Wee update from mickmoo: I posted on... - British Heart Fou...

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Wee update from mickmoo

Mickymoo
Mickymoo

I posted on Saturday as I have suspected heart failure and had an echocardiogram on Monday past. My appointment with cardiologist was supposed to be this Friday for my results. I received a letter on Saturday changing my appointment with cardiologist until end of November. Stressed all weekend and then convinced myself if it had shown anything urgent then my appointment wouldn't have been postponed. Through curiosity I rang the cardiologists receptionist and she told me the cardiologist I am seeing has had to take leave as his father passed away. I understand he has to take time of naturally but it means no one has looked at my results. So I have no choice but to wait until end of November. My anxiety is sky high since Saturday . Don't know if I can cope mentally until then. I can't stop crying, can't eat or sleep xx

63 Replies
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So sorry to hear this and it's understandable that you are feeling anxious but it doesn't mean it's bad news so try to keep positive maybe go see your GP fir some help perhaps another doctor can look at the results. In the mean time there's nothing else you can do so try to stay calm when I'm feeling anxious I meditate and try to practice mindfulness it's not easy though but I find it helps sometimes

Take care

It doesn't necessarily mean the results have not been looked at. He could have looked at them before he went on leave but even if he hadn't another Dr would no doubt have looked at the results to determine they were urgent or not. There is always a team of Dr's that work with your cardiologist.

Just to add to the comments already made and I agree no news doesn't mean bad news and even if it is heart failure it is not 'the end'. I was diagnosed with heart failure a year ago. The extent was boarding on severe. It was shocking and has caused me much anxiety and I've probably become a bit depressed as a result. However, and I try to focus on this, physically little has changed, if anything I'm physically better as a result of the medication. What has given me hope are people on this forum who are living well with heart failure and have been for many years. I take my hope and inspiration from them. Best wishes .

Milkfairy
MilkfairyHeart Star

Hi Mickymoo

You have had some fantastic advice from

GracieOS, Lezzers and Sunshinebrew.

Someone will have looked at your report the technician that performed your echocardiogram.

They will have written a report and if they found anything really seriously wrong they would have informed one of the doctors.

My initial contribution: 'All of the above' - you've got great advice here from the others. I especially like Milkfairy's about someone will have looked at the report from the tech.

For me, the best part of the echo was when the tech said 'Ok, I'm not seeing anything imminent so you can go' - what a relief that was as I knew going in if she'd seen anything she would have plunked me straight into hospital or at least called in the duty cardiologist.

Take a small deep breath, square your shoulders back and every time you feel the worry starting up, remind yourself if the tech had seen anything 'imminent', you wouldn't have gone home that day, you would have gone into hospital.

And keep posting and reading here, it will help ease a fair bit of the anxiety.

Hi Mickymoo

I too had a echocardiogram back in March this year with suspect heart failure never heard anything back so thought everything ok until going to cardiologist in August to be told I’ve got heart failure and need ICD fitting, so now waiting to see different cardiologist in December to see when they can fit one. So if it goes ahead it will probably be 10 to 12 months from having echocardiogram to having ICD fitted. My diagnosis from echocardiogram to having ICD certainly isn’t a quick process. In the meantime I’ve been told not to excert myself too much

The thing is don’t worry too much I know you want answers sooner than later but the end of November isn’t too long to wait

Omg daveofpensby. 5 months for echo results which proved you had heart failure. That is awful. And now you have to wait for treatment. It's terrible really isn't it! You must be feeling so in limbo all that time. You would assume hearing nothing for 5 months was a good sign too. What symptoms did you have? I don't know anything about heart failure apart what I read on here, what is an icd? X

At present don’t have any symptoms I walk the dog 3 to 4 mile everyday go the gym 2 to 3 times a week so yes it was a shock when diagnosed My own Doctor said to me the other day that I’m doing remarkable well considering my EF was 34% which puts me in the group requiring ICD (internal Cardio Defibrillator) as my heart could go into spasms trying to pump enough blood around my body and the heart could stop. And yes it is a long time to wait

