Nursing with ET during concerning times. - MPN Voice

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Nursing with ET during concerning times.

Nickyanne profile image
36 Replies

This issue is something I would like Maz to ask the medical team ( if this is possible!) about but also others in a similar position. I am a 40 year old full time nurse, I have ET diagnosed when I was 25 & I take hydoxyurea since diagnosis and I am more than a little concerned about Coronavirus. At the moment I am doing an intensive 1 yr degree to be a health visitor- it involves lots of face to face contacts with mum/dads/babies & children who ultimately are well people. I am also based 50% of the time on a university campus. I am trying to remain positive about things until I’m now hearing community nursing staff maybe re deployed to hospitals if the situation deteriorates. I have A&E nursed throughout the SARS outbreak when I had ET on treatment & was ok. But then 2 years ago my son had influenza B ( he was ok) but passed it onto me & I ended up really poorly in hospital for a week with pneumonia, possible meningitis & took weeks to recover, this was after I had the flu vaccine. To make me worry even more my 13 year old has recently been diagnosed with insulin dependent diabetes & I can do without her getting poorly. On the positives my hand washing technique is fairly good & I do have a tiny pot of nhs hand sanitiser🙌.

What do I do/say if I’m called to front line nursing/ is this any worse than the SARS situation/should I be worried out in the community health visiting? Are there any other MPN NHS /worldwide medical staff particularly nurses out there & what are you finding/ how are you coping. Obviously my NHS occupation health dept no about my ET but I haven’t told my university / lecturers.

ET wise I’m taking 1.5g HU daily, platelets were 450ish when I was seen 3 weeks ago & my other blood results were normal.

Sorry this post is so long- thanks for bearing with it!!

Kind regards Nicky x

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Nickyanne profile image
Nickyanne
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36 Replies
Mazcd profile image
MazcdPartnerMPNVoice

Hi Nicky, yes of course I will ask. Maz

Nickyanne profile image
Nickyanne in reply toMazcd

Thank you Maz x

JediReject profile image
JediReject

Hi Nicky , ,I would say that as you fall into the more at risk group given your ET, the fact you're taking HU, your past history regarding Influenza B ( which I had twice in 2016 and was very poorly). And your daughters unfortunate diabetes I would doubt very much if you are put on the front line if the worst happens. .

It would be irresponsible of an employer to put someone with an underlying blood cancer condition in that position. .

If you are asked you must remind them of your condition but I fully understand your concern. I'm sure you're doing a great job where you are and you do well to hold that down I reckon.

Good Luck , Regards - Chris

Nickyanne profile image
Nickyanne in reply toJediReject

Hi Chris, thank you so much for your reply & understanding. I absolutely hate making a thing out of my ET & have felt so ‘robbed’ & struggled at times I really just want to forget I have it, keep positive, keep working & pushing on through but this current situation is fairly concerning.

Like you say though if push comes to shove I will need to put myself & family above patients & colleagues & I will feel so guilty about it all.

Nicky x

Hi Nickyanne, I am a nurse as well. I work in a public hospital. I am working a surgical ward where it is unlikely that any patients who have been diagnosed with the virus would go. We only have 5 cases here in NZ so here's hoping it will stay like this. I will not nurse these patients even if asked because of having ET.

Nickyanne profile image
Nickyanne in reply to

Hi there, thanks for your reply. I really hope the situation remains that way in NZ for you. Here in the UK the Royal college of nursing has said to prepare to be re deployed to work in other areas due to massively increasing workloads that are to be expected. I’m just worried that if I get told to work in a&e I will be right in the thick of it & it’s an exhausting place to work in the best of times.

Nicky x

Mazcd profile image
MazcdPartnerMPNVoice

Hi Nicky

Advice from Prof Harrison is:

at the present time NHS is saying no increase in risk to staff she should discuss with her line manager.

HU does probably not increase risk.

