Hello Again

This is my second time on here . I came on when I was first diagnosed and was feeling ok about it all but then wham I was scared and decided that denial was the way to go but of course it didn't work !

My diagnosis is in favour of ET but I have got a small amount of fibrosis ( my platelets were 1072). I take aspirin and hydroxycarbamide 11 per week .

I go to Hinchinbrooke Hospital in Huntingdon and they're very good although I find the McMillan centre a bit of a gentle reminder . I go there every 3 months but I find I get depressed after every visit for about a week even if my bloods are ok .

Physically I'm ok ish but I seem to be an emotional wreck and I feel a bit selfish worrying about myself .

Does it get better ?

10 Replies

  • Hi Helen

    I have ET, Jak 2 positive diagnosed in 2012, following a portal vein thrombosis. Scary stuff particularly as I have other medical issues. It definitely does get better I was very sacred and worried in beginning but though no one wants an illness I accept what I have and don't worry to much about it. Now I am medicated and have gotten used to it I am fine, working and managing to live a normal life despite the fatigue that often hits me.

    I think the thing you need to focus on is that most people with ET live out a normal lifespan . As long as of course we take what meds we need when we need them and look after ourselves. You will find many people on this site who have been living with this and taking meds for years. I hope that this will reassure you a little. It certainly has helped me especially when I was first diagnosed and it was all new and frightening to me.

    Don't feel selfish about worrying about yourself, its quite normal. Please just don't let it take you over and run your life. There's plenty of people hear to help you or just listen if you need to talk, want advice or just want to have a moan.

    Take Care and let us know how you get on. Liz C x

  • Thank you very much for your reply Liz it's so nice that someone understands .

    You're perfectly right I am more than this disease . One of my sons has congenital heart disease has had 3 open heart surgeries and has an ICD and I'm always saying that to him . You made me realise that it was taking over my life and I don't want that to happen .

    It's nice to know I am normal although my kids and grandkids might disagree lol.

    You sound very grounded and I hope you are keeping well xx

  • Thanks I try to be. i am doing ok thanks. But believe me I have had bad days too and it's nice to know there is someone out there who will understand too if I have another one! If you ever want to or need to talk do feel free to send me a message. Take it easy and remember don't be too hard on yourself x

  • Dear Helen,

    I know the feelings that can arise around appointments. I think its something about not being able to ignore our illness then and it can flatten us. However after living with PV for 27 years I now manage mostly to just get on with life and hospital apointments are an opportunity to get on with some reading while I wait...! You are bound to have ups and downs but don't be too hard on yourself.

    We must be in the same neck of the woods as I'm in South Cambs, go to Addenbrookes.

    take care


  • It is scary, especially when you are first diagnosed. I have ET and take 16 x 500 mg Hydroxy per week and have done for well over a year, it was a lower dose before that.

    It was only reading posts on this forum from other people who had ET that my mind became more settled. I have never met anyone else who has ET, there may be some in the waiting room at the clinic but I don't really want to go round everyone and ask them what is wrong with them!! (Might be interesting though!)

    Also after taking HU for over 18 months now I am more used to it. I keep a record of my blood results so I can compare them over the year!

    Best wishes

  • Hello Helen, it isn't selfish of you to worry about yourself, it's perfectly understandable to sometimes have these feelings, it can be very challenging living with a MPN and taking the medication that we have to, and yes, it is best to stay positive about it all, and try not to let it rule your life, but sometimes that can be very hard, I know myself that for the most part I don't ponder too much on my ET, I don't want it to rule my life, I am going to rule the ET, but there are times, not very often, that I do think 'why do I have to feel like this' but then I think of all the good things in my life and of all the things I can do and feel luckier than a lot of people out there, but as I said, I know it can be hard sometimes to stay positive. We all know and understand what you are going through so don't hesitate to come onto this forum and let us know how you are feeling so we can help, and if you would like to have a buddy then email me at maz.cd@mpnvoice.org.uk and I can send you the details. Best wishes, Maz.

  • Thank you Fee and Lizzie for your replies .

    I am feeling less sorry for myself today think it was because I just had a tooth out .

    I have been taking HU for a year as well but I just seem to have had a bit of a blip .

    Lol about the waiting room Lizzie when I first went a woman stood up and shouted across the room to me " What you got then " maybe we should try it ! .

    You have all made me feel much more positive so thank you .

    And yes Fee I live in St Ives Cambs so near you .

  • Thank you Maz have just read your reply too .

    Such a lot of lovely positive people on here and I hope to be able to offer support to others too .

    Love Helen

  • Hey Helen you got some great responses there, what a great bunch of peops. . . As been said it does get easier and don't beat yerself up ever as I still get twitchy at appts after 9 yrs. . . I wish I could be all macho and not let it affect me but life ain't like that so I've had to learn to try and chill my beans a tad. Easier to say than to do I know.

    Anyway after all the encouraging comment you've had I hope you feel less stressed at your next appt. . . Hmm if I could only practise what I preach I'd be a world beater. . . Good Luck JR

  • Thank you JR I feel less stressed already just talking to people who 'know'.

    Lol "chill my beans"


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