I just thought I would share what my consultant said in my telephone consultation today. I read out to him the third section of our advice from MPN Voice (the unclear group) and he said he totally agrees with it. He said I am NOT "extremely vulnerable" but should take the general precautions set out in government advice, being very careful as everyone should. He also advised me to keep going out for my daily walks, saying "otherwise you'll go bananas!"
Obviously his advice was specific to me but I hope this helps and reassures others in the "unclear" group.. Best wishes to you all.
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Otterfield
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Thank you so much for this! We are definitely in the "unclear" category and obviously don't know what to do for the best - my husband is a food production manager and looks after chicken so he is being called back into the office for the unforeseeable future and was worried that I was going to have to ask him to move out for a couple of weeks if we are high risk! I've told him he just needs to shower as soon as he gets home! He is also the shopper of the household at the moment as like everyone else cant book a delivery slot! Still enjoying a walk with my kids once a day and getting out in the garden for fresh air in this beautiful weather! I had to pop into hospital for blood tests today as have my phone consultation tomorrow so will let you know if they say anything different. Take care
It’s really good to hear the replies people are getting from their Consultant Haematologists.
I’d like to know who is making this patient ‘risk decision’ Is it our GP, or Haematologist, or, some higher level. I never see the Haematologist, only the CNS, but I am ET and stable.
I don't think it's GPs. Mine doesn't seem to know what I have as she has listed it on the surgery site as MDS unspecified. I have the crossover with MPN. When I spoke to her about the loud heartbeat that I am still experiencing, she asked me "Are you still anaemic?" What can you do?
My hematologist said the same thing. It is about using common sense and minimizing risks for many of us with MPNs. The only caution to this is that there is a lot about COVID 19 that is still unknown. Theoretically, having a MPN should not make you any more likely to contract the virus, unless you are immune compromised. Theoretically, having a MPN should no make you any more likely to react differently if you do contract the virus. Whether these theories are a reality remains to be seen.
I would note that many of us are over age 60 - so age may be a bigger issue. I am glad that people with MPNs are being included as potentially at higher risk since there are some unknowns. For me - I am going to social distance and be very mindful of needed precautions, but I am not going to self-isolate. I certainly support those who do want to self-isolate as we each need to decide what risks we are comfortable with. No right or wrong answer here so long as you take reasonable precautions.
I keep thinking every time my phone beeps that this is the text message telling me I'm in the high risk category. I am 64 with PV and take hydroxycarbamide and low dose aspirin. I live alone and since this all properly kicked off have had no one come into my house and neighbours have kindly offered to do shopping for me which is left on the doorstep. Because I live in the country I have access to a number of walks where I know I'm going to meet no one at all and there are no stiles or gated that I need to touch with my hands, so I can effectively exercise but still self isolate. But if the rules for the most vulnerable really do preclude any form of daily exercise I'm not sure I can keep that up for 12 weeks. Surely common sense should come into it as well.
All of the guidance I have seen indicates that being outdoors is fine so long as you maintain distance from other people. I am out on walks every day. I would go nuts being cooped up all day and doubtless out on a bunch of weight. Being too sedentary is likely more dangerous than a limited risk of exposure to COVID 19.
I have also been told that MPN does not increase the risk but taking immuno suppressants do so on hydroxycarbamide I must take care - that is I am not high risk but at more risk than someone not taking this drug so to be extra careful and minimise contact with others. I can for example go for my regular blood tests but should maintain distance from other patients and wash hands etc.
So just had my phone appointment with Consultant - said to use vunerable social distancing guidance but did say going to the supermarket once a week keeping distance should be fine and obviously washing hands when coming in etc. He said that MPNs are pretty unknown really and its more about the medication we are on so if we were to get symptoms to ring your consultant to let them know in the first instance - he said we would probably suggest coming off medication short term so for example I am on hydroxcarbamide and possibility for arranging blood tests etc - he was very honest and said we are definitely in an unknown category. He confirmed my white blood cells were okay which is really good and just to stay safe and another appointment would be arranged for 8 weeks - my platelets are 487 at the moment which is pretty normal for me and didn't want to increase medication at this time.
Hope this helps and was reassured that he said he wanted me to ring if I thought I had symptoms.
I feel a bit more confident popping out to the shop today - not been in a shop since Friday as trying to limit to once a week but needs must today home schooling 2 kids and running out of supplies! I am going to try a drive through farm on Saturday and really hoping our local drive through vegan donut shop is also open on Saturday as a nice treat to cheer us all up!
Odd question but is anyone washing food packaging? Saw something on this today online and freaked me out slightly - I obviously wash fresh stuff but the thought of washing cardboard and food covers is sending my head in a spin!
Take care everyone and lets keep catching up regularly!
On the list of conditions that make one vulnerable, it lists MPN whether on treatment or not. I have MDS/MPN but my partner is Type 1 diabetic and if he gets any kind of infection he becomes very ill. I was forced to go to the shops yesterday but I did wash my hands as soon as I came home, before unloading the car.
A doctor acquaintance has also suggested washing all the containers/cereal boxes from a grocery shop. This is because they are finding that the virus stays alive on hard surfaces for days.
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