Newbie

[JP2018]

Hello everyone, I'm new to the group and wanted to introduce myself. I'm Jim, I'm 58, and I was just diagnosed with PV on 10/15/18. I had a routine physical exam on 10/2 when my blood work showed that my Hct was >60 and my Hgb was 22.2. I was referred to a hematologist who immediately started me on venesection 3x weekly and he ordered several more tests including a BMB (which was not that bad actually). I am JAK2 positive. The only symptoms I've had were frequent headaches, mostly at night, but those went away after the first venesection. My levels went down to just under 45 Hct and 15 Hgb and I am now going in weekly for labs to check blood and a get a venesection if needed. I did not need one this past week, but expect I will next week. So, it's about every two weeks for now. Overall, I feel really good and remain optimistic that I'll have many more years of good life (fortunately, my doctor agrees with that prognosis). In fact, several positive things have come out of this. I've been overwhelmed by the love I've received from my family and friends, and my faith has been rejuvenated in a way that's hard to explain but very special. It's so good to know I am not alone, you are not alone either. Wishing you all the very best as you journey through this unpredictable but wonderful life.

[Marossi]

I’m glad the venesections are helping you - you must have felt quite dreadful with haematocrit above 60! I’m sure your positive attitude will really help you too in the long run. Welcome to the forum - you’ll find it a great place to find helpful information and friendly advice and support.

[JP2018 in reply to Marossi]

Thanks so much for the reply Marossi. It's strange I guess, but I actually felt OK when my haematocrit was so high except for the frequent headaches. I thought they were sinus headaches. Good thing I went in for a check-up. I am glad to be part of the group and hope I can both give and receive encouragement. All the best!

[MCW22]

Welcome JP. You will find this site an extremely useful source of information, and entertainment at times.

Carol.

[stillkicking]

Lovely to read your post JP, a warm welcome to you. We arrive here, often a bit battered and disheveled from our diagnosis, and it is wonderful to find such a supportive and knowledgeable bunch of people who really understand what we may be going through. So good to hear that you have found love and support from family and friends, and a rejuvenation of faith too. This sort of thing certainly is life changing, and not all in a bad way. I spend more time now enjoying little things that I would have felt too busy to notice before. I am often frustrated by physical limits, but I feel a stronger person inside.

Kind Thoughts,

Peter

[Susana7]

Hi Jim and welcome! It is fortunate that your disease was detected before any serious problems happened. And great that you have such support from family and friends, it makes all the difference. I too have PV (with high platelets), diagnosed in 2014 and have been on Pegasys Interferon for the last 3 years. My bloods have normalised, I feel good and and lead a normal life, with full time work and teenage sons 😊 All the best to you, Susana x

[mhos61]

Hi Jim,

I would just like to welcome you to the forum. We’re a supportive bunch, especially at the point of diagnosis when it’s all a bit confusing.

Lucky for you that you got those headaches checked out.

Mary x

[Rachelthepotter]

Hi. I echo the welcome to the forum : its been a huge help to me in all sorts of oractical and emotional ways. Do keep postong : its good to hear how people get on.

Me, I’m not at all convinced that my attitude , positive or negative, makes any difference at all to the disease or its progression. As a person I like to feel that I’ve done what I can do, and am enjoying as much as I can of life. Which is how I tried to live it anyway, before my diagnosis of MF nearly 2 yrs ago.

All the best

Rachel

[Tico]

Hi jim, welcome. Glad your getting a lot of support from family & friends. Mpn's can be a bit difficult to explain and also understand when a majority of the time you can appear to look perfectly well and a lot of people would not know we have a chronic illness. Hope you also have an understanding haematologist too. Atb, tina.🤗

[lizzziep]

Welcome, it's a bit of a shock when first diagnosed, but you soon realise all is not lost! Life goes on, mostly with out many changes. Best wishes for your future health

Lizzie

[rkhabtec]

Hi Welcome pretty much also new here. Dx end of Jan 2018 Jak 2 pos. Have been on Jakafi 2x a day. Seems to be working for me. Am happy for you also. Good Luck on your journey. They are great here.Dont have to feel alone

[ksos]

Hi JP - welcome to the forum. I joined about six or seven months ago and it's been a life changing experience for me. So much support, experience, good thinking and heart here. A friend of mine who had a blood cancer ever more rare than MPN's has always talked about the "gifts of cancer," and I have found so many, just as you say. The love and support of my family, slowed-down time to see and appreciate what's around me, more compassion, for more willingness to ask for help. Glad to have you here.

Kim

[KC63]

Hi Jim

I was diagnosed with same in May on routine check up, aged 54. Similar levels to you, after regular venesections looks like I only need them once every 2 months, we shall see at my next appointment in December. I think it would be very lonely without the support and advice from everyone here, so glad you found us! Also, if you have critical illness insurance you should be covered! Every cloud. ...! Best Wishes Karen

[Albt4z]

Hi and welcome. I’m 57, female and was diagnosed in 2015 with PV JAK2+ I too had no symptoms except hot flushes which were put down to menopause! Just a chance blood test showed high Hb and HCT per 50. Had a year of monthly venesections but now on Hydroxycarbamide. No side effects as far as I can tell. I’ve found that friends don’t really understand how serious this could be. But then I have trouble with understanding that myself. I suppose I should tell them I have blood cancer instead of saying a blood disorder.

[Mazcd Partner MPNVoice]

Hi and welcome to our forum, it is good to hear that you are coping well with your MPN and that you have a good support from your family and friends. Maz

[lavender007]

HiJP2018 from one newbie to another glad you shared it opens your world up so much.

best wishes Lavender 007