Well daveofpensby I wish u all the luck in the world with your upcoming treatment. Will keep an eye on here to see how you get on xx

Thanks Mickymoo

Thanks all very your very good advice. As you all say someone is bound to have looked at the results. While getting the echocardiogram done I asked the technician what my ejection fraction was (something I've learned from this site) and she said she wasn't allowed to tell me. I asked if anything looked concerning and she said again, she wasn't allowed to tell me. I think the reason why I'm getting so frustrated is because the last 4 years I have had severe joint pain along with psoriasis (I've had years) and was only diagnosed 6 months ago with psoriatic arthritis. With the lengthy waiting times for rheumatologist (18 months for urgent referal) along with 3 months waiting for the treatment i am know on (humira injections) to get funding approved for, I've had enough of waiting for answers already. I also have an overactive bladder. Was on 3 different types of medication for this which didn't work and also was 1 years waiting list to see urology. I recently had botox injected into my bladder wall ( with nhs) to stop my bladder contracting so much but unfortunately the procedure didn't work. Now out of the blue I have been told I probably have heart failure. Because I've waited so long the past 4 years on diagnosis and treatments for these other issues I can't bear the thought of waiting again . I asked my cardiologist at my initial appointment a few weeks ago if the echocardiogram didn't show anything , then what? He said 'well we have a lot more testing to do'. If I knew what was wrong then I would buck up and get on with whatever I'm told to do. It's just this 'in limbo ' feeling all over again. I am currently on furusomide, up to 40mg twice a day and although I'm going to the toilet alot lol, I am still gaining 4 to 5lbs everyday which by the morning has gone again. I have to wear nappy things to bed which at aged 42 isn't attractive lol. My chest feels like someone is sitting on it and I wheeze terribly when I lie down. I get out of breath in the shower even. Sorry for the extremely lengthy moan but it's great to get it off my chest to people who understand how each other are feeling. Many thanks folks xxx

Sunnie2day
Sunnie2day in reply to Mickymoo

Blimey, you HAVE been through the wars - if anyone deserves a good moan it's you!

Lezzers
Lezzers in reply to Mickymoo

Oh Mickymoo, I wish there was a way of hurrying this up for you. I really do understand how you're feeling, it's the not knowing that's the worse, I can deal with things better if I know what I'm dealing with.

Is your GP aware of just how anxious you are, the amount of fluid you're retaining and your wheezing? Can he/she contact the hospital for you?

Mickymoo
Mickymoo in reply to Lezzers

Yes lezzers, as you say it's the not knowing. Things are alot easier to digest and be proactive about when you know what your dealing with. I was with my gp last week , and it was he that upped my furosomide. He knows I am breathless but to be honest, the breathlessness seems to be getting worse by the day. I am on my 2nd week off work (as advised by the gp) and the swelling is alot less in my feet now but alot more in my stomach, as I look quite pregnant. The furosomide helps but seems to wear off within about 4 hours and I swell up again. My very eyelids were swelling the other day. I notice it more because I am quite thin build. I might go see the gp again or do you think I should go to a and e. I don't want to waste their time but I don't feel great. Maybe not bad enough for a and e though. Im driving myself mad to ge honest and feel like just giving in and lying under the covers in bed all day, but I can't as I have a gorgeous 7 year old son who depends on me. Sorry to sound morbid but I've had enough worrying to last a lifetime. I'm very grateful to have found this site xx

Lezzers
Lezzers in reply to Mickymoo

Mickymoo, . If you're feeling poorly and wondering if you should go to A&E, then you probably should go so they can at least get your breathing sorted out. At the very least you could ring the NHS helpline number & they will get a Dr to call you back. Then you can tell him/her what you've told us about how you're feeling, how much fluid you're retaining & your breathing etc.

