Help!

Thanks for the welcome!

I'm new to the PV world and find it very over whelming! Before having time to mentally adjust to the idea of having a disease for which there is no cure, I'm having numerous phlebotomies and there's talk of a chemo drug. I have no symptoms and at the moment my numbers are under control but don't know what to expect. I'm 71 years old (which makes me high risk) and a caregiver for my husband who has advanced Parkinson's. I'v read info on disease and blogs; all of which are sooo scary. I welcome any advice or comments.

10 Replies

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  • Hello Ringsrud

    I really relate to you as I too have recently been diagnosed with PV with no outward symptoms just discovered the problem through routine blood tests, I am 70 and a carer for my husband and son both heart patients with extra's. I think the first thing I told myself was ' Don't Panic' OK we have been told the problem is not curable , but it is manageable, which to my way of thinking is good. It could so easily have been one of the 'others' I have been put on Hydroxycarbamide, my levels have come down and I feel fine. I don't have to see the Haemotologist for three months and so I'm happier than before. I do hope you can see beyond being scared I know if you are on your own it can be very unnerving especially not being able to sort it out with partners. But there are lots pof 'friends' on this site willing to talk. Very best wishes and keep your chin up.June.

  • Dear Ringsrud, sorry you have to become part of this new world and I well remember the panic and fear of diagnosis. Having lived with PV for 27 years I suppose I have just got used to it! Almost all of those years have involved one of two chemo drugs and initally venesections too, nowadays I take Hydroxycarbamide and tolerate it well. People are different and we tend to post more when things go wrong so when you hear about the side effects, remember not everyone gets them!

    Initailly I had several blood clots (which made me high risk) but now everything is stable and I simply get on with my very busy life. Hopefully you will be able to as well. I can understand that being a carer is an extra anxietybut well controlled PV needn't interfere with your responsibilities... maybe ensuring you get enough rest and relaxation will be important for you?

    good luck with the future.

    best wishes

    Fee

  • Your looking optimistic through PV world is first good step. Is a world where are you drinking much water (drink less alcohol) , healthy food (no meat increase uric acid) , keep moving so your body to fight only with this disease. Of course are also medicine and doctors. You can have a good chance to live in good or reasonable condition of health.

    Stay in touch with our community to know more.

    I hope to hear good news about you in future.

    Cata

  • Morning Ringsrud, Sorry you've been diagnosed with a PV, sounds like you've got enough on your plate as it is! I've got ET, and when first diagnosed read up about it and the drugs on the internet, and believed it all. Fortunately the side effects are usually few and far between, and you can get a lot of sensible answers from this forum, to questions you don't think to ask the doctor at the time! I've been on Hydroxycarbamide and aspirin for nearly 2 years now and so far so good. My counts are right down, I'm a little anaemic at the moment, but things could be a lot worse! Best Wishes X

  • Hello Ringsrud , , my friends above have me almost speechless for once as I reckon you have some excellent responses from them. . .

    I just want to say when I read circumstances such as yours as a carer for your husband with an extremely debilitating condition I feel humbled and a tad selfish in a way. . I would say as you are coping with all that you will adjust to your PV and won't allow it to undermine you. You must have a strong character to care for your man as you do. And it's a good thing you don't have symptoms as such.

    As Dumbledore said to Harry Potter ' Help is always available at Hogwarts to those that ask for it'. And it's the same on this forum. .

    Best Wishes to you both. JR - I wasn't quite speechless it seems.

  • Hi -- I'm 70, and after some years of increasing platelet count I was diagnosed with ET, and I was encouraged to take hydroxy. I didn't want to, but because of my age but because my counts were going up each year my new hematologist said I think you better so I've been on it for a month now. I felt a bit crumby the first couple of days -, and then day three I was okay. (I take it at night before going to bed) I'm on the lowest dose of hydroxy. It is scary,

    I have found this blog helpful and people so supportive, and I've also joined the MPN forum which has people from around the world on it -and I can follow what people are saying about the treatment they are receiving and types of drugs that are out there.

    I think eating well helps how you feel, and I walk each morning- I think it calms my brain!

    All good wishes. Jean

  • Thanks for your comments and suggestions. Feel fortunate to have found this forum...people who understand this disease and the impact it can have. Looking forward to future comments and tips.

  • Hi Ringsrud, sorry to hear of your diagnosis which is hard alongside what you are coping with already. You have come to the right place to get medical worries answered by Maz and Prof Harrison and tons of support, friendship, empathy from the great people on this Forum who understand what you are going through with your new diagnosis which sounds ver frightening at the beginning.

    Some of the best advice I got is when you are attending you medical appointments go armed with a list of questions, worries, etc and don't be scared to push for an answer if you are not happy. It's your body and disease so you have the right to expect the best advice, treatment from the medics.

    If you feel down, worried, overwhelmed, scared keep posting on this forum and lovely people will give you what you need. Go onto the MPD Voice website which has great and trustworthy information. Take care, every best wish Aime.x

  • Hello Ringsrud, welcome to our forum, as you can see you are in the right place for help and support from the lovely people who are part of our community. It is a very scary time when you are first diagnosed, when you are trying to find information and answers to the questions you have, but you are in the right place, anything you need to know, just ask, we will do our best to answer your questions. If you would like me to send you any of our information booklets on PV and the medication you might be prescribed then please email me at maz.cd@mpnvoice.org.uk with your full postal address. I can also send you details about our peer 'buddy' support programme if you feel you would like to talk to someone who has PV. Kind regards, Maz

  • Thanks for your suggestions! Starting to get my mind wrapped around this...seeing that PV is manageable.

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