hi I'm totally new to this forum

Hello All

On the 6th February thus year I was diagnosed with PV, I was devastated. You never know just what's round the corner. After being admitted to hospital as an emergency case with blood clots that would not clear, resulting in life saving surgery, and a 7 week stay in hospital. I've been put on Intron A. (Interferon) My consultant says the side effects will wear off eventually, but some mornings the bone pain is terrible. My consultant recommended the MPD Voice site, I have found more answers to questions than I ever could have imagined. I've never really been on this type on social network type thing before. Finding out I was entitled to An Exemption Card for prescriptions was a welcomed saving, no medical professional ever mentioned this. Also learning that I may be able to claim on our critical illness policy was worth looking into. I've been looking to see if I would be entitled to some kind of benefit as I feel I am unable to work. Have worked all my life since the age of 16 aged (50 now) it would be nice to learn if there is something that is available for me now that I cannot work because of this condition. If anyone knows of anything it would be lovely to hear from you 😊

30 Replies

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  • I am very sorry for your recent diagnosis. I feel your pain as I am also recently diagnosed. I am 58 years old with ET. Life changes overnight and it seems like everything is different. But as time goes on and you are able to absorb this you will feel better and fight to have normalcy back in your life. I am not sure how your benefits work as I am in the US. I have had to cut my workload to less than half, long before I even knew what I had. I just ran out of steam and so exhausted. Now I have learned to adapt and the people around me are finally realizing my limitations. Take care of yourself.

    I send you blessings and well wishes. Janet

  • Thanks Janet for your lovely reply, as this is all still so fresh the things that hurt the most are the things that effect my family, one of which we had to cancel was taking my son to New York, I was devastated telling him, we had only been planning the week before of where we were going to visit on this trip of a lifetime for him. He was lovely and came and hugged me and said not to worry we can go when things get better. so that is my goal to look towards at the moment, getting my son to New York 😊 hopefully I'll manage that, thanks once again for your lovely reply, Sue x

  • Hi, you will get lots if information on this site. Everyone is very supportive if you want it. I was diagnosed at 51 with PV, I'm now 60 and life is quite normal for me apart from popping a few pills. Many people have claimed on their critical ilness policies, I'm sure they will be able to give you some advice. The medical profession seem to forget about free prescriptions, I only found out from this site. I can only advise you to sit back, calm down and read everything you can regarding your PV. Difficult I know when you have been through such an horrendous time, but believe me, there is light at the end of the tunnel and you WILL get there!

    Good luck with you recovery. Xx

  • Hello, thank you for your reply, it great to know there is a place you can find out information, a place that can answer questions, advice as there are people that have gone before you and done it,

    Thanks again, Sue x

  • Hi, I am new to this site. I also have PV since 2008. What is "critical illness coverage"? This is sbasa.

  • Hi Sbasa,

    Critical Illness cover is an insurance policy that can be taken out that covers for a specific range if critical illnesses as stipulated by the insurance company. If you are then diagnosed with a critical illness ie cancer, you can then make a claim on the policy.

    Regards

    Judy

  • Hello, at the moment you are shocked and upset, and understandably so but don't write yourself off just yet. As the weeks go by and things settle down you may find yourself feeling differently.

    I was diagnosed in 1988 with PV and initially had several blood clots both arterial and venous. Now at 56, I work more than full time (its one of those jobs...!) and mostly forget I even have PV apart from the pills and some tiredness.

    Get all the physical and emotional support you need and ask questions. Remember that we all react slightly differently, even with the same condition. some have side effects from their medication and others don't.

    Good luck

    Fee

  • Hello, thank you for your response to my first pits, I was amazed how many people replied, it's great to know people with the same condition are out there with information that helps

    Thanks once again, Sue x

  • Hi, my husband was diagnosed nearly 3 years ago with PV aged 47. Unlike you he wants to know nothing about his condition and will not read any of the info. I found this site and it has been a great help to me. He has always been on Hydroxy and aspirin and has suffered relatively few side effects apart from tiredness and sweating. He has been on the same dose for over a year now so think he is quite stable. He does hate taking the pills as it's a constant reminder but as I keep telling him they are a small price to pay. We claimed on critical illness cover, and with a very supportive letter from consultant we were paid out quite quickly.

