too bad today, the frusemide I took yesterday seemed to be working overtime, but today isn't the same. Thank you for asking abou me, re you feeling ok Sann x

[cassie46 in reply to sann]

Hi San

How are you today.  Hope all goes well tomorrow with your echo.   How long have you been on Sotolol and how long since you have seen a cardio.   Just that as you may have read on here that Sotolol is not normally prescribed for AF now unless there are other heart conditions as well.   If you do a search on here for sotolol you will find some of the posts.

Best of luck for tomorrow again.

Cassie

[cassie46 in reply to cassie46]

Hi Sann

How did i get yesterday, have not heard from you, are you okay.

Cassie

[sann in reply to sann]

Hi mikee saw the dr took blood pressure listened to my heart and decided to give me some tabs called candesartan cilexetil  2 mg and in two weeks time have a blood test, if I get worse to go back. Never heard of these tabs. Thanks for being there Sann

[Vony]

As always Jo, a lovely and thoughtful response xx