Let us know how you get on when you're able to

Lesley x

Mickymoo
Mickymoo in reply to Lezzers

Thanks Lesley I will do. I'm going to get an emergency appointment tomorrow with my gp and see what he says. Thanks for listening and replying. Appreciate it. My name's lyndsey by the way. My name on here is after my dog, mickey xx

Milkfairy
MilkfairyHeart Star in reply to Mickymoo

Lesley is spot on with her advice .

I am so glad that you are going to try and get an emergency appointment with your GP tomorrow.

Please do tell us all how you get on.

Lezzers
Lezzers in reply to Mickymoo

Hi Lyndsey. Definately get an appt got tomorrow and make your GP listen to you. But if you still feeling poorly tonight, especially if your breathing doesn't improve. then definitely ring the helpline number tonight, they can help make you more comfortable.

I have a soft spot for dogs, I have 2 for my sins!

I would go to A and E my friend a doctor told me the more fuss you make the more likely you are to be seen. I had the same when I needed stents I just couldnt get a doctor to take note and so I went to A and E and also called an ambulance I did manage to see a cardiologist who obviously thought my case was not urgent so the long wait continued and I did exactly the same until I got my angiocram and it showed that I had 70% blockage and so I had stents put in but it was a long long road and the anxiety was terrible. Best of luck

So sorry to hear about all your medical problems. I do agree being in Limbo is horrible as you do not know one way or the other what is happening and axiety and fear step in which makes it worse. Someone has already suggested to you to try meditation and do not over tax yourself too much. I do not think heart failure is as dire as it sounds I think it is that the heart finds it difficult to bumb blood around and so you need to take it easy so as not to make the heart work too much.

Poor you, you have had a lot to deal with but you have dealt with it and got on with your life as much as you can. The end of November is not too long but I do understand that you would rather know what the hell is happening and it will seem like a life time so meanwhile, if you can, put it to one side, you have had it for some time, but just take it easy. Time will soon pass and let us know how you get on.

Thanks surreychica_1, it's hard to know now whether my anxiety is making things worse or possible heart problems! I was to get my results tomorrow and go back to work on Monday. I can't really afford to take time off work sick , as I already have a warning when I was off with arthritic problems. I love my job but it is very stressful and busy all day. That's why the doctor suggested a couple of weeks off, to try relax a bit until I got my results. I think sitting at home has done me no favours though. Too much time to think. I will probably go back to work after next week as I don't see being diagnosed as quick as I thought it was going to be lol. X

Good idea I think to go back to work. Not much good sitting at home with it all spinning around your head. Imagination is terrible as it all gets out of proportion. Work will take your mind off of it. Anxiety is a terrible thing. I am going though the same as having had sents put in nearly four months ago, not one follow up and I keep thinking also that perhaps I have heart failure. Cannot get a thing out of my doctor and my appt. with the cardiologist is "pending" whatever that means. Yes go back to work and worry less. The time will pass in no time at all.

To me pending sounds like an appointment date hasn't been set yet. Although I could be wrong. I know what you mean about getting nothing from the doctors. I rang the cardiologists secretary on Monday to ask why my appointment has been postponed and she was really sharp and unhelpful. She said the cardiologists father had passed away and he was off for a while, but would not tell me if anyone else was looking at my results. The whole process for everyone is so frustrating x

Mickymoo
Mickymoo in reply to Mickymoo

Hi surreychica1,

I was reading your profile page and see you had an awful long time waiting on appointments and tests. The waiting is truly awful isn't it! I feel slightly better today but as you know havnt been feeling great last few days before. I don't want to go to a& e because my blood pressure although marginally up at 140 over 87 and my last ecg only showing a slight fast heart rate, I'm sure they will look at that just and send me home. Think its gunna be a look process, as u had, to get to the bottom of my swelling etc. Just wish the cardiologist had of not mentioned 'heartfailure' to me b4 anymore tests then I'd be blissfully unaware lol x

Petmad5
Petmad5 in reply to Mickymoo

Oh hun. You have so much going on , never apologise for whinging here. We are all here for each other.

