Hi good peops , for info just this minute had a text message from the above to say I'm identified as someone at risk of severe illness if I catch the big C virus. Advises to remain home for minimum 12 weeks , I can open a window but not to leave home. And to stay 3 steps away from others indoors ( I guess they're working on assumption they'll be going out ?, really unclear) . And to wash hands more often.
More messages with info will follow . Dunno if standard but says "To opt out reply STOP" honestly ?
Nothing new as such except to confirm I'm in the high risk group. Will see if anything follows in next few days.
Take care All - Chris
PS my dentist rang to say they've now been told to cancel all non urgent appts and if my issue becomes too,painful and I need treatment it will be at my risk and somewhere other than my local surgery. No more info available.
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Thanks for the update jediRect. If you don't mind me asking were you told the isolation is because you have an mpn or because of your medication? I have ET and only taking aspirin?
It doesn't seem clear about other people living with you? I mentioned in another post my husband works so has to go out daily and we have to share facilities within the home.
Hello. My reason is I had a Stem Cell Transplant for Myelofibrosis in 2015. Unfortunately I had a severe reaction to it and as a result i am still weakened by it and on a low dose of immuno-suppressant. So a bit of both in my case.
It isn't yet clear about those living with you. But the advicentre seems to be if you're self isolating and your partner come carer needs to go out then you should keep your distance in the house. How this works in reality I don't know. You can only try and be as careful as possible and sleep apart, don't use the same towels etc. Far from ideal which is why my wife / carer has decided not to go out.
You have been in my thoughts today,just put pad on and saw your post.
I hope you can cope with your Lock down,that's hard just to open a window but not to go out,We are in total Lock down ,hubby and I must not go out as we both are ancient ,he has lung probs and me M P N as you know.But we have our own land surrounding us ,so can go out to horses and with dogs ....
Keep safe Chris,you and your family...all my very best wishes ,e hugs and lots of thoughts going out to you .Sally xxxxx
I think I read somewhere on here that having an MPN does put you at the high risk end of the spectrum. They are advising that if you have not heard anything by Sunday, 29th then you should phone your GP.
I spoke to my GP on Friday and she asked me if I "was still anaemic". I have MDS as well as MPN, so she isn't going to understand why I would call her about this. It's good to know there is some sort of deadline, though. Thank you for this.
Hi just reading your comments, I have ET I am taking clopidogrel and Hydroxycarbamide.. I am unsure if I will receive tx/letter.. I was told by last week to isolate for 12 weeks by oncology.
Hi I am the same as you. Had no recent oncology contact and so far no letter, not sure where this leaves us, will have to find out. I think I will contact surgery later this week, have a blood test due and will ask them if I am ok not to isolate for 12 weeks, I still feel very unsure when I go out shopping for food though. Take care all.
No. I thought it was a bit daft unless you live in a flat or have a communal garden. The expert next to Boris on last night's bulletin said the virus doesn't fare so well outside because of the temperature and UV light so as long as you keep a sensible distance away from others it's ok to go for a walk . Because it's important to balance physical health with mental health for those who don't respond well being cooped up.
Exactly, it seems a bit harsh that you can’t go in your own garden. Presumably, they’re being cautious about close contact with neighbours, only thing I can think of.
Check in and have a chat from time to time with us. X
Thanks for up update Chris. I wasn't sure if they were doing letters or texts or both. Surely u can take a turn in ur own garden..alone... well I've had the dentist email..awaiting the text. Take care n stay safe. X
Hello Chris, good to hear from you. Was thinking of you only the other day and wondering how you were coping with this nasty virus cannot believe it has been five years since your stem cell transplant where have those years gone, still remember those brilliant pictures you put up on here as you went through your treatment as gruelling as it was, you had such courage then and you will now I am sure.
Hi CHRIS, thanks for posting & letting us know. It seems like your government is taking this seriously which is great. I’m in the US & our president is thinking about ending recommendations that we limit contact. He’s being urged by some politicians in his political party to reopen restaurants etc and encourage people to go back to their usual lifestyles. Some governors have imposed strict rules but I’m not sure those can continue if the US government forbids that. It scares me to death. I know how much you’ll miss your grandkids & others. We have an app for our phones and iPads that let us have video calls with many people from different locations at the same time. Let me know if you’d like that info. Also, major museums in the world have free online tours; there are US zoos & nature preserves in Africa (I believe) with live cams for folks to watch & free concerts online. You might enjoy some of these. And you can always write a general post asking folks to let you know what’s happening in their lives if you’re super board. Good luck, be well. Xoxo Katie
Hi Katie, ,yes worrying times indeed , I find it hard to believe how rapidly this virus has got round the globe. I don't think DT should be pressurised into acting too soon. One of my concerns is once the lock downs are lifted and everything is back up and running , sporting events ,bars, restaurants, schools etc everyone will swamp them and the thing will re-emerge. . .Hope not !
