Who should pre-emptively self-isolate - are there any sources of advice from government or NHS?

[Amikatari]

I was born with a bicuspid aortic valve and had no idea, until I came down with bacterial endocarditis last year aged 44. The valve was regurgitating, making me susceptible to the infection. I had the value replaced with an artificial one via open heart surgery after 6 weeks on IV antibiotics.

I'll always be more susceptible than most to another bout of endo. I'm in two higher-risk groups, firstly because I've had it once already and secondly became of my artificial valve. Bacterial endo was the most horrific thing, but at least there was antibiotic treatment and I luckily survived.

My fear is that if I catch Coronavirus, I could get viral endocarditis and there isn't treatment for that, so I'd die a horrible death! The NHS and BHF have both said I'm at no higher risk of catching the virus itself but that if I did, I'd be at far higher risk of 'complications'. But what complications they might be, no-one will tell me! No one will give me an answer about whether the virus could get into my heart!

I volunteer part time (still too traumatised to look for a job!) in a museum and have already stopped doing front of house or contact with visitors there. I work there behind the scenes now, and also still go to shops, doctor, chemist, market etc. Going out is good for my mental health. My lovely partner's the breadwinner here, usually he travels all over the place for work, but he's been working from home all week, having phone meetings with his customers. He's in good health but is scared of passing it on to me. It's his decision, his employer doesn't know what to suggest, either, but is being supportive. He still goes out to shops etc. We're not really socialising though.

I simply don't know whether I (or my partner) should self-isolate just to be on the safe side, and I can't get an answer from medics, I just go around in circles being referred to government advice etc, but none of it says whether people with health conditions should pre-emptively self-isolate!

Does anyone know of any sources for advice about this situation?

Thanks for reading,

Cathy

[Helen_BHF]

Hi Amikatari - completely understand your concerns, I'm sure you've seen a lot of information in the news and I know it can become overwhelming. Please do take a look at our pinned post with links to current government advice, which is updated daily: healthunlocked.com/bhf/post...

We've also updated our information page: bhf.org.uk/informationsuppo...

[Amikatari in reply to Helen_BHF]

Thanks for your reply, Helen, I'm glad the government has given us some more definitive advice now. I've decided to stop worrying about whether viral endocarditis is a specific risk and just self-isolate/social distance as much as possible anyway. My partner and I aren't going anywhere. I made the decision to have a break from volunteering, and then the museum where I volunteer closed the very next day anyway!

Helen, do you know how I can find out which NHS trusts support self-monitoring of INR, whether they like you to use a specific type of machine, etc? I don't want to go anywhere near the doctors' surgery where I usually get tested. I'm going to buy a Coagucheck anyway I think, but it would be useful to know if they'll support it and prescribe strips on an ongoing basis. I'm under Milton Keynes Trust but can't find any info on their website nor from the surgery.

[mauschen]

I hear your very valid concerns and it’s of no comfort to tell you not to worry, you clearly are worried. However, at the moment doctors treating the patients have little time to document their findings and scientists looking at the virus itself are limited in knowledge.

A few studies are trickling through from Asia but on limited amounts of patients therefore, this information cannot be generalised and it would be wrong of us to take these results as predictable.

We are all at risk of contracting the virus which is why the NHS and government are advising people over the age of 70 years and those with chronic illnesses to be extra vigilant and reduce social contact. Even without the Covid-19 virus, you would fall under the category of those who should be social distancing. This is not going to necessarily prevent you from becoming infected but with good hygiene measures and reduced social contact , you decrease the possibility of coming into contact with the virus.

The doctors are learning every day and we are learning with them. They are building global networks to support each other in practice. If you or I fall ill to this virus, our healthcare professionals around the word are not afraid to ask for help, be reassured that they will do their very best to help us... we can‘t ask for more.

Take care!

[Amikatari in reply to mauschen]

Thank you for your kind reply, Mauschen. The government has given us so much more info since I wrote my post and I feel more empowered to know what to do. I'm social-distancing and self-isolating as much as possible now.

My partner and all his colleagues have been told to work from home and not to travel, thank goodness. The museum where I volunteer has closed for now anyway. I've ordered a ton of meds and will see if the pharmacy can deliver.

I know the NHS and government are doing their best and giving us as much info as they can, and I'm so grateful to the brave healthcare workers who are literally putting their lives on the line to help the rest of us. I've given up worrying specifically about viral endocarditis and I'm just concentrating on trying not to catch Covid-19.

I hear we'll get even more info on Monday about particularly vulnerable groups and am treating myself as though I'm in one anyway until further notice.

I'm lucky really, so many others are more at risk. We don't have kids at school, my partner's not having to go to work, we're not elderly, we've got each other, and we're not in poverty or living in an HMO.

I hope you and your family are as safe and well as possible, sending good wishes x