I Too have that scary ‘person’ sitting on my chest, the wheeze , the effort to go for a wee etc and, have days where I can’t muster the energy to get out of bed but focus internally on the next day being better .

I get very depressed and try also ‘go’ to my ‘happy place’ - coping strategies I’ve used and visualise to calm me.

Make an appointment to see your GP. Have a chat and get some more reassurance

🙏🏻

Mickymoo
Mickymoo in reply to Petmad5

Hi petmad5,

My gp made a referal for me 6 months ago to the mental health team to speak to someone as I had become very withdrawn from my friends and family and he believed a was a bit depressed. That was just with the arthritis and bladder problems. My son , who's 7 has adhd , and although he is not bad he he extremely hyperactive. I was struggling with all this as well as working fulltime. Now this 'heart ' problem has been thrown into the mix (totally out of the blue). Our waiting times in Ireland are over 1 year for a mental health team appointment. I have spent the last week feeling really sorry for myself and my mind has been literally spinning with different sanario's, having nightmares every night and wanting to bury my head in bed. I woke up today though and thought 'right girl! Now it's time to pull yourself together and get on with things the best I can'. I'm done feeling sorry for myself (hopefully this attitude will last lol) . I fear I will loose my job this time as I was off sick last December and January due to severe arthritic pain in my shoulder. It took 7 weeks to get a steroid injection for my shoulder. Waiting times are awful. But I have come to terms with 'whatever will be will be.' I would be gutted to loose my job as I have worked for them for 18 years and recently got a good promotion. But hey, it's not the end of the world. Thanks for your support xx

Petmad5
Petmad5 in reply to Mickymoo

Sweetheart, there may be a charity, institute or similar that offers counselling for mental health issues. Look online and on Mind website. That’s where I got help coz Cldnt wait for nhs help.

Your positivity is good but counselling will help you get thru those gloopy days. Maybe CBT also.

My son is on the autistic spectrum and exhaustingly challenging.

Us girls need all the help we can get but unfortunately usually have to find it ourselves.

Xoxoxo

Mickymoo
Mickymoo in reply to Petmad5

Thanks petmad5,

I'm sorry to hear about your son also. I think because of their needs it's a fulltime job on its own, never mind juggling work, housework and health issues on top of it all. Somethings gotta give eventually. I have always been so strong with everything but this last while I feel I'm running out of fuel. My priority at the moment is my son as I want the best for him but I feel I'm not coping anymore. That's why my gp advised me to take time off work. I think he saw me unravelling as I spoke to him at my appointment. I will speak again with him to see if I can have my mental health appointment speeded up any. In the meantime I'm so afraid I'm going to loose my job. I want to go back on Monday but I know I'm not mentally fit. The last few weeks I was at work I kept crying at the slightest comment made by my colleagues. Just not like me at all. Can I ask how you cope with everything? Do you work also? I'm going to see if I can reduce my hours but have already been told this is not an option. I might make myself an ohs referal and maybe get them behind me for reduced hours xx

Petmad5
Petmad5 in reply to Mickymoo

If you are a carer for your son wi special needs, I believe employers are now bound by law ( at last) to be flexible with you. Does he get DLA or PIP? If so, even stronger case for employer to be understanding and adjust.

Even tho u need time away from work for everything you are going through, if you can get what you need from work using your “carer’s hat” so be it. Same result.

The carers website signposts to helpline. Ring it, they are ace at advice, Working carers’ rights , kind ear etc. It’s a free fone and open mon to fri daytime.

I’m falling apart. I don’t work now. I volunteer locally when I’m up to it. I Held a very responsible job that I loved ( used my brain!!) and miss it so much. I Am also now a cancer patient.