    Hope my rambling a help

  • Hello, thank you for your reply, I think it's a woman thing, wanting to know all information possible, in the hope we can improve things, I'm with him on hating taking pills though, I'm still on 24 a day due to recovery from emergency surgery and I've cut those down gradually from 38 a day, good to hear your critical illness paid out, I was so nervous filling in the forms, even asking for them over the phone, as the insurance company Legal and General seemed to reply as if they have never heard of the condition, which then made me feel like I was asking for something I shouldn't !! Hopefully ours will be successful

    Take cake, Sue

  • Hi im also newbie to this forum, and also feeling very anxious and scared of what lies ahead My consultant suspects ET and i have had some more specialised blood tests done due to constantly raised platelet readings and may have to have a bone marrow biospy my own Gp supects pv ,but will know more very soon im just on Asprin at the minute. im 62 i feel very tired i am retired now and have long term osteoarturisis which was thought could be a contibuting factor also due ti inflamation throughout my spine A myloprolific disorder doesnt seem to be very common here in the uk so im glad i found this site for support im sure im going to need in the future ☺️

  • Thank you for your reply, hopefully you'll get a full and proper diagnosis soon, then you'll know exactly what your dealing with and where to go with it treatment wise, take care Sue

  • Thank you ,yes my platelettes are creeping up so need to find. out reason Asap take care Sue

  • I have just had a postive test for jak2 so my consultant wants to see me end of April instead of june! Does anyone one if what we eat makes it worse regarding platellet readings , im trying to help myself as well , i do like my chocolate and what with Easter last weekend ! 😀

  • Hi

    Welcome to the forum. You will find so many answers to so many questions here. There are also some amazing American forums , have a search on Google for MPN forum and some facebook groups. Information is key when you are first diagnosed.

    I was diagnosed with PV in December 2011 at age 47. It was as you have experienced devastating. I am a working Mum with 2 young boys , one has learning difficulties, and as you have experienced , my life changed over night. MPD voice and the team at Guys have been amazing . I am now very stable . I have 3 /4 monthly appointments for venesection and have the medication that works for me. This took a while to get right because we are all so different . I have claimed successfully on my critical illness insurance but as I am so stable I now have no problem living a normal life as a working Mum. Which is in my opinion one of the toughest jobs in the world :-)

    For the first year of diagnosis it was a roller coaster ride but thankfully I am now and have been for a while on an even keel. We all have a long life ahead of us and with the constant advances in the field of molecular medicines I believe we are not far off meds that will reverse our condition. Stay positive, stay well

    All the best

    Liz x

  • Thank you for your reply, it's good to hear your critical illness insurance paid out, I was do nervous filling in the forms, even asking for them over the phone, as the insurance company Legal and General seemed to reply as if they have never heard of the condition, which then made me feel like I was asking for something I shouldn't !!

    Thanks once again, Sue x

  • Hi, I have pv and legal and general paid out no problem. As everyone has said you will get so much support on this forum, joining it was the best thing I ever did! You will feel confused, scared, angry etc when first diagnosed but as you will have seen some people have had these conditions for years. I think once I accepted what I had and started dealing with it and adapting my life as I needed to then I started to live again. Remember you have good friends and great people on this forum.xx Aime

  • Hi Aimee, thanks for the reply, I suppose I'm not wanting to get my hopes up, as L & G contacted me last week to say they were going to write to my GP and consultant Haematologist. Having worked for insurance companies before I had my kids I know they will do anything to get out of paying.

    I'm not having a good time at the moment, as only last week I was told by a surgeon who I was referred to that he would not do the further surgery that I need due to my condition. I'd got my hopes up thinking that I would be able to sort out one of my hurdles so I only have the PV to cope with, now I will have to travel a distance to find a surgeon who is willing to operate, as this last one says I would require a haematologist and an intensive care unit to be available after the operation. I just feel like the rug keeps being pulled from under my feet all the time at the moment.

    Your absolutely right, I am angry, because all my life I've eaten the right foods, drank the green teas, exercised, avoided the the bad fattening foods, never smoked, admittedly the odd celebration glass of champagne or wine, holistic therapy trained, all these things I've done to try and live a healthy lifestyle, then I feel like I've done all this for nothing, it never made any difference. Only ever used hospital service when I had my children over 20 years ago. When I was admitted as an emergency case to hospital there were patients linked up to drips smoking at the hośpital entrance????? So yes! I'm very angry and I suppose jealous in way. Jealous because it's not happened to the unhealthy person smoking at the hospital doorway, it's happened to me.