Maz

Nickyanne profile image
Nickyanne

Wow that was quick, thanks Maz. I will wait to see how this all evolves & might re enquire if/when the situation changes and I have more specific information of what’s expected of me x

Mazcd profile image
MazcdPartnerMPNVoice in reply toNickyanne

you are welcome and of course with the situation changing daily that's all you and everyone else can do, keep checking the information released by NHS and public health. Best wishes, Maz

Swede profile image
Swede

Hi, I work in a dental surgery and I have talked to my doctor about it. She says that today the guidelines does not indicate that any MPD is suggested to be of any increased danger of getting the Covid19. This might change but for now there is no higher risk according to NHS.

Nickyanne profile image
Nickyanne in reply toSwede

Thank you for your reply x

beetle profile image
beetle in reply toNickyanne

I’m afraid I would have to challenge that. I accept that having an MPN does not increase our risk of contacting Covid 19 but those of us whose immune system is compromised by the disease and/or medication (such as Ruxolitinib) may be left with little to fight the disease if we catch it. I assume that if your blood results are within normal range there should be no reason to worry unduly but there are many of us who do not fall into that category and therefore have more cause for taking preventative measures

Trocken profile image
Trocken

I’m much like yourself, but a 39 yr old paediatric OT working full time in the NHS with our most complex kids. Our trust has asked all managers to complete a scoping excercise about our family situations and our own health, to help plot where service pressures will be, it’s asked:

- do you have elderly parents you care for?

- do you have dependent children you would need to care for?

- do you have a long term condition?

- do you care for someone with a long term condition?

- are you immune-suppressed?

- do you care for someone who is immune-suppressed?

-would you be happy to work additional shifts if required?

I know of friends in other trusts who have been asked the same questions. I find this kind of planning reassuring and having spoken to my line manager the plan for me is to become office based or work from home depending on how things pan out. The NHS are amazing when it comes to planning in these situations, I keep reminding myself how well SARS was managed. We were appropriately assigned a new role then! :-)

Keep talking to your line manager and don’t be afraid to self isolate, you need to be able to take care of not only yourself but also your daughter as she’s probably more at risk than you. Take care xx

Nickyanne profile image
Nickyanne in reply toTrocken

Hiya, thank you for this, that questionnaire sounds really sensible & reassuring , I’m going to ask my line manager if any thing like this will be done.

I do keep trying to reassure my self that SARS was handled well & I was fine & remained in my a&e role - I don’t remember this amount of panic & worry then and maybe it’s the way the press are reporting it that I find so unsettling. your right about my daughter - the last thing I want for her is to get poorly she’s already coped with so much.

Good luck & take care

N x

Wyebird profile image
Wyebird

You are in a real dilemma. I totally understand why you have posted. I truly hope you get sound advise.

Wishing you and your family good health during these troubled times.

Nickyanne profile image
Nickyanne in reply toWyebird

Thank you 😊

Lainy1 profile image
Lainy1

Hi nickyanne, I too am a NHS nurse, we are being redeployed as of Monday to other areas within our hospital 😷

I also have ET and take hydroxy 1gram.mon to Friday and 1.5 at weekends... my consultant keeps a close eye on my neutrophils, which are stable at the moment altho I am still worried 😷🤧

Stay safe and keep singing happy birthday 🤲

Nickyanne profile image
Nickyanne in reply toLainy1

Hi Lainy, gosh do you no where you will be expected to work as of Monday? What department are you normally in?

Yes my WBCs were all good last time & I actually think they’ve always been fine. Stupidly I presumed I had a fairly robust immune system until I caught flu off my son that completely wiped me out.

Thank you so much for taking the time to reply, good luck 😷N x

Jackgirl10 profile image
Jackgirl10

Hi nicky I am in a similar situation. I am a practicing health visitor with Polycythaemia and also take hydrox. I have had a few incidences of illness due to low immunity eg flu despite having the vaccine and shingles. We have already been asked to volunteer for swabbing and managment want to know our work backgrounds for redeployment. I've been quite clear when replying to their email that I have a MPN. I wouldnt be too worried about putting yourself at risk as steps are already in place to protect everyone. We have been asked to phone prior to home visiting and given questions to ask about any illness in the household. The GP surgery I am based has also closed its doors and triaging. I'm sure they wouldnt knowingly put you in an at risk situation even though they know very little about MPNs. Enjoy the rest of your training and your career as a SCPHN.