I’m soooooo tired.

I was strong for so long for everybody else but now I need to be strong for me, I’m running on empty.

The CBT skills leant from my counselling does help me but not as much as I had hoped.

My rescue dogs lift my spirits. They So know when I cry , that to come by my side Really helps me. Bless them.

Xoxoxo

Mickymoo
Mickymoo in reply to Petmad5

Ah petmad5 you have certainly been through the mill. Trouble with your heart and cancer too. I can't imagine how your dealing with all that. When I hear stories like yours it makes me feel that I am needlessly worrying about myself when their are people worse off. I have just begun my journey into finding out what's wrong with me heart, if anything. I keep telling myself that I couldn't have heart failure. This persistent swelling and breathlessness has to come from somewhere but I'm not convinced it's my heart. Maybe I'm going into denial a little! I love dogs too. I have a Springer spaniel. Don't know who's more hyper, him or my son lol. I don't get dla for my son , have never applied, although he also has bad eczema and asthma. Maybe something I could look into. I'm going to take on board what you said about my work also and try and get my hours reduced, even to a 7 hour day. They know my son has adhd and that I suffer from psoriatic arthritis and now this heart issue. In the past all they have said is, 'we would like you to work a 9 hour day in busy times'. They also said that i shouldnt have taken a fulltime post when i got my promotion if i couldn't cope. I think personally this is pretty heartless. I did work a 6 hour day and coped fine with this. At the time I took the promotion I had no heart issues, I feel the stress from the new job has brought them to light. I work for the civil service the last 18 years and I think I'm going to take your advice and speak to them about having to care for my son (with his needs) and also my own health issues. There are plenty of part time posts in civil service. I've been do down I was ready to pack it all in. Think its about time I stood up for myself. Thanks petmad5, for the advice. I'm sorry to hear of your troubles also. How are you feeling today? Xx

Milkfairy
MilkfairyHeart Star

Mickymoo my goodness we all wish we could help to speed this process up for you.

You have been through so much all ready It is understandable why you may not be able to trust in the system that is supposed to care for you.

As Lezzers has said go and see your GP tell them about your breathing problems especially when you are lying down.

Mickymoo
Mickymoo in reply to Milkfairy

Thanks milkfairy. I am going to have to see someone. I sound like a 90 year old trainsmoker when I am lying down. When I wake in the mornings it takes awhile to breath properly and my heart races especially when waking up. My ecg apparently showed a nice steady heartbeat though. I don't think it would show that when I'm moving around xx

Maybe there's a problem with my lungs as my father died at aged 50 with lung disease. That wouldn't explain the swelling or high bnp though I presume. X

Hi I was diagnosed in June only just had my MRI scan got to wait 3 weeks not even seen a cardiologist yet .

Mickymoo
Mickymoo in reply to Modeller3

That's awful modeller3. I would be crawling up the walls waiting that long. I have never had any patience though lol. It's just a constant worry having to wait isn't it. You try put things to the back of your mind but it creeps back in. I hope everything works out for you xx

I know the feeling! Poor you. It is all such a worry.

My severe HF was found when at hospital early in January 2018 and after all the tests only confirmed to me on 30th April by a Cardiologist but on reviewing my test results I was sent via my GP drugs to start right away. Someone will have looked and although you don't know will have taken action.

I know how scary it all seems but stay strong, you will get there eventually.

Someone here linked me to an article about the words "heart failure" and how some medics want even the name changed as failure sometimes gives completely the wrong impression.

I know I thought I was at deaths door... and I am not, I am still here running 5Ks and exercising.

My mental health suffered for a long time but now I am tackling each day head on to prove my diagnosis was only the beginning...

Take care and good luck today.

That's great your doing well after your diagnosis. I don't think I could run up the stairs at the minute without my heart feeling like it's gunna jump outa my chest lol. I too feel the mental health side of things does not help. I need to pull myself together and get on with things I think x

My eventual diagnosis was LVD / Takotsubo Cardiomyopathy or broken heart syndrome... ie STRESS broke my heart!

