Definitely Broken

[Delamere]

Well had Echo. Result right side heart failure not what anyone wants to hear. Did the normal panic research frightened myself when will l learn. Just wondered if any of my lung buddies cope with this and severe brochiechtasis ?

[sassy59]

Bless you Delamere, definitely not what you want to hear. I’m sending lots of love to you and hoping you get other replies soon. Xxx💜

[cofdrop-UK]

Oh no! Sorry to hear this Delamere. Hope you get some positive replies.

Cx

[Hidden]

If by left side heart failure you mean dilated cardiomyopthy in which the left ventricle does not work properly then yes. I was diagnosed in 2013 and with AF. As you know I have lifelong bronch. It was controlled with drugs since then but needed a biventricular pacemaker this year. There has been quite a saga to my actually having this fitted but it is now in place and I believe is making a difference. Of course left side heart failure can be due to other factors. Whatever it is I hope that they can help you to feel better.

[Hidden]

I'm half asleep and got my lefts and rights mixed up. ! I hope that they can treat right side heart failure as well as they have treated my left side heart failure. Good luck!

[Delamere in reply to Hidden]

Thankyou sleep tight x

[Hidden in reply to Delamere]

At least you stuck to your guns and have found out what you are dealing with. Having bronch shouldn’t make a difference to the treatment. At least it didn’t for me. After three years of telling everybody that I had a different type of breathlessness and swollen ankles I felt better as soon as I had a proper diagnosis and started the meds. 🤞🏻For you too.

[Delamere in reply to Hidden]

Thankyou. I nearly tore up letter requesting referral to bronch specialist thinking what's the point if heart is giving up !! Then l thought no surely they must have experience of people with these issues x

[Hidden in reply to Delamere]

Oh yes you are going to need the bronch specialist more now because if you can keep your bronch on an even keel it lessens the symptoms of tiredness and breathlessness all round. Make sure that you have a good cardiologist as well. So you don't get thrown ad hoc into the care of docs who don't know you. My consultants talk to each other.

[Delamere in reply to Hidden]

They haven't said anything about referring me to a cardiologist ?

[Hidden in reply to Delamere]

With heart failure you are going to need one. See what they say when they discharge you. I went privately twice a year and had the benefit of face to face and an echo every year or 6 mths. Plus excellent drug treatment. For what it costs it's worth it and puts you in control. You could also get your GP to refer you to NHS cardiologis but you never know if you are actually going to see the consultant or one of his minions.

[Delamere in reply to Hidden]

Thank you will chase it up tomorrow. Arguing over CT scan now should have had it today but wouldn't do it as l have an infection told them l will always have some infection as l have colonised pseudomonas. Need a wall to bang my head off or theirs !

[Hidden in reply to Delamere]

Oh my stars isn't it awful when you are being controlled by people who know less than u do about your condition! Such is the world of the bronch 😰

[Delamere in reply to Hidden]

It is and icing on cake is the otherv2 ladies on my ward have dementia and are struggling with it at the moment poor things crying one minute shouting next so confused. As a carer it breaks my heart l can't help them. Making me feel really useless. Now l am cross with myself for moaning when you have been so kind x

[Hidden in reply to Delamere]

That's what we are here for. Being in hospital is awful enough without the lack of control, frustrations and uncertainty. I know what you mean about the dementia patients as the ward I was in last nov was full of them. It was chaotic for the nurses and frightening for them. Moan away dear Delamere but do remember that you need to be kind to yourself so that you can get out of there and back to your own world where you can organise your best ongoing treatment and care. Knowledge is power. Power and control is security and happiness.xx

[Delamere in reply to Hidden]

Wise words x

[Maricopa in reply to Delamere]

The most common cause of right sided heart failure is left sided heart failure. The swelling of the legs etc…. You definitely need a good cardiologist!!!

[Delamere in reply to Maricopa]

Thank you

[Tykelady in reply to Delamere]

I went in in May and was given the same diagnosis. Cardiac team liaised with respiratory team and the result was that I would stay with respiratory and my GP as the heart failure was caused by my struggle to breathe. I was sent home with 24/7 oxygen and the recommendation that a recurrence of symptoms would necessitate being referred to cardiac clinic. On the plus side, my week in hospital on diuretics and restricted fluids resulted in a 10lb weight loss from my swollen legs. Sadly it's back with my now restricted mobility but it's not fluid now, it's fat.

[Delamere in reply to Tykelady]

Thankyou for replying l am already on 24/7 oxygen and struggling to come off the dreaded steroids hoping now l have been diagnosed heart can be treated and will no longer need steroids or not as often which means my weight will drop x

[Damon1864 Volunteer]

Good luck Delamere, thinking of and sending. Love and hugs have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx

[Patk1]

Try not to worry.theyll talk u thro it it accounts for yr fluid buildup.u can live with it.sometimes lungs can cause it,due to backlog of fluid+ "additional strain" it places on the heart,over time.Its a diagnosis more for drs, to account for certain symptoms xxx

[Lemon7]

Sending good wishes to you. I don't have knowledge to share but hopefully someone will be able to help and answer soon.

