Tracey

[tracey1003]

Hi im tracey from australia been dignosed with pv and also hct have been waiting to see the hematologist for 2 years had to get really unwell first then got an appointment. Put on low dose aspirin and had 3 vsections and feeling a lot better so terrified ive already had bowel cancer 5 years ago so feeling very frightened

But trust my gp so much hoping the hematologist is right having vsections once a month and blood tests every fortnight if anybody can shed some light on this disease to help me cope that would be wonderful.

[Mazcd Partner MPNVoice]

Hello Tracey, it must have been quite distressing for you having to wait so long to see a haematologist, especially with your previous medical history of bowel cancer. Glad to hear that you are feeling better now. I would suggest that you read as much as you can on our website about PV, mpnvoice.org.uk, I am sure this will help you. If you feel that you would like to have a buddy to talk to then please email me at [e-mail] and I can send you the details, a buddy is someone you can talk to about your PV and how you are feeling, the buddy will have PV so will really understand how you are feeling. Best wishes, Maz

[tracey1003 in reply to Mazcd]

Thank you so much for answering back. Yes i was quite stressed and kept thinking that there was nothing wrong that why they never called. Evan the hem. Said i know youve on the list for 2 years but there was a problem with our booking system. Oh yeah! Feeling a little panicked but yes i would like someone to talk too.

[Aime]

Hi Tracey

You have come to the right place to get medical advice through Maz and support from people who understand what you are going through. We all have felt frightened for a start and especially after what you have been through already. I have only been diagnosed with PV since 2012 but lots of people in this forum have had the condition for many years and are still here.

As Maz says find out as much as can about your PV through the link she has given you and don't be scared to come onto the forum and say you are worried, etc. you will get tons of support from other members.

Eat healthy, exercise as much as your condition allows, drink lots of fluid and speak to folk on this forum. It was the best thing I did and have made lots of friends, some of whom I have never seen but they give up their time to answer me when I am worried, etc.

When you go to your haematology appointment go armed with questions written down so you don't forget. Get all worries put to rest and you will feel better.

Keep in touch, kindest regards and a HUG, Aime xx😺

[tracey1003 in reply to Aime]

Thank you for that and i will definately start to research and get more knowlegble

Thanks Tracey

[johoho in reply to tracey1003]

Tracey, youve really been through it. Im so glad you are now getting the treatment and care you need. I hope that like me you will gradually start to feel more like your old self, I know i did. It took a few months and lots of venesections for me (my 9th tmorrow) but i have now pretty much gone back to how i felt before i fell ill. Good luck to you. Xxx

[tracey1003 in reply to johoho]

Thankