So fed up and tired

[Liss-x30]

hi everyone,

I mentioned in my previous post that I have recurring pericarditis, and today I’ve hit my limit and am utterly fed up.

I’m currently having another flare up, and am in agony, lying down is so painful that I can’t sleep, and I’m just so so tired. I’m trying to manage at home as I’m so desperate to stay out of the hospital as there’s no process and I have to go through A&E each time even though it’s a diagnosed condition and it just breaks my mental health being told 50 different things when I keep saying it’s pericarditis and I don’t need to be triaged for a heart attack!!

I’m meant to be an outpatient of St Bart’s London (they did my valve replacement) but they want nothing to do with me, so this is all being managed by Watford General even though they aren’t a heart specialist . They’ve now referred me to rheumatology even though all my autoimmune tests came back negative. Last month I was told I was having a CT scan to check for cancer, I called and called and then only when I said the docotor was told the radiologist “rejected” with no reason why. This was already distressing and now I’m just left in limbo! No one from the cardiology team at Watford are now helping me, even though this affects my heart. I’m getting scared that this won’t ever go away.

I feel devastated and unsupported that I’m just being pinged about and no one is helping me understand why my pericarditis keeps coming back or how to treat it.

I’m in so much despair now I’ve decided to see if I can switch to Harefield, has anyone ever changed hospitals and no how to go about it? I tried at my GP and all they kept asking me was, was why I was taking Warfarin!!

Any help would be so gratefully appreciated, because I just can’t live in with this constant pain anymore

Liss x

[Yumz199725]

Ahhh hun you poor thing. 💔😞😟. Hopefully your able to be transferred to a different hospital that can help treat your pericarditis? X

[Liss-x30 in reply to Yumz199725]

Thank you! I am giving Barts another go, but if I can't get anyone to speak to me then I am definitely asking to move. Hope you are doing okay x

[Yumz199725 in reply to Liss-x30]

Ah your so good giving them a second chance hope they don't let you down x. Yeah I'm good I did actually try to transfer from st barts but I can't until I know longer need to be under there care and when I don't it will either be basildon or Cambridge! Both way too far 😐💔. So just sticking with st barts for now! X

[MummaSoap]

Hi Liss

This sounds like a living hell; I can really hear your frustration and desperation, I think I would be feeling the same!

I’m sorry, I can’t provide any personal experience of switching hospitals but hopefully someone with relevant knowledge to share will be along soon 🤞🏼🤞🏼

I just wanted to say that I’m sorry you’re going through this but that you are not alone and I really hope that you get the support you need to fully understand the underlying cause behind your recurring pericarditis!

Would it be worth contacting the BHF Nurse line to see whether they can support you with a request to transfer to another hospital, even if it’s just to outline how you might put the wheels in motion?

Please keep us updated with how you get on, you’ll be in my thoughts.

Best wishes

Soap 🧼

[Liss-x30 in reply to MummaSoap]

Thank you so much soap for your reply!

I emailed the BHF nurse line yesterday, thank you so much for this suggestion, fingers crossed they get back to me. I think its just because I am only 30 and was promised this new life after getting a new valve at aged 28, that i am so frustrated as everything has been a disaster since But trying to keep positive x

[Captain_Birdseye]

Hiya

I also have recurrent myopericarditis and currently undergoing tests to see if I've any autoimmune issues underlying.

The pain is dreadful during a flare up - I use heat pads as this gives some relief and sleep with a wedge pillow on my right. I wouldn't wish the pain on anyone, it's quite unique.

I stopped going to A&E as well as there's nothing they can really do - I've been advised only to present if there's a change, or if the pain is unusual for me (what a situation).

Due to long wait times, I opted to go private for investigations, however this does cause communication issues between the private sector cardiologist and NHS depending on who you get.

You've been passed from pillar to post by the look of it... have you considered contacting PALS (assuming you are in England).