I am normally unmedicated as they don't agree with me but still got it down to mild from severe, still take attacks (in one now) where BP goes mental and they medicate till I can't tolerate the drug. 6th attempt and more unwell from tablets than HF again... go figure!

My main suggestion is relax... it helps because some of your issue will be worry and stress making it worse.

It sounds like you have alot going on. I wish u a speedy recovery with your blood pressure. I think relaxation is definitely the key to keep ourselves sane! Xx

I agree. Heart failure sounds awful when it isnt heart failure at all The heart just needs a bit more help to pump blood around and they have medication for that. They are frightening words especially when it doesnt mean that at all. Good point.

Milkfairy
MilkfairyHeart Star in reply to Surreychica_1

In other languages it is called insufficiency it is only in english that the name heart failure is used.

There is a move to find a different term.

My Cardiologist is The Heart Function Improvement Clinical Lead.

Mickymoo
Mickymoo in reply to Milkfairy

Sounds like you have a great cardiologist milkfairy. The term heart failure is so final sounding. They definitely should rename it! If people were kept more in the loop with what was going on, I think people would be alot more confident in dealing with things . You can't deal with something you havnt been diagnosed with. It's a vicious circle xx

Hey.

As others have said previously of course you are anxious but being anxious will make you more anxious!!

The consultant has locums working with them a whole team so I would say that the news is positive or you would still have been seen.

I'm still waiting for the complete result of my cardiac resonance scan I had in September, my appointment isn't until December! Although I have a letter that my stress test during exercise showed no changes so I can move out of my chair 😉.

It seems everyone has a long wait for results. I only had my echocardiogram done last Monday so I'm maybe being far too impatient then. Was just disappointed that the appointment was changed until the end of the month. Sounds like this is just the start of a very long journey!! Xx

Trying to ease your worries...

I had no idea I had a problem but had an echiocardiogram and the radiologist told me there and then I had a very serious heart condition-which turned out to be dilated cardiomyopathy. She told me she that she would book me in for the day after for an urgent appointment.

I know we complain about the NHS but generally if there is an urgent problem which needs urgent intervention they will deal with it.

I completely appreciate your anxiety but hope that this might ease your worries slightly.

Thanks mariancolyer, I'm sure as u say if there was anything wrong I'd of heard by now. I asked questions at my echocardiogram and she said she was not allowed to tell me anything until the cardiologist saw it. Don't know if that's good or bad! I was supposed to get my results on Friday but my cardiologist has had to take time off because of a bereavement. I can't really complain as from going to the doctor with swelling and high bnp levels , it only took a couple of weeks to see the cardiologist and another week to have an echocardiogram done. I'm not sure what your condition is as I know nothing apart from what I read on here but it certainly sounds serious. How are you coping/feeling now? X

Hi, I don't know if this is any comfort to you or not. But I was blue lighted twice on the verge of a cardiac arrest back in May this year, upper back pain. I went through the motions and was told I may have a hole in my heart.So i was asked back for a CT scan. Meanwhile put on the standard package of Tablets. This appt.came in June. I kept on at them for the results right through Summer and eventually at the end of August I got them- to be told. I have no coronary artery disease, Mild Left ventricle systolic dysfunction to come off statins/aspirin. I have weaned myself of the rest. It has been nearly 6 months and on Monday i will finally speak to a cardiologist as none of it makes sense. My anxiety has gone through the roof over the summer i thought I was on my way out on the slightest twinge. But I have now come to realise I am alive breathing 6 months later on No medication, confused still granted and I am hoping for some answers on Monday. The hardest thing out of it all has to be the anxiety of not knowing but the longer I am here the more it is easing. It is your mindset, take each day slowly and remember to breathe. You will get your results eventually keep pushing for them and ask your GP to push as well. The standard is 6 weeks at least...