Nickyanne profile image
Nickyanne in reply toJackgirl10

Hi there, thanks for replying, good to hear from you, I guess we will all have to wait & see what happens. As yet my work haven’t asked for our backgrounds etc & we weren’t calling before visiting last week but this may change when I go back to practice. Just my luck I will be stuck as a student HV for much longer prolonging the agony of the SCPHN course due to this virus!!

Take care Nx

Nickyanne profile image
Nickyanne in reply toJackgirl10

Hi there! I’m just wondering if you are still working or if you have been told any new information regarding your MPN & meds & if we should still be working in the current situation. I’ve been told to bring forward our study weeks to do academic assignments then be back out. Phoned OH dept & they said the ET/hydroxyurea doesn’t make me more vulnerable & will be ok to be redeployed.

Nx

ladydriva profile image
ladydriva in reply toNickyanne

hello, i am a neonatal nurse, ET only on aspirin.

Been told by my GP and specialist nurse at The Christie to self isolate for 12 weeks.

I am devastated as want to work and do the job i am trained to do.

But then what if we get very sick , we are then a drain on the nhs.

Feel like we can’t win right now.

Take care

Tara x

Nickyanne profile image
Nickyanne in reply toladydriva

Morning, it’s so confusing all these mixed messages.....when I spoke to OH dept & explained about ET/meds she was so quick to say it would be fine I’m actually wondering if she knows what it is & what she’s talking about. For the time being I am in isolation really with my 2 kids attempting to write 3 assignments- leadership, therapeutic communication & a longitudinal study😱😭. The trust have said back to placement areas end April. If I get called back sooner I will call OH / haematologist.

Thanks for your reply, you can only do what u have been told to do, it’s hard not to feel like your letting colleagues/ patients down , that’s what makes you a good nurse.

Take care, stay safe & healthy.

Nx

ladydriva profile image
ladydriva in reply toNickyanne

Thank you

Have you spoke to

your specialist nurse? or your consultant? or GP?

I have found these last 2 weeks OH and HR don’t understand our condition, and they are very confused about the guidance.

I was told my matron was happy for me to work!

Confusing info also from MPN voice /Blood wise/ consultants.

No ones fault, the virus is unknown how it will affect us.

It has taken me a lot of soul searching to go with my specialist nurses info to isolate for 12 weeks.. like i say i feel like

i am letting down ny profession, it also means i don’t get to see my 5year old grandson, who i saw most days.. so not a decision i took lightly.

Mainly as i don’t want to be someone taking up a ventilator that could be used for someone who wasn’t able to have the choice to self isolate.

Stay safe and hope you get them assignments finished 🙈

Jackgirl10 profile image
Jackgirl10 in reply toNickyanne

I'm afraid there has been so much conflicting advice nicky. However I have been reading the information and advice on bloodwise. They say that the effect of covid 19 on mpns is unknown and that they advise the 12 week shielding. The bloodwise sites very useful. I am currently working from home and just going to my office to pick up work so I am having no face to face contact with anyone other than immediate family who reside with me.

Hope this helps

Heidi-W profile image
Heidi-W

Hi Nicky,

Good luck with it all. I'm a GP and hospice doctor with PV on rux but currently self isolating as my 9 year daughter likely has the virus although as she's coping ok at home we don't fit the criteria for being swabbed. There was no way I was going to risk going in and doing baby checks etc and seeing vulnerable patients yesterday. Our practice was already on a telephone consulting system so I'm hoping to help out from home with phone calls and blood results and docman letters and other admin etc over the coming days. I think it won't be long before they have to shut the schools and step up social isolation so getting ready for a long stint being at home. I'm waiting to see how the symptoms develop with me-already feeling a bit more breathless but no major fever or cough yet but will try and post again with my experience if the symptoms do ramp up.