    Sorry to whinge on, I just need that rug under my feet to stabilise and stop moving,

    Thanks once again for taking the time to reply and letting me know L & G paid out for you, it would help out tremendously if they do for me xxxx

  • Hi I can't see how they can pay out for one patient and not another. There was absolutely no argument with my claim, dealt with speedily and very efficiently and I felt I was being treated with respect and sympathy. I also have an income protection policy with them and they sent me the forms for this also to claim once I need to. Keep smiling, happy thoughts give us happier feelings. Aime xx

  • Hi I meant to say I think it's normal to feel angry and say why me but that's just wasting energy you need to become happy again and as healthy as you can be. Remember there are people in this forum who have had pv and other mpns for years and are still here. Someone once described it like a football league (not that I play football); breast cancer and aggressive cancers would be division one and our mpns might be division 5 or 6. It kinda puts it into prospective for me, hope it helps you.xxx Aime

  • Here, here to all of the above! Bit of a body blow when you're newly diagnosed & because our condition is pretty rare & more importantly, can't be seen by others, it can be a lonely place to be. This is where this site comes in....current research, support & information - as you've already discovered! Bottom line is your experience will be unique to you but there are some commonalities that we all share-fatigue for one; that bone weary tiredness! So, looking after yourself is paramount-good diet (Twinkly's the one here!), exercise & rest when you need. It's about giving yourself permission to nurture & self soothe yourself; doing what you instinctively know is right for you! Share your fears here too-we all have 'em but also the positive stuff so we all become better informed to make the choices which feel right for us. A sense of humour, too, goes a long way! Yes, MPN's are pants, but the way I look at my PV is yes, I have it but it doesn't have me. I manage it with meds which keep me safe so how blessed am I to have been diagnosed in the first place! The alternative would be a stroke or something equally grim! Stay well & warm, loadsa love coming your way, Poll x

  • Thank you for your lovely reply, I was amazed by the response I got to my first post, all responses had very useful information in, I had my first shopping trip out yesterday and was surprised how it zapped my energy, before I discovered I had this I would think nothing of spending a whole day shopping, now I'm a little frustrated I can't do this. Feel like now I'll have to get in training for this, a bit like a marathon ha ha! many thànks once again xx

  • Hi,

    You have done the right thing joining here, even if its just to let off steam.

    I was diagnosed 2 years ago with PV and i know how you feel.

    If you are unable to work, then like any illness you would qualify im sure for ESA, DLA or whatever its called these days.

    Paul

  • Thank you for your lovely reply, I was amazed by the response I got to my first post, all responses had very useful information in, many thànks once again, I'll keep logging on for information, seems to be the best place to find the honest truth xx

  • That's so right ..you are unique and special !! So treat yourself every day to what you need ,,long soaks in lovely bath ,with badidas ,,or fenjel ,,dreaming of the fireman .or southern beaches ,,eat like a king ..strawberries ,blueberries ,peaches ,pears ,..if you can't eat ,,get a nutri bullet and smoothie your cares away ,,feet up take a rest ,,only watching. Marigold hotel ..or hello dolly ..( these things should be on the national health ) .....nothing makes life complete like a few squares of chocolate ,,,,yes I did say a few squares ,,even sitting you can do your exercises ,,breath in through your nose out through your mouth ,,fill your lungs ..and sing along to the adverts ,, we are here for you ,,never doubt it ....twinkly ....xx

  • Thank you for you lovely reply, I was amazed by the response I got to my first post, all responses had very useful information in, many thànks once again xx

  • Hi,

    Oh boy,

    I remember when I was first diagnosed, it hung over me every waking ( and sleeping ) hour, I used to wake up in the middle of the night and lift my arms above my head to make sure I hadn't had a stroke!

    Your panic is not a bit unusual believe me, but the more that you learn about this rare cancer, the less panic stricken you will be, believe me.

    I'm 60 and was diagnosed with PV 6 years ago. I take hydroxicarbamide, aspirin, and have venesections ( give a unit of blood). I'm really really well - touch wood.

    PV is not curable - yet - but it IS treatable, very much so. So here are my tips for keeping your head from spinning, and from worrying .

    1) don't be frightened and don't worry. There are numerous folk out there who have had this for up to 30 years. New drugs are being developed all the time.

