Extremely vulnerable: I wasdiagnosed with ET and... - MPN Voice

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Extremely vulnerable

8 Replies

I wasdiagnosed with ET and JAK mutation about 3 months ago and take hydroxycarbamide and clopidogrel. My platelets were in the 900 s then 6 weeks later in the 800 s now 6 weeks later down to 600 so I was feeling pleased with myself. Then I received a phone call off my doctor who said she is putting me on the government list as extremely vulnerable and will get shopping delivered( which I told her I don't need as husband does it) and get prescriptions delivered which again my husband collects. She asked if I was making sure I was completely isolating as extremely vulnerable. I came off the phone feeling really frightened because my haematologist has never made me feel that way. I feel I was making progress but now feel I have gone backwards.

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8 Replies
Mostew profile image
Mostew

Be pleased still .

They routinely say that you are extremely vulnerable. It’s horrible.

You really don’t need to stay in any more than government recommends for everyone unless you feel you should .

I have been getting letters from Matt H

For months . I’m feeling ok going shopping , (only one supermarket happy with ).

I hate the way we are being bombarded with fearful messages . X

in reply toMostew

Thankyou Mostew for your reassurance..it is nice to know we can still live a life!! x

Mostew profile image
Mostew in reply to

Trust yourself. When you don't have a chat on here!!!!

Otterfield profile image
Otterfield

I think it depends on what kind of area we live in. I am in a part of the country where incidence is low. I only go out for walks and to the hospital but I am comfortable with my husband going shopping. If I lived in a very busy urban area I would be much more cautious and probably get shopping delivered.

Vtr1000 profile image
Vtr1000

Hi Rockstone, a bit of a worrying phone call. I also have ET Jak2+ and at the beginning of the pandemic I was also taking hydroxycarbamide (stopped taking beginning of Dec). I am not classed as extremely vulnerable, when I queried this with the haemo as others on here were getting the shielding letters I was told that my neutrophils were not at a low level. I have worked with others throughout. Just told to take the safety measures as everybody else.

Mazcd profile image
MazcdPartnerMPNVoice

hello Rockstone, I am sorry that you felt frightened by what your doctor told you, I would advise that you read the guidance issued by the government for people who are classed as extremely clinically vulnerable, under the section 'socialising' you will see that it doesn't say that you have to completely isolate: gov.uk/government/publicati...

best wishes, Maz

Jennytheb profile image
Jennytheb

Hi, I have been on same meds with same conditions for 6 years. For about the first few months I was literally very concerned about myself, it is horrible isn't it. Now I lead a totally normal life and am grateful for that. I agree with Mostew about getting out and about, it keeps me sane walking dog and that sort of thing, and shopping, within reason and looking out for not too many people etc. I get letters from Matt H etc, think they have to cover themselves. For my own sanity I listen/question my Hematologist if I have any problems. This condition has only recently been classified as a variant of blood cancer and so they have to include us in these categories too I feel. Having said that it doesn't do any harm to remember to take care of ourselves and I try to avoid getting into any situation where it might be too crowded etc. Take care.

MaggieSylvie profile image
MaggieSylvie

Why not get shopping delivered? Your husband could bring Covid back from the shops. If you're shielding, it is better for both to shield if possible, or at least it could decrease the amount of "in shop" shopping that has to be done.

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