MPN not to shield or even high risk according to my consultant.

[Lainy1]

This is what I was told this morning by my consultant. Pointed out Scottish government stated blood cancers at any stage say high risk and even NHS infom states ALL BLOOD CANCERS are high risk too.. gp says I'm high risk but won't give me a letter to say this... nobody knows what the other is doing. Total mess☹

[Vtr1000]

Hi Lainy, I was told at the beginning I’m at no more risk than anybody else by haemo and gp. (ET Jak2 + taking hydroxycarbamide and aspirin). Just to practice social distancing. It was a bit concerning in the beginning as on here I was told I should be shielding. It was as clear as mud at the beginning and I’m afraid it hasn’t changed. I believe you’re a nurse which means it’s more concerning for you.

[Lainy1 in reply to Vtr1000]

Thanks for reply, yes I am and I'm afraid it's not any clearer for me either. Not had my bloods checked since Feb either so I'm worried about my neutrophils being low. I wish the guidelines were much clearer. Why are some MPN patients getting shielding letters or even high risk ones from their GP ? And some aren't. It did say on Scottish gov that ALL BLOOD CANCERS were to shield. I told my boss this and she said it's changing daily. Got my union onto it now.

[Scottishterrier]

Hi LAINY

Dad has PV and I have ET we got our letters from the NHS on April 1st that we are in high risk category because we are both on Hydroxycarbamide last week on the daily update Nicola Sturgeon said we are still shielding till 18th June great way to spend my Birthday must be the last three digits 666 i am unsure if it was gp or Consultant who recommended we Shield

Stay safe

Scottish Terrier

[Lainy1 in reply to Scottishterrier]

Hi, that's great you are shielding. People/patients are not being given the same advice depending on who your consultant or GP is. My union have now got involved. I feel taking hydroxy alone puts us in high risk catagory, i said this to my consultant yesterday and she totally disagrees. So why am.i offered the fly vaccine every year.

[ET500]

Hi .. way back at beginning of April after blood test, I was given same advice by consultant (Aberdeenshire) and GP that as blood stable I didn’t need to shield .. I’m on HYdrox, aspirin, have asthma and high blood pressure.... I have shielded regardless but actually happy haven’t got letter as very restrictive legally . This way I can stay put but still have an occasional walk . I haven’t got the headache of employment though so can see those who have, need the letter to keep safe and not be forced into work .. Keep safe all x

[Lainy1 in reply to ET500]

Hi, Im not having the "aww you will be fine attitude"

Staff in full PPE are also getting it. Nobody knows the outcome of this virus against MPN.

[ET500 in reply to Lainy1]

Agree .. I was wondering if anyone with a MPN. Condition has contracted Covid and how they coped.. I realise everyone so different as records show, and different ages being effected and in different ways .. I am very aware of who is around me at the moment but will need at some point to get back into living with others and would like more constructive words from doctors other than “aww you will be fine” , my doctors words also.. Maybe while having 2 monthly blood tests they could check if Covid present or antibodies at the same time.. I was ill around New Years and liver took a beating so obviously a bad infection, could that have been Covid ..?

I hope you get the right response from work and you keep safe .. take care

[Jlah]

Hi. I had a shielding letter then an apology letter saying don’t need to shield. Spoke to consultant - there are levels of risk. I’m the next category down. Can go for walk/shop but must be v vigilant of the two metre distance at all times. I am putting faith in my consultant as it is a personalised response. Take care. Jx

[Lainy1 in reply to Jlah]

Hi, im confused to how it is being categorised because the NHS inform website says shield and Scottish gov says blood cancers and chemo shield 🙄

[Wyebird]

lol my GP says I’m medium risk no letter. I’ve had a letter from my hospital to say sheiks.

I actually think be careful and sensible do what ever you feel you are comfortable with regarding the safety of others.

[Lainy1 in reply to Wyebird]

Thanks, i agree, stay safe.

[Booagain]

Thanks so much for everyone's input. I am ET Jak 2 and had not received a letter so a bit anxious. Thanks to all of you I now know it's a muddle. So am not worried: am used to muddles!

Thanks once again.

[tracey13]

My husband had a telephone call at the end of march from his consultant saying he isn't high risk all his bloods are in range but to keep safe.

Friday just gone he's had a NHS text to say he has to shield. He's just had a phone call about 10 mins ago from the NHS giving him advice on shielding he said it's too late now as he's been out walking not that he's been near anyone .

