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My diagnosis - jak 2 positive polycythemia

Good morning all, I found your page and registered a few weeks ago but it has taken a while to write my story. I have been reading lots of your posts which have been really helpful. I was diagnosed last may which was in fact a few days before my lockdown 50th birthday through a routine blood test, I had the blood test in the morning and by 2 in the afternoon I had a call from the hospital telling me I had a chronic blood disease which I had never heard of, I was in total shock, I was told that I had been booked to have a venesection on the Monday, this being a Thursday as my red blood count was extremely high. Before I could get my head straight. They called back and said we dont want to wait that long you need to come tomorrow. I was beside myself with fear, I was working home alone and in such shock. I went on to have 5 venesections before my rbc was back in the normal range. It was then a few months in between my next 3 venesections, great I thought this isn’t so bad, but gradually my white blood count and platelets have increased and are extremely high, 18.3 and 1038, apparently i now also have leukocytosis and thrombocytosis. I have a consultant appointment on Monday where I believe I will be advised to go on hydroxycarbamide, this has now become real and has really scared me. I think I will also be having a bone marrow biopsy. I have had some really down days when I feel totally drained of energy and am fit for nothing, I now feel out of control with what’s going on in my own body. I continue to work full time from home mainly but go in the office 2 days a week, I have never been advised from my gp or consultant not too, so presume I am no higher risk of covid than anyone else. Sorry to have gone on a bit but it’s hard for friends and family to understand.

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Welcome @Colbert1970 to this forum. It’s so good that you’ve found us at this extremely difficult time for you. Thank you for having the courage to share your story. I hope it helps. Polycythaemia is classed as an MPN - a myeloproliferative neoplasm. It is rather a mouthful but basically means that your bone marrow is overactive. I have a different MPN called myelofibrosis which I have had for 28 years. I recommend that you also look on the MPN Voice website as there is lots of useful information there. I am not medically trained, but just a fellow patient, but I think you will find that all MPN patients have been advised to shield and are considered clinically extremely vulnerable to Covid. I don’t want to alarm you, but if you have been assigned a clinical nurse specialist I suggest you speak to them about this. You should be made a priority for the vaccine. MPN’s are rare and often GP’s don’t come across them very often. Please feel free to contact the Blood Cancer UK support line on 0808 208 0888 and let us know how you get on. Warm wishes. Willow

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Hi @Colbert1970 a great big welcome and I am so glad that you have found us and had the courage to post.
You must have been in tremendous shock being diagnosed through routine blood tests, a few days before your lockdown 50th and then not having time to think and process your shock before entering in to the parallel universe of medical appointments, tests and this new language.
My emotions have been all over the place and that is just during lockdown. You talk about having really down days, feeling really drained of energy and fit for nothing, perhaps that is what we call fatigue. Blood Cancer UK has a really good factsheet that you can download from their website. Since diagnosis I do not deal with what personally stresses me well and that can bring on my fatigue. My fatigue can come on when I overdo it emotionally, physically or practically. It can come on immediately or up to 48hrs after I have overdone it.
To cut down my stress I always write my fears, questions, practicalities, medical history, medications etc, so I feel more organised before appointments and I ask for clarification if I do not understand something.
I couldn’t explain to family, friends and work what I could not get my head round myself. Sometimes we understand as perhaps family and friends just cannot. We are here to support you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
It might be worth checking out with one of your medical team about whether you should be shielding and entitled to the vaccine now.
Please let us know how you get on with the consultant on Monday and take lots of care of yourself and stay safe.

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Hi @Colbert1970 and welcome to the group. I can see that @Willow and @Erica have given you some great advice already. I think feeling out of control is the worst feeling. Write down all off your questions ready for your appointment and use the support line if you need some help doing that. Be kind to yourself. It’s a huge thing to deal with and it’s all happened so quickly hasn’t it. I’m so glad you’ve found the forum. We are all here for you X

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Thank you so much for your replies, it really is wonderful to read all the posts and know that there is so much support here. I am really surprised to her about shielding as I asked my consultant back in May last year if I was more vulnerable to covid and his reply was I dont know as it’s all very new. I have never been advised to shield and was told by my GP last week I would only get my vaccine early if they was advise by the consultant that I would be starting a treatment! I guess I will just wait to be contacted.

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Hi @Colbert1970, perhaps it is certainly something to take up with your consultant or medical team, I have learnt that I have to be proactive and assertive over the years.
The main thing is your safety, let us know how you get on.

Hi @Colbert1970. I agree with @Erica. Let us know how you get on

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