I've been slightly reeling after receiving a letter from haematology yesterday, stating that I am at risk of severe illness if I catch covid 19. I'm a nurse and have been working on the front line with some infected patients, and initially felt rather cross that I hadn't been informed sooner that I should be shielding. I'm 42, have ET jak2+ on clopidogrel only, and understood from the information provided by MPN voice that I was low risk, hence me continuing to work. However, my haematology department has taken advice from the bloodwise website. What are other people's experiences?
I'm really upset that I won't be able to provide a service as part of the NHS, but my boss says that we must go with the advice in the letter. Of course I want to be safe too, and I know that this appears to be the best course of action, but it all feels a bit surreal at the moment 😕
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LRH1977
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Perhaps MPN voice and the team can provide an update?
I agree it’s ridiculous telling people weeks into the lockdown that they should now shield. Especially for those in key positions such as yourself. I am on aspirin and my haematologist has said same risk as general population.
It was reported in blood wise quite early on in March that all mpn patients were to start shielding.... no matter what your age.... medication or weather you had other medical conditions. It was documented that having a mpn puts you in the “at risk” group.
It is all very confusing and some consistent advice would definitely be helpful. I am also 42, MPN unclassified, and on clopidogrel to mitigate risks from my high platelet count, so like you have assumed I am low risk. I was due at the hospital for my regular blood test on the 15th April and when my haemotologist called to cancel my appointment and I asked whether I should be worried, he said just to carefully follow general social distancing advice!
We just have to follow the advice given as best we can, but that would be a lot easier if the advice followed some sort of set rules.
Sorry to hear that you can't help out for the moment, but just want to say a big thank you for your work up until now!
That must have made you feel totally confused....it’s amazing the contradictory advice we hear. I suppose the levels of risk are so varied, but even so, one would think there would be a base line to follow for all.
Know how you feel, I still have not received my letter so really unsure if I should be isolating, although I have locked myself down for the last five weeks, and hubby going out to do shopping when needed.
Hi, I have post ET MF and I’m on 2 immunosuppressive drugs. Here in the US, we don’t get letters. We have to decide for ourselves. I’ve been self-isolating for a month now, but I walk about 2 miles every other day. We always practice social distancing. I worry more about him since he goes to physical therapy and sometimes stops at a grocery store on the way home. I did go see my hematologist last week for a routine visit, but they had a lot of precautions in place and I felt very safe.
Thank you for your replies, I'm going to email my consultant direct to get advice, as there does seem to be so much conflicting information across the UK. I'll let you know what I hear!
Yes please do let us know what the hemotologist says LRH1977 that would be most appreciated.
I have ET jak2+ on aspirin alone and have been told by my heomotologist I'm not not high risk as not taking hydroxy yet. My GP isn't sure ? Thinks I might fall into the slightly higher risk bracket? Which I would have took as fact however I've read most of the posts on here over the past few weeks and they are all conflicting. Initially I thought it appears to be the medication that puts you at more risk but then read posts from mpners on aspirin alone, no other medical conditions being told they are higher risk and should isolate for 12 weeks. Read one post where they were told it's not the medication that puts you at higher risk of complications should you get caronravirus it's the condition itself?? None of the advice is clear and contradicts itself. I totally appreciate it's a new virus with little known about it but the advice being given to people should be consistent and the lack of clarity is concerning and increases anxiety.
If MPNs are classed as blood cancer and the government says all blood cancers are extremely vulnerable and it doesn't matter what stage or what treatment you are on then everyone with an MPN should receive a letter. It shouldn't be down to the whim of the haematoligist.
When I ask my gp any thing they sometimes reach for a big thick book, look up PV and there's a section there about as big as my thumb nail. They then say, don't know much about it and speak to haematoligist. Must admit I have a lot of faith in my haematoligist, she never misses a thing, even non blood related if it's in my file. Anyway keep safe.
The same thing has happened to me, I was working in a hospital then received the letter telling me I am vulnerable last Thursday and need to shield for 12 weeks (I have ET jak2 positive on aspirin only). I was also upset as I wanted to work.
I did check with my haematology team as only a few weeks ago I was told by them it was ok to carry on working. She explained the letter is right as after my appointment with her the guidelines had changed and you are vulnerable whether on medication or not.
Thank you, that's really helpful, and so much clearer than what I've been told - my haematologist got back to me and was very non committal - he basically said that there was so much conflicting advice, and that it's my call whether I shield or not! Not terribly helpful, but I obviously want to be safe, so I'm going to take the advice and protect myself.
Essentially it does mean we're not supposed to go outside, although does encourage getting out into the garden if you have one. Personally, I'm getting up very early to take my dog for walks, otherwise I'll be suffering with mental health problems very quickly. If I do come across other people on my walks, I'm just keeping well away... I did Google 'coronavirus and MPN' and an MPN voice page came up dated 30th March which says we are classified as extremely vulnerable - mpnvoice.org.uk/coronavirus...
- which I'm rather upset we hadn't been informed about sooner... Did anyone else get the email before that, which classed those of us taking anticoagulants only as low risk? That's why I was still working!
I'm going to be listening to the webinar on 28th to see what the experts say.
I did read the advice from MPN but for me it wasn't very clear as initially it said the government had Classified all blood cancers including MPN s as extremely vulnerable but then at the bottom said there's no evidence people under 70 with ET or PV on aspirin alone or blood thinners Are at increased risk of covid19 than the general population? It's not clear if this meant catching the virus or becoming extremely ill if you do catch it? I don't know others think?
I too will listen to the webinar and hopefully things will become clearer.
I got my letter from the NHS today stating I am in the extremely vulnerable group and must stay in and avoid all face to face contact. I'm on hydroxycarbromide and asprin. I'm due a blood test. Last time a district nurse came to my house. She wore a mask and had not been tested. I'm dreading it.
I have monthly blood tests. The district nurse that came to me was totally covered. I felt quite comfortable with it. I would rather that than go to the surgery.
I rang my GP on Tuesday to say I hadn't received a letter and was having difficulty getting supermarket deliveries. I am 87 with ET Calr on HU living on my own. She simply said I'll put one in the post today and it arrived on Thursday. The only supermarket that recognised me as vulnerable was Iceland so I ordered groceries that afternoon and I am having a delivery in the morning. I don't understand why I hadn't received a letter before as the haematologist had already contacted her about my medication and asking her to arrange a home visit for a blood test before my next telephone appt.
Hi. My consultant said there was a blanket letter and she was then discussing individual cases depending on our severity of illness and circumstances. Hope that helps you not to worry that you have been working. Jx
Hi LRH1977, I have ET Jak2+ and I’m on hydroxycarbamide and aspirin. Just over 5 weeks ago I had my last phone consultation and as things were as clear as mud with our vulnerability our asked my haemo where I slotted in. With the results of my blood test I was told that I was at no further risk than somebody with good health and just practice good social distancing and hand washing as everyone has been advised. So on that note I’ve carried on working and practicing the advice.
It does seem that advice is changing though, and I think that's why I've only just got a letter through from the haematology department. It also seems that advice across the country is different, so all very confusing...
I haven’t received a letter either. However, I have had two phone calls from my GPs, one last week asking how I was and was I self isolating and then another call yesterday asking for consent to share my medical records to hospitals and 111. I always thought they could access our records????
You'd imagine so wouldn't you? But GPs and hospitals all seem to use different systems, so our records are rarely available to all that need to see them!
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