[Liss-x30 in reply to Captain_Birdseye]

Oh gosh, I am so sorry to hear you have myopericarditis, if you don't mind me asking do you know what triggered it? How do you cope with the pain? Typically how long does a flare up last? Sorry for all these questions its just I haven't met anyone with this before and keen to know how you are finding it.

The pain is horrendous, and I feel isolated at the moment cause I feel people think you are making it up or its like heart burn pain, when it couldn't be any further away from that. Its like an all consuming pain and the kicker is its worse lying down, so you can't even get any proper rest! Sorry you are going through it too.

It's such a shame that we are at a point where the NHS is just so broken that we have to resort to private, but I am so desperate for answers that if it means paying I will have to at least try. Yes I am in England, well I don't know where to start with PALS, as its really fault of St Barts in London for refusing to take this case on, and Watford being so overwhelmed and slow, all just a bit of a mess really

[Captain_Birdseye in reply to Liss-x30]

Hiya,

There's so little information out there isn't there... and really difficult to explain why it's so debilitating given that so many people haven't heard of it, never mind experienced it.

Mine was viral (virus that can't be named). My GP did give me prescription cocodamol but I try not to take this - I've got colchicine (anti inflammatory but not a painkiller) and alternate ibuprofen and paracetamol... it doesn't really touch the chest pain but helps with the headaches and arm pain that come with.

I've used heat packs and hot water bottles, this gives some relief.

I currently use a wedge pillow at night, but during the bad flare ups I would have to sort of drape myself over the back of the sofa to sleep upright... it obviously wasn't a good sleep, but I got some that way.

The worst flare up lasted about 2 months, I was struggling to breathe even sitting back on the sofa and thought I had heart failure... I couldn't be seen by a doctor. That's when I went private and was recommended longer term colchicine... I noticed a difference after about 2 weeks, it was like night and day.

Since then, my flares have been a few days at most and involve pain, but not the bad breathing.

[Ethel14]

I had Colchicine for Pericarditis on my second heart attack

[Hidden]

contact Dr Lyon at the Brompton- or Dr Pantazis they are doing a trial at the end of the year of a biologic I think anakinra

[Deejay62]

Hi sorry to hear what you’re going through it sounds terrible.

Can you see your doctor and ask to be referred to Harefield, Bart’s or both if they can. Tell them you can’t take the pain anymore.

Even A&E can refer you to specialists.

If not someone on here mentioned PALS.

I know some of these hospitals are now rejecting cases.

I know people having TIAs who have been rejected by certain hospitals. It’s terrible.

I hope it gets sorted out. All the best.

[HHH2017]

Im so very sorry to hear this and really feel for you.

I have had myocarditis and pericarditis so have some idea how you must feel (in a small way).

My bro in law has suffered recurrences of pericarditis and it was actually the clinic for 'people who have had that illness that cannot be named' - and have taken a long time to recover from - well that clinic really helped him 🤦🏽‍♀️ If you have had that too perhaps your gp could refer you to the long clinic.

I was advised by my cardiologist to raise the head end of my bed and this has helped me, might be worth a try. I feel i get less chest pain now.

[Autumn_Leaves]

The illness that “cannot be named” has caused cardiac issues for many people and it’s important that people can access the specialist clinics for the long haulers, although I appreciate that demand is high and the provision of this care is very patchy throughout the country. Please leave no stone unturned. You only have one heart and it’s terrifying when it goes wrong. If you are still a young person then please seek help. It’s no way to live.

[Pefki]

As a fellow St Barts patient with a mechanical valve since mid April, I wanted to see if things have improved since this post. Are you doing better?

[Golf1985]

hello,can I ask how your getting on with the peri I’m in the same boat,but feel colchicine isn’t working and has given me gut and bowl problems so trying to taper but after 4 months it’s still showing on ecg so have no choice,I’m going to try ibuprofen with it I think and a stomach protecter as I’ve not been on one