Mickymoo
Mickymoo in reply to Brandibell

Sounds like you've been on an emotional rollercoaster not knowing what's going on. Don't know how you've coped!! It really is the not knowing that's the worse. When we know what we're dealing with we can buckle up and get on with sorting ourselves out. Anxiety is a terrible thing. Mines has been under control for years until now. I wish u well on your journey and hope you get all the answers you need at your appointment. Xx

Brandibell
Brandibell in reply to Mickymoo

Thank you very much and the same to you. X

I’m sorry to hear you are so stressed and can completely relate. Speak to your cardiac/heart failure nurse who will be able to access your results.

Hope this helps - wishing you all the best.

I don't have a heart failure nurse or anyone to speak to really. This is all new to me as I only went to the doctors a few weeks ago with persistent swelling and breathlessness. He made me an emergency appointment with the cardiologist, who I saw and had an echocardiogram on Monday past. I'm on furusomide as prescribed by cardiologist but unfortunately I was to see him this Friday and he's off on bereavement. His secretary was not helpful in any way xx

Hi Lyndsey. I hope the comments from friends on this site have helped. I can only reassure you that your cardiologist would not have filed all his patients results away until he returned. There will have been other competent cardiologists taking on this workload in his absence.

I just remember all the delays my husband went through and the stress we all suffered during these delays. Holidays were cancelled, stress related illnesses followed and his grumpiness increased!

The mind does play tricks. I think the old adage "no news is good news" applies but it's of little comfort I know.

I hope things improve and you finally get answers. We can all manage better knowing what we're up against!!

All the very best to you and yours xxx

I am definitely glad to have found this site and everyone on it has been really assuring and helpful. Don't know how id be coping if I couldn't share my thoughts on here. So thanks everyone xx

When I was exaimed by the cardiologist he said a few things of interest if anyone has any thoughts. He listened to my chest with a stethoscope and said he didn't think I had cardiomyopathy (not sure what this is) as he would have heard a certain sound in my chest. He also said that stethoscope only picks up so much so he couldn't be certain. I told him that I eat alot of chocolate and buns and have an awful diet really, (think I can eat what I want as I'm so slim) , and he said he didn't think my diet had anything to do with it either. So I'm puzzled. He said he still thinks I have heart failure (going by bnp levels and swelling). Anyone else in the same boat as me. It is interesting that 15 years ago I had an echocardiogram that showed a heart murmur and that I had a 'floppy valve.' I was told at the time it wouldn't cause me any problems and was left at that. I do not have a heart murmur now. I'm just so confused. Xx

Hi Lyndsey - hope you’ve managed to get to A&E by now as your breathing problems sound v similar to mine. Luckily I was packed off by my surgery straight away to A&E and spent about 5 nights in hospital. They got over a stone in fluid off me and my breathing went back to normal as I had been making the same sounds as you. Plus I was put on 6 tablets a day, 2 of which were fluid tabs although now down to only one.

Keep us posted how you are. Fiona

Hi Mickymoo,

I was diagnosed with heart failure, caused by dilated cardiomyopathy, twelve years ago. My symptoms were swelling and severe breathlessness, especially at night. It took several months before I saw a Cardiologist, who also said I had an arterial blockage, and needed a stent. I had many tests, but usually had to wait four to six months to see the cardiologist for the results.

I was put on a selection of medication, which was changed from time to time, until the most efficient selection was found.

I now still have borderline severe heart failure, but I’m coping quite well. It seems that it is normal to wait ages for cardiology appointments, sometimes up to a year, but there is no cure for this illness, so once you are on the correct medication for you, there is not much they can do. The meds are very good nowadays, and really help keep symptoms at bay.

By the way, while waiting for my initial appointment, I found that the best thing for the severe nighttime breathlessness was adding one or two more pillows under my head so that I was propped up. It did help quite a bit.

