Pericarditis

[Philra]

Please add Pericarditis to the topics list on health unlocked.

Ps I’m aware you have articles on the main site about Pericarditis. However for completeness Pericarditis needs to be added to the health unlocked topics list.

[Dockdog]

Hi Philra,

I absolutely agree with you. Pericarditis seems to be the poor relative in heart functions and diagnosis. Why? Well in my case it took 4 to 5 years to get a diagnosis for Constrictive Pericarditis because outside of the main cities in the UK few cardiologists are aware let alone GP's. The problem is a lot of symptoms mimic others so in the absence of experience you get shoved from one consultant to another, all looking in their tick box kit with resulting tests that prove negative for their favoured choice! So one goes from pillar to post getting nowhere! I finally had to tell my GP having looked up the symptoms against my own working life ( a lot of time in the Middle East) and having had an operation to explore if I had lung cancer due to severe pleural effusion in my right lung and the lung glued to the rib cage. It just transferred the effusion to my left lung! Then it was onto strange liver enzyme readings so off to a Gastroenterology Consultant who was brilliant and after a biopsy found I had liver scarring ( cirrhosis) caused not by alcohol but by portal vein pressure so at last pointing to my heart having issues. Finally I went private to Benenden to see a general physician who really took note of all the symptoms and introduced me to a colleague who he felt might be able to assist; indeed he did having done his training at the Royal Brompton in London, I had a computerised MRI scan arranged and paid for by Benenden at the Brompton which confirmed his diagnosis of CP and at last I was on the right track. He had only seen one other case involving someone who spent time in the Mid East and felt it had been caused by a parasite in the water over there. A lot of people get this in the Mid East /Asia and it is surely something more GP's need to learn about as well as Consultants to look outside the box. It ended well for me with a pericardectomy finally but a lot of damage done meantime to my system due to Constrictive Pericarditis not being diagnosed earlier.

Hoping this helps your thoughts. Best wishes.

[Philra in reply to Dockdog]

Hi

Sounds like you’ve been through the mill. I’ve had a pericardioectomy too at the Liverpool Heart & Chest Hospital two years ago. I first became afflicted with Pericarditis after we’d been on holiday to Cyprus. It seems that I picked up a virus there that kicked off my Pericarditis.

Best wishes

[Dockdog in reply to Philra]

Hi Philra,

Thanks and so glad you have come through the op ok. I spent a lot of time in Cyprus working and when I contracted Pericarditis I had just returned from Dubai which was put down to a bacteria but nobody linked it to the later Constrictive Pericarditis as a possible origin. Nobody in my hospital in Kent ever thought of that but there it was sitting in my hospital records! Anyway, job done. I hope you have made a very good recovery.

Kind regards, Richard

[Philra in reply to Dockdog]

Thanks Richard

It took over a year for my Pericarditis to be first diagnosed. Ultimately comparison of CT scans showed that my pericardium

had greatly thickened. I’m incidentally you are welcome to join the site below regarding patients who’ve had or are considering having a Pericardioectomy. I’m one of the site admins:

facebook.com/groups/1755692...

Best wishes

Phil

[sdv37064 in reply to Dockdog]

Currently living in Spain, I was told I had a ´heart crisis´in May 2018 - had no idea what they were talking about even after 5 visits to the hospital emergency room with someone who speaks Spanish. Everyone kept telling me that I was fine. After seeing me so often, one ER doctor said ´´my instinct tells me you´re not fine´´ (really?) He called the head of cardiology who confirmed pericarditis. She advised that I had probably first had it as far back as 2014 when I got pleurisy after the flu shot - and a very bad car accident with chest trauma. Four YEARS of going to my UK GP with symptoms that we put down to menopause and stress. Living in rural Spain offers little of no opportunity for feedback and advice so my treatment has been very hit and miss. Latest advise from a leading German cardiologist who lives here..´´come back in a couple of years - this is not something you need to even think about!´´

So, what now? The wonderful FB group for support and additional dietary recommendations. - along with a food diary monitoring symptoms

NO chilli, salt, sugar, alcohol, meat, black pepper and very little gluten. (This is torture for a half Indian foodie) ADD fresh turmeric and ginger where possible. I take 500u of magnesium/day along with B12 and Vit C and fresh thyme

Prior to May I walked/ran 5km/day. I´ve gone from struggling to taking the bins out to now 3,000 - 5,000 STEPS a day but slowly. Always sleep on my left side slightly elevated.

The thought that this condition has gone largely unnoticed or ignored is very disturbing.

Hopefully this forum will help

Good luck everyone - be strong

[Philra in reply to sdv37064]

Many thanks for your post. Like you I struggled to get the right treatment. It took over a year for my Pericarditis to be diagnosed. An astute cardiologist spotted from comparing scans that my pericardium had thickened. Then I started getting effusions including one that caused severe compression of my heart. Ultimately I had to have a Pericardioectomy.