[peege]

So sorry to hear this Delamere although I'm so pleased that you have had the scans and that at least you know (or you will do if you can get information from the cardiologist) what you're dealing with.....thank heavens for Littlepom !Thinking of you lovely , hugs too and hope you sleep alright tonight. Peege ×××××

[Delamere in reply to peege]

Thankyou so much for your kind thoughts x

[CDPO16]

Thinking of you and hoping that you get some peace and sleep tonight xx

[Patk1]

I hope the other ladies let u sleep tonight xxxx

[Katinka46]

So sorry to hear this. You have enough to cope with. What is the cause? Is it pulmonary hypertension caused by the lung problems? If so you need to be seen by the PH specialists.

Love

Kate xxx

[Delamere in reply to Katinka46]

I think so will find out more today x

[Katinka46 in reply to Delamere]

If it is that then the echo will show raised pulmonary arterial pressure. Are you in Scotland? I think the PH centre is Glasgow. Bronch specialist in Edinburgh…. Hmmm…🤔🤨Whatever it is I am a great believer in knowing what it is.

All the best on your tricky journey.

Love

Kate xxx

[Delamere in reply to Katinka46]

I am have just found out Bronch specialist is in Edinburgh ! It is a long journey having to fight for every diagnosis. X

[Katinka46 in reply to Delamere]

I soooo identify with that. I have written mine up. You are welcome to read it. Others here have. Caveat: it is long. I can PM you with my email address if you are interested. Have you written about your saga? For me it helps, kind of stops things going round endlessly in my head. Lots if love and gentle hugs

Kate xx

[Delamere in reply to Katinka46]

Please send me email l would love to read it. I only really comment on it on this site when l become so frustrated and down. Not very good at sharing problems more used to solving them. Have felt really supported by members on this site it really helps x

[Katinka46 in reply to Delamere]

Done. Looking forward to hearing from you.Kx

[Alberta56]

So sorry you've had another set back. Lung and cardio problems seem to go together unfortunately. Trust Littlepom is right (or perhaps that your doctors know as much as she does) and they can fix the heart problem. Not that you need more interventions, but keep fighting strong lady. You are an example to all of us. xxx💐🌸🌺🌻🍀

[Delamere in reply to Alberta56]

Thank you so much for your support. Not much of an example l am afraid all l do is moan x

[Alberta56 in reply to Delamere]

I had an episode last Wednesday when I was confronted by a jobsworth and felt inclined to snivel. I thought 'that's no good. What would lung buddies do?' Luckily perhaps Mr. Jobsworth grudgingly found a way to oblige us or he might have got a mouthful of Christine in full flow at top volume. Ex school teacher volume control is very good on occasions, in spite of the bronch. That's what I mean by needing the example of lung buddies - bless you all.😃😄😂

[Delamere in reply to Alberta56]

Oh yes with you all the way !

[HungryHufflepuff]

So much for you to deal with. Sending you lots of good wishes and sheepy hugs 🐑🐑🐑🐑🐑🐑

[Matt6096]

Hi, I’ve had brochiechtasis for about 20 years and was diagnosed with heart failure. I was the same as you and used Dr Google, worst mistake of my life, I though my life was over. I’ve since found out that I should know better, I’ve been living pretty well with heart failure, once they got all my heart failure meds sorted out anyway, and apart from a few ups and downs things have been good. Don’t panic, things are never as bad as they seem and stay strong.

[Delamere in reply to Matt6096]

Thankyou so much for such a positive reply. Could l just ask who sorted out your heart meds was it a cardio specialist ?

[Matt6096]

Your welcome, it was a combination of cardiologist and heart failure nurses at the Royal Brompton. It took a while to titration up to the doses I’m on now, which did make me tired a lot to start with but that didn’t last too long.

[Delamere in reply to Matt6096]

Thankyou again will push for referral when consultant does rounds this morning

[Matt6096 in reply to Delamere]

Good luck and I would definitely push for it.

[Ragrug]

So sorry Delamere here I was whingeing about my problems and not yours.Good that you have a result And good news from the group, they seem positiveBest luck

Ragrug

[helenlw7]

So sorry to read this, not the news you wanted to hear, Delamere, but I’ve read lots of positive comments here from your friends. Sending you gentle hugs.

[Walkwalkwalk]

Ah Delamere that you didn’t want to hear. I hope that at least you are using the time to rest My consultant recently was moving me clearly to a position of end stage diagnosis of IPF.and although I am certainly getting there it seemed to me that secondary problems could be a factor in my deteriorating condition.