[hunter5582]

Just attended a MPN and COVID Webinar put on by MPN Advocacy and Education International. My takeaway was: People with MPNs are not at higher risk of contracting COVID than anyone else, unless their immune system is compromised by the disease medication or other treatment. People who have been symptomatic (e.g. thrombosis) are at risk for an additive effect with COVID infection, so would be higher risk. People who are not symptomatic - still an unknown.

My conclusion is that it is like most things with MPNs - there is no universal correct answer regarding our risk with COVID19. It has to be evaluated on a case-by-case basis based on each person's unique MPN profile. Getting an accurate answer to the risk question depends on the provider's knowledge of MPNs in general and your case in particular. I think that is why everyone keeps getting so many different answers.

We will not really know until there is a large enough database of people with MPNs who contract COVID19 to draw some conclusions. I would rather not be a part of that particular database. Since I have an intact immune system, I am choosing to continue careful social distancing, but not completely shielding. I refrain from high risk activities, but do not completely isolate myself. My work normally requires that I travel/fly and go into behavioral healthcare facilities. Not doing that right now and am working from home and using tele-video conferencing.

Hope you get a more specific and nuanced answer to your concerns from a MPN-expert provider who knows your case. Some professions (e.g. nurse) that require direct contact with people would be intrinsically higher risk. Hopefully you can get a reasonable accomodation for whatever your situation is.

[Lainy1 in reply to hunter5582]

That's is great information, thank you. I am a staff nurse on the frontline and it has been pretty unclear who should shield. Thanks for your input 🤗

[hunter5582 in reply to Lainy1]

As a front-line nurse there is an intrinsic degree of risk of exposure. There always is for healthcare professionals who have direct contact with patients. The bottom line is going to be based on your unique MPN profile - what is your best estimate of your actual level of risk and what is your level of risk tolerance? It is going to be a judgement call without a crystal clear answer. If you are returning to work, then PPE would be really critical in addition to conscientious hygiene practices both individually and at your facility. If it was me, in the absence of a face shield, I would use safety glasses to protect your eyes as an infection vector. I have prescription shooting glasses I can wear along with a mask in situations where I have to be in closer contact with people. Assuming you would also have access to one of the better face masks since you would need that as well.

All the best. Stay well and stay safe.

[Lainy1 in reply to hunter5582]

Hi and thanks for your reply, will defo be wearing a face mask but not getting fitted for one. My friend also a nurse has been fitted for one but now they are getting training to deal with CPAP for patients.

Stay safe

[hunter5582]

I expect that any better face mask would be OK. Maybe N95, but the facemask is more to protect the patient than it is to protect you. Might help some though with mouth and nose. The bigger deal is to protect each infection vector. The eyes seem to get ignored a lot. That is why I suggested safety glasses. Don't know if you wear glasses, but regular glasses would only give partial protection. The type I wear give complete protection and are optical quality progressive lenses. Not cheap, but totally worth the money. In your setting, I would either be wearing a full face shield or the safety glasses and facemask.

You already know glove protocol better than I do. Nurses are well trained in hygiene practices that many people are having to now learn. If you are going to be working in frontline care, than your training will be more important than ever. I would document all of your concerns at your practices as well. It was nurses who taught me the mantra "If it is not documented it did not happen."

All the best to you. Stay well and stay safe.

[MaggieSylvie]

I didn't ask my GP or my haematologist. The list says people with blood cancer are at risk and people over 65 are at risk. So I registered as being vulnerable on the government website and then got texts saying to shield, and eventually, a letter signed but not dated by my GP saying to shield until 30 June.

I have MDS as well as MPN, so my haemaglobin doesn't provide enough oxygen to my body and the ET means I am susceptible to blood clots and I take aspirin. IF I were to contract coronavirus, these two things might make the coronavirus more deadly to people like me because it is known to cause clotting, and elderly people (I'm 75) with lung problems suffer badly. I don't look my age, and feel sure my GP would say I'm not at risk. My lungs are ok but we still don't know enough about how this virus works, especially in people who are already compromised. If your immune system was also not good, I would say that would be enough to shield.

Not intended as advice - just a point of view. Keep safe.

[Lainy1]

Hi, thank you for that reply.

You stay safe. 🤗

[Jenny_F in reply to Lainy1]

I think its not about if you catch it but its the reaction. I think I had it in Jan before all the fuss and was out for a month and got very close to calling for an ambulance a couple of times as I couldn’t work out why it was so hard to breathe. I would be safer than sorry and if your GP doesnt understand the condition, which many including mine dont, ask your clinic to write you a supplementary letter or demand for one. I bave been sensible but until I can have an antibody test I will work from home and not be pushed into anything. We have all done so well so why spoil all that hard work until we are really sure we are safe?