[JulesLulu72]

My mum and brother both have recurrent Pericarditis. My mum has had great treatment from cardio at The Royal in Hampstead but my young brother (only 34) has been continually fobbed off as his hospitql think he is "too young" to have it. My mum's cardio said very early research shows that a faulty gene may mqke ypu more susceptible.

[Philra in reply to JulesLulu72]

So sorry you’ve both got peri. My family going back generations has been afflicted with type 1 diabetes (a genetic autoimmune disease).

I’ve wondered if my Pericarditis was/is linked to that genetic prob.

[Hayleyw222]

I completely agree, medical staff as well as the general public need to be made aware of Pericarditis and all of its symptoms especially people in the medical field who at present overall do not appear to be educated fully on this illness as it seems to be misdiagnosed a lot or only diagnosed once all other illnesses with similar symptoms have already been ruled out. The lack of education and awareness of Pericarditis and its different strains are costing people their lives...My family found this out the hard way recently and it has destroyed us as a result especially knowing that if diagnosed correctly when the symptoms first appeared (or even months after!!!) our dad would still be here. My dad Trevor who was 60 years old was ill for just over a year, he felt constantly tired and breathless and had flu like symptoms, over time he got worse, he lost so much weight and although he continued to go to work as a bricklayer he struggled every single day. He went to the doctors often and was constantly being sent for tests but no one could figure out what was wrong. He previously suffered with arthritis for years. My dad was fading away and over and over again he was sent away from the doctors, in september he was given milkshakes to drink daily as he could no longer stand to eat and had become malnurished. On my birthday october 26th last year my dad walked into A and E with a swollen stomach and legs and pain in his chest, he had been at work all day and simply couldnt cope anymore with not knowing what was wrong with him. For a month almost he was in Torbay hospital, they did several things to drain the fluid off his chest and stomach but little else. He started seeing a specialist cardiologist who took chest xrays etc but still no one seemed to know what was wrong, we were told it wasnt critical and they needed to remove the fluid before they could do further tests. On the 22nd of November we were called at home by Torbay and asked to come in, where we were told my dads condition had worsened and it was too late, my dads organs would ultimately shut down and he would pass away within days. We were horrified and in complete shock, the doctor apologized to my dad who looked so scared, ill never forget that moment. The next morning they told us that a cardiolgist down at Derriford had looked at my dads chest xrays and diagnosed constrictive pericarditis and if they could stabilise my dad he would be willing to operate. My dad was taken to derriford in an ambulance, he asked us not to go down until the following morning as he was so tired and had not had proper sleep for weeks, the operation was penciled in for the next morning. By the time we got down to Derriford my dad was on life support as his blood pressure had dropped and the night before he had called a nurse panicking after he was sick, the fluid from his tummy had gone up into his lungs. My brother flew over from Australia and all four of us adult children and my dads own father stayed with him through out this period. We met with the cardiolgist who apologized and explained it was no longer viable to operate, he couldnt believe no one had diagnosed pericarditis before due to my dads textbook symptoms and said if he had seen my dad even days earlier the outcome could have been different but at this stage it was just too late. On the 24th of November we stood around my dads bed and just over an hour after they turned off the machines my dad passed away. I was a week away from giving birth to my third child, my dad never got to meet his ninth grandchild or to see my brother from Australia who he hadnt seen for years (he was in a coma before my brother could get here), we are left so confused and angry, we feel like he was messed around for over a year while he just worse and worse when now we know more about the condition it was clear that was what he was suffering from. I miss my dad so much and the grief is made worse because there are so many unanswered questions, Derriford have been great and were fantastic right up until the end with my dad, however Torbay have closed ranks and are refusing us my dads medical records and so far havent even acknowledged his death. When clearing out my dads flat we found a letter from a doctor to Torbay hospital dated october, it stated that this doctor suspected pericarditis and asked the hospital to look after this chap and make sure he got the relevant tests and treatment, yet no one did. I just feel so robbed, i dont know how to deal with any of this.

[Philra]

Hi Hayley

I’m so so sorry regarding your tragic news. I think we’ve liaised on the UK Pericarditis Group Facebook site. At some point the public needs to be made aware of Pericarditis. Two years ago I tried to get Pericarditis raised as an item on BBC Breakfast TV and ITV morning news with unfortunately no success. My own experience of Constrictive Pericarditis although not comparable with what you’ve experienced with your father has been awful. It took over 18 months for a diagnosis to be made. I was so ill I had to leave a job I loved. I was blue lighted in an ambulance to Hospital on one occasion when my heart was in severe constriction (Tamponade). After 5 years of being afflicted with the condition I had a Pericardioectomy two years ago. Since then I’m much better. However I still get very angry when I see others suffering from Pericarditis especially when the right treatment protocols set out in the European Cardiology Guidelines often arn’t followed. Largely due to lack of awareness amongst many in the medical community.

Kind regards

Phil