It's hard not seeing the kids for sure. And they're missing Grandma's leniency and wee treats. I will check out those virtual tours thanks though I don't spend hours on line.
Always great to hear from you my friend. . You take good care. Chris x
Hi Chris lovely to hear from you though wish it was in better times. I can’t believe it’s 5 years since your transplant, that’s flown by. We all miss your cheery posts. Hope you and your family stay well, Karen xx
Hello Karen, , well not quite 5 years but will be having a big bash in September if all this terrible business is done with . . I must admit some of what i went through is a bit woolly with the passage of time. . But I have a few little things sticking around to remind me.
Always lovely to hear from you . Best wishes to you and your family throughout this difficult time xx
I do hope it’s all over before then so that you can have a real knees up! Lots of things are very ‘woolly’ with me these days too.
It’s a terrible time. We are struggling to deal with Alan’s mum who is 93 with early stages of dementia and lives on her own. We will get through it hopefully.
Oh dear. I feel for you as I've had a little experience with that many years ago with my ex wife's Grandmother. . . btw lovely pic of you and kids from what I can see of it as my mince pies never fully recovered esp my left eye cornea which is scarred. . But my overall vision gets me by. , , thank goodness for Manchester Royal Eye Hospital. .
Hi Chris. Hope you’re well. I have a dog who needs walking. Seems to me it would be safer for me to break the isolation and walk him in a remote place then getting a dog walker which involves washing down leads and his fur every time. So difficult knowing what to do for the best. Take care. Jacquie x
Hi Cassie , I had a BMT 4 years back but had a severe reaction which left me vulnerable, still need a low dose immuno-suppressant and seminars to catch bugs very easily which turn nasty very quickly. From what ive seen reported If I got Covid I would need ventilating and oxygen as I'd be in the critical group.
Hi Wyebird, , this isn't clear but I know of a couple of folk with severe COPD that have had a Txt also. With the numbers on this Forum it would follow that if MPNS are included some more folk would have posted they'd had one . . . I don't know how the folk are identified so maybe there's different paths to get there.
It's all unclear which doesn't help anyone esp those in certain health categories. .
However it is I would everyone regardless of their condition needs to take the utmost care and follow Govt and NHS advice. . Stay safe
You're right Tracey its something I never thought I'd experience in my lifetime , the pity is how / where it all started as it should never have left that region or country to spread itself and might not have done so if twer a European one or the UK.
Our tension lifted a bit when my wife decided to stop home also, but we're only in week 1 and running out of some basics. So I understand the pressure esp if you have kids to feed.
Being on Ruxolitinib I would expect your hubby to get the official communication but if you've decided to stay home it adds little. .
I wish you and your family all the best over the coming months and by July August we can all breathe a huge sigh of relief , though many won't be that lucky.
Yes most of the populous have had one to reinforce the new 'rules' announced by our illustrious leader yesterday about staying put , no groups of more than 2, 1 exercise outing a say etc. . As far as I know there's nothing in place yet nationally by way of help with essentials. . ,
Hi all, just to let you know that I received a letter from the NHS this morning, titled “IMPORTANT ADVICE TO KEEP YOU SAFE FROM CORONAVIRUS”. I’m JAK2 + with massive abdominal thrombosis and have been repeatedly hospitalised with internal bleeding over the last 3-4 months.
What a mess. You would have really thought that we d all have been locked down weeks ago wouldn’t t you? Personally if I d been PM I would have stopped all flights to this country as soon as Italy started having problems.
Our local hospital in Barrow put an elderly man with pneumonia in a general ward for 4 days allowing fam and friends to visit. Finally after 4 days tested him for C 19 which of course was positive. Beggars belief.
Stay inside or in garden as I’m doing! All will be well.
We need more food deliveries up here that’s for sure.
Hi Louise, , thanks for your message. I totally agree , , the warnings were there weeks ago and we all but ignored them so now a mad rush to get it all in place and police powers to stop folk congregating etc.
There are some harrowing vids on social media of poor devils struggling to get breath. , if I've seen them surely these folk that rammed the parks , beaches etc have. ,
I've been pottering in the garden , we have a Japanese and Virginia creeper which I've neglected for obvious reasons and they've gone ballistic going the full 50 feet length of my fencing and over onto next doors garage, house derelict so no issue there.
Thanks for the info Chris havent heard anything as yet.. waiting as my work place requires proof of this..I have essential thrombocytopenia and taking hydrocarbomide
Yes you're in a difficult position , it's disappointing because I would expect your employer to be a little more savvy and recognise your situation. . My sisters employer recognised that she may be a risk to me (as shes doing some shopping but we dont have close contact) so told her to work from home.
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Uncertainty over MPNs re Coronavirus
My reply from NHS England. 
Ruxolitinib or Interferon
SSRIs and anticoagulant medication
