Hi just been on the second live webinar was very interesting Maz please can you thank the doctors and nurses for there time it was so kind of them there’s a lot going on to help us with MPN and lots of trials going on one thing is to keep shielding if you can same of the questions I was wondering were answered the one about the anti malaria drug do not take doesn’t seem to stop you getting the virus thanks again so informative and gives hope .
Poppy
Hi I agree the Webinar was very useful and great that the clinicians will give their time to speak. One thing I would like others view on is how far to take the shielding. I am 68 with PV and on 16 Hu tabs a week. Looking at the letter the shielding is very extreme yet on MPN voice it is unclear what risk category I am in. Obviously I am not going to take risks but feel that I can see maybe one friend in my garden at a distance or go out to walk distancing. I am sorry if this has already been talked about but I am not sure what to do.
Don’t want to be silly either but would love to know what others think
Sorry for long post. Margo
Hi Margo18 it is all strange this situation i do go out for a walk twice a week but I go at 6 30 am when it is quite I have only being do this for a few weeks only my legs started to really ache and I started to worry about blood clots and by doing that walk I do feel better in myself and we go out in the car for a ride once a week around the block but we don’t get out I am not going to meet anyone until the end of June I do really miss my family but at the moment I feel I will stick with what the government say I must admit I will be worried when I can go out and I don’t wont to feel like that hopefully by the end of June we will know more it must be much harder if you live alone we must do what makes us feel well and safe best wishes.
Poppy x
Hi Margo,
I agree with others that the second webinar was very valuable and I really appreciate our specialists giving their time to update us.
My main takeaway was from the CH presentation regarding blood clots being a major risk factor. This seems to be what pushes us into the higher risk category, so keep on with the anticoagulant drugs.
Keep safe
John
Yes they also suggested that people who have had blood clots in certain areas of the body take particular care. But they also emphasized the routine use of Heparin in hospitals
Yes so it sounded like I'm in that camp as I had a DVT in my leg that made it swell to to double it's size but also had a clot that blocked the vein my liver and needed a stent inserted. Good to hear the trials are progressing and data is building to help them make more informed decisions.
Hi Margo.
I must stress this is only my opinion and lockdown story.
I think we have to be extremely mindful of our mental health too. If that means a walk would be beneficial to you, choose a time when less people are around. A few people on the forum are doing just that. Obviously, it’s important to be very sensible and keep to the social distancing rules should you see anyone.
For anyone on their own it can be a lonely, isolating time, I don’t know your circumstances. We personally haven’t had any friends around in the garden, but, we have each other. Also, I would have to trust them 100%. Some people just don’t understand the importance of the ‘social distancing’ measures and that makes me anxious. If you trust your friend and they’re aware they can’t use your toilet etc, it would just be a matter of being extremely careful, also you would have to disinfect wherever they have touched after they have gone, in case you accidentally touch that area.
My hubby is in the Shielding category, he hadn’t been out until last week. We drove to a quiet woodland area, had a short walk and picnic, the same again this week, but, a different area which is also infrequently used. He really appreciated it, and I could see he was uplifted because of it.
I go for a walk most days, I have ET, age 64 on hydrea and aspirin, however, whether rightly or not, I have received no Shielding letter.
It will be interesting to hear other views.
Mary
Thanks all!
I really appreciate your time and effort to address our many concerns.
I’m aware, this is a new disease and impossible for you to have all the answers. However, a huge thanks for sharing the knowledge that you have acquired and clarifying its relevance to MPN patients.
Many thanks to all concerned
Mary 🤗
Unfortunately we had a vet emergency (didn't know guinea pigs could have massive nosebleeds!!!) and missed it...can it be viewed again anywhere do you know??
Many thanks Órla
I found yesterday’s webinar so informative and reassuring- it’s good to have the most up to date MPN facts and figures. Many thanks to those who organised it!
Aly
Any idea how I can see the Webinar?
Hi skipperL, you can find it on the MPN Facebook.
Thank you .Do you have to enrol onto Facebook?
No need to go near Facebook it is on mpn voice website
DJK12 - I must be stupid - Can’t find out how to do that either! Obviously lockdown has addled my brains - but thank you anyway....
If you log on to mpn voice home page, on left hand side is a link to "coronavirus advice etc." Click on that and it opens a new page. Again on left hand side, 3 down there is a link to webinar videos - April one leads it but scroll down and you will find latest one.
I too am looking forward to rediscovering my brains outside our gate when I stop shielding!
Thanks - will attempt to access it - I’m usually computer savvy - but it’s the lack of stimulation that’s getting to me!
First post and thank you
Thank you! 
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Myelofibrosis - thank you for the support 