One of the secondary problems that have come up after AFib and pericarditis is pulmonary hypertension. As well as no more function tests there was no plan to check on the PH. After a long discussion mainly interspersed with my ‘why’s’ I have a referral to a PH specialist and another echocardiogram has been done. I will wait for the results of that and see how it can be influenced.

Do go down the route of getting specialist input. Our respiratory teams are great but when these additional problems arise they need additional treatment or possibly can be mistaken for exacerbation.

I do hope that you get the help you are looking for

My very best wishes

Grace

[Delamere in reply to Walkwalkwalk]

I hope things work out for you. I am becoming more and more convinced that this end of life discussion is a box ticking exercise. Trying not to put too much emphasis on it !

[Dedalus]

Hope you get everything sorted and get proper meds etc soon. Sending hugs x

[watergazer]

Sending you hugs Delamere. Xx🤗🤗

[HollyBoyd]

Hi Delamere. You have had a really rough time lately and now this. I do hope you can get some answers and also the right treatment. Good luck with access to specialists. Sending lots of good wishes to you, take care xxx❤️😊

[Delamere in reply to HollyBoyd]

Thankyou for your support x

[jackdup]

Did you have unexplained symptoms that led to having the echo? I had an echo at the beginning of Nov last year because of symptoms I had that I didn’t think were heart related but went for the echo to rule out heart problems. I was told I was borderline with an EF of 41%. Borderline is 41-50% and below 41% is heart failure, but was told I may have had a previous heart attach or blocked arteries that would account for the low EF. They sent me for a cardiolite to see if I had blocked arteries or heart damage but took about six weeks to get in for the test. I received the results in early January and my arteries were fine as was my heart. They repeated the echo in Feb and found my EF was 61% which is normal so spent 3 months doing nothing strenuous and taking a bunch of medications for heart failure only to find out I didn’t have a problem. During that period I was told that with treatments nowadays heart failure can generally be treated pretty effectively. I hope and pray you get in to see a cardiologist soon to setup a treatment plan.

[Delamere in reply to jackdup]

Thankyou so much for taking the time to reply. I just felt different this time not normal breathlessness that l have during flare up. Fingers crossed some treatment will start when l have finished one lot of antibiotics as diuretics can not be taken with them x

[jackdup in reply to Delamere]

Good luck and please let us know where things go from here. I think I know how you feel after my initial diagnosis last year.

[Delamere in reply to jackdup]

Will do

[Carnival567]

I have right sided heart failure too, plus bronchiectasis obliterative bronchiolitis pulmonary fibrosis and pulmonary hypertension. I do sympathise with you, but as long as you follow your doctor’s advice it is not the end of the world yet. I wish you all the best, and don’t listen to Doctor Google x

[Delamere in reply to Carnival567]

Thankyou x

[Izb1]

Wish you all the best Delamere and hope things can be sorted for you quickly so you can get home. Love and hugs x

[Delamere in reply to Izb1]

Thank you x

[Thepainterswife]

My husband is in hospital and has just had the scan , no results yet . Years ago we were told the right side of his heart was slightly swollen so I wouldn’t be surprised if that is worse now . He has emphysema. Sorry I can’t offer advice but I’ll say to you what I said to him when he was obviously worried sick saying “ that’s all I need the lungs are barely functioning and now my hearts going the same way “. I said whatever the results we need to know what we’re dealing with and then take all the advice and treatment we’re offered in the hope that quality of life can be improved 😊 I know how worrying this must be for you but please stay positive , it’s amazing what medical science can do these days . Sending love, hugs and prayers xxx

[Delamere in reply to Thepainterswife]

Thankyou that is very true. I find once l know what l am dealing with l can cope and take back control x

[Thepainterswife in reply to Delamere]

Exactly 😊 don’t go looking for trouble but if it comes to your door you’ve no option but to deal with it and you can do it 💪 xx

[Ergendl]

Big virtual ((((hugs)))). Hope the diagnosis leads to new treatments that will make you feel better.

[Delamere in reply to Ergendl]

Thankyou for your kind thoughts x

[JenWro]

My mother had only a third of her heart working for many years and had a happy long life after diagnosis. She had the diagnosis at 54 and passed away at 76. Medication, a need to slow down and behave was in order. Go for all the examinations and appointments Everything will be explained in steps for the bigger picture to be clearer. Hope this helps

[Delamere in reply to JenWro]

Thankyou so much that really helps. 5 days after diagnosis still awaiting treatment !!! Wouldn't be so bad if l wasn't in hospital if you can't get treatment here where can you get it ? x

[JenWro in reply to JenWro]

Delamere. How are you? How did you get on ? Been thinking about you today ?