Hopefully your department are sensible and will try and protect you. I'm lucky in being able to help out from home and have huge respect for the front line teams in hospital in particular a+e and the ICU teams who are getting to be hit the most. Good luck everyone who works in the NHS .

Heidi

Nickyanne profile image
Nickyanne

Hi Heidi, thank you for replying, I really hope you are ok & I hope your daughter recovers quickly.

I hadn’t really thought about it but I guess we could do the NBV& 6/52 reviews over the phone.

I agree with you about the schools closing & social isolation. My kids are old enough to stay home alone but not if my diabetic daughter gets poorly obviously. I know, poor a&e/ITU staff, I really feel for them, my friends who are in a&e say it’s been awful with people turning up with symptoms & not following the guidance to stay away. Really good to hear from you,

Take care & keep us updated on how you are. Thinking of you & sending you & your daughter get well soon wishes. Nx

Heidi-W profile image
Heidi-W in reply toNickyanne

Thanks Nicky, since I replied and checked my emails I had email from practice saying good news the guidance has changed and they are expecting me in on monday as they say I don't have to self isolate despite being main carer for my daughter ! no asking re how my daughter is or how I am despite me informing them of my health issues- so sad! I now have a fever and starting with the cough so I shall politely be declining that offer of me going in on Monday but will offer to work from home to help them if I can. I hope your get good support from your team. We really all need to look out for each other and use commonsense to support other options of working safely. Good luck x

Heidi-W profile image
Heidi-W in reply toHeidi-W

PS really hope you and your diabetic daughter keep well

Nickyanne profile image
Nickyanne in reply toHeidi-W

Unbelievable re your practice. Such lack of compassion it’s scary. You don’t work for the CCG round here do you?! They’re ruthless!

I hope you are ok & your daughter too.

You sound like a lovely GP x

Heidi-W profile image
Heidi-W in reply toNickyanne

Ah thanks Nicky. I'm in East Cheshire. They've been fine about me not going in today and one of the partners has texted to drop off supplies if needed too so that cheered me. Shame their original e-mail was so businessy/non personal. I've checked on our system today and looks like people are really trying to keep away from GP land. Not sure how long that will last as things escalate. I know of 1 GP practice having to shut as all 7 GPs positive but not sure which part of the UK that is. You and yours keep well x

Nickyanne profile image
Nickyanne in reply toHeidi-W

Hi Heidi, thanks for your reply, how have you been? Are you feeling any better? How’s your daughter?

Oh not my local CCG- who are quite corporate & business like in most approaches. Glad they’re being a bit kinder now though.

Update from me - my uni closed yesterday so all face to face assessments won’t be done (we had presentations/exams) but they’re looking into doing things differently so we’re not disadvantaged as such. But I’m fairly certain I won’t qualify end of July now so will have to go back in September to finish off anything outstanding. It is what it is so.....

Work have cancelled all non essential visits, and telephone contact for everything else. No meetings/training.

Very strange times out there.

Kept well & safe

Nx

Vtr1000 profile image
Vtr1000

Hi Heidi-w, I would also be interested in how your daughter copes. I have type 1 diabetes and ET Jak2. Wishing your daughter well.

Heidi-W profile image
Heidi-W in reply toVtr1000

Thanks for your concern. Shes had fever on and off now for 4 days and the cough. As unable to get swabbed now with the rule changes we don't know definitely she has it but have to treat it that she has. She's fine pottering around the house but is tired if she goes for a walk and gets bit breathless then. I'm starting with a bit of a temperature so will keep you updated as things evolve..

I suppose with your diabetes you may see your BMs creeping up which may be an early indicator of symptoms but obviously can increase with other infections too. I hope you keep well. Good luck

Vtr1000 profile image
Vtr1000 in reply toHeidi-W

Hi Heidi-W, Thank you, I appreciate you taking the time to respond.

encoupejas profile image
encoupejas

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