    It will take you between 12 and 24 months to become comfortable with your condition. Seems ages away but it will fly, and then you'll forget about it most of the time.

    2) be your own " project manager" get to know your own body and health intimately.

    Read all you can, question your consultant even if he isn't approachable - not all of them like it, the good ones don't mind and will work with you. I moved from our local hospital for this very reason - my haematologist was very much a " do as I say " which I didn't like. I decamped to the Christie in Manchester, a centre of excellence and well worth the hour and a half journey both ways. I have a superb haematologist. You can move if you want to.

    Ask your haematologist about Ruxolitinib, and other drug options if Interferon doesn't suit you ( may take some time to suss that out ) If he isn't forthcoming then I would find a consultant who specialises in PV. It's worth a journey every 5/6 weeks for your health.

    3) look after yourself. As Violet says, relax, don't rush around. I retired fully, which may not be an option for you, but it IS important to prioritise and have much more down time.

    4) drink at least 2 litres of water every 24 hours, and try to walk for an hour every day.

    5) watch your diet. Cut out all processed and ready made food if you eat any. Make food from scratch, lots of fruit and veg. I tend to stick to organic foodstuffs - my cousin works for Waitrose and comes up with horror stories re chemicals and antibiotics added to and sprayed onto our food. I never ever eat meat unless it's organic and neither does he. I buy mine from M and S. Expensive, yes, but you wouldn't put rubbish petrol in your car! Try and cut out dairy produce, ( if you don't want to, buy organic ) and caffeine, ( that includes decaff and tea by the way) and cut down on alcohol if you partake in any of those.

    I know I sound whacky but I've found that all of these have helped me massively.

    We are what we eat.

    Sorry to sound bossy but lots to say and not much time.

    Hope it helps.

    Chin up, you'll be fine, honestly.

    Love

    Louise

  • Not sure if I replied generally to everyone as a post or to your post so just to make sure here's my reply directly to you post ( proves I'm not used to this type of thing ha ha! 😊

    Hello Louise, thank you for your reply, I know the Christie Hospital as I'm originally from Altrincham, and if it came to it to switch it wouldn't be that far away for me to travel to now as I'm in Cheshire. I did a little drug research myself on what I was on, found it to be the cheapest option, which in away didn't surprise me as the NHS is so strapped for cash at the moment. This forum has been really informative, and the response I've had from my first post was amazing, which I was a little nervous doing as I've never been joined to any forum via internet. Thanks for the advice re nutrition side of things, sadly I'm very restricted at the moment in what I can and can't eat due to temporary emergency surgery that I had to have. Fingers crossed though I'm seeing another consultant about correcting that so I can lead some normality back into in my life. I do find it difficult not doing thingś, as I was always a person who was rushing round doing 10 things at once, from the time when my children were very small, to even now worrying about them even though they've mostly grown up. Even a shopping trip to a place I used to love to spend all day at took it out of me and we only spent a few hours there wandering around, all very nervous as it was my first trip out since all this happened. So I will be taking it easy today, as I haven't simply got the energy, thank once again for the reply,

    Love Sue

  • Hi Sue,

    Thanks for your lovely reply. The forum is so good at keeping everyone in touch.

    Keep your eye on the MPN website too, as there are forums all over the country where you can meet folk face to face and learn a lot more.

    We had a successful one at Christie's last year, and I shall be attending the London one at St Thomas's on July 8th.

    A more useful and important date though is the patients day on November 14th also at St Thomas's.

    Well worth attending.

    These get togethers really are good - not a bit maudlin or depressing, everyone's incredibly upbeat and friendly and it's so good to meet others in the same boat.

    I found PV to be a bit lonely and isolating here in Cumbria, couldn't find anyone else who had it and so had no one to chat to.

    I buddy a few folk now, and have regular chats via email, have met up with a couple of people too.

    Anyway, if you ever want to contact me my email is

    louisebroughton@btinternet.com

    07921057552

    015394 45612

    Do let me know how you're getting on.....hope you feel better soon.

    Love

    Louise

  • Hello Sue and welcome to our forum, there's not much I can add to all these lovely replies you have had, except to say, if there is anything we can do to help, let me know, I have leaflets I can send you about PV and Interferon if you would like me to, just email your address to me at maz.cd@mpnvoice.org.uk. Best wishes, Maz

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