Don’t panic, your tests and appointments have been quite quick really, but if you feel really bad, go and see the doctor, who should be able to try some medication to help you.

I have been going to my gp for over a year with swelling in my feet, legs and stomach. She told me it was nothing to worry about and there was no connection between stomach swelling and feet swelling. I decided to change gps recently and the new gp actually looked at the swelling, which was pitted in my legs and sent me for bnp tests an ecg and booked an echocardiogram along with urgent cardiologist appointment. I can't help but feel let down by my previous gp. I should've been seen by someone a year ago and maybe things would be sorted out now. Suppose no point in dwelling on that now though. Your advice about extra pillows is good as I have found sleeping with 3 pillows helps the breathing. Things are rolling on now I suppose. At least I'm not waiting months to see a cardiologist. Shouldn't really complain as I only have til end of November to wait now. Thanks for replying xx

Hi Fiona,

I havnt been to a & e yet as I have my little boy off on halloween holidays with me. I don't want to feel I am wasting their time either. During the day I feel like someone is tightning a belt around my chest but it's when I lie down the strange wheezing noises start. I too am full of fluid. I am usually under 10 stone but was up to 11 stone a few weeks ago. The cardiologist told my gp to start me on furusomide, which I've had upped last week. It does relieve the fluid but as it wears off the fluid returns. I wonder is the fluid causing my breathing to be off, especially when lying down. I could sleep the clock round (if I got the chance lol) . Even with the furosomide I am retaining about 5lbs of fluid every day. Can I ask what your other symptoms were apart from fluid and breathing? Xx

I was exhausted and had trouble breathing. Was barely able to put one foot in front of the other. My EF was 17% instead of 65%. It’s now up to 43% and my HF consultant regards me as well enough that she needs to see me annually, as does my HF nurse. I am seen by Harefield more regularly and had a 24 ECG last wk.

I would strongly advise you to see an out of hours GP over the weekend or if not please ring 111. Your symptoms are similar to mine, and by that stage I was seriously ill. The doctor who treated me in A&E kept coming to see me to check how I was.

I’m speaking from experience as I too didn’t want to make a fuss and thought I just had a chest infection. Take care.

Hi Lyndsey, how are you feeling now? Did you manage an urgent appt with your GP?

Mickymoo
Mickymoo in reply to Lezzers

Hi lezzers,

Unfortunately not. The gp I want to see is on leave until Monday so I will make an appointment with him Monday. Have no faith unfortunately in the other gps at my practise as I have been fobbed off for over a year by them. It's sad considering it's people's health on the line, but just the way it is. I was told by a gp one time I looked too fit and healthy to have any medical problems until the doctor I saw recently did the appropriate blood tests etc. I feel more positive today as I gave myself a sharp telling off last night for feeling sorry for myself! The worrying was actually driving me mad to the point I was pacing around unable to sit still all week. I had the best nights sleep last night, with no nightmares or waking every hour with every twitch I felt. I feel sleep has maybe a connection to your mood. Hopefully I get the same quality of sleep tonight. My friend gave me a sleeping tablet as I was exhausted waking up so much in the night.

Bit of a strange question but does anyone here every hear their heartbeat , like a swishing heartbeat in their ears? I have been getting this when my heart does like a thud followed by fast heartbeat then goes back to normal beat. Maybe just me???!!

Appreciate your concern lezzers. I love how we can all chat together as we understand how we all feel .

Its days like today I feel there is definitely not something wrong with me. Maybe the furosomide which has been upped is helping my breathing alot. Xx

So glad to hear you're feeling more positive and that you got a good night's sleep, lack of sleep really does affect us a lot. If we're feeling tired not only does it affect our moods & outlook, it magnifys our fears which play on our mind. We then start worrying which then disturbs our sleep, so it's a vicious circle. I don't know bout the heartbeat, though I have heard of something similar before now, but I'm sure someone who does know will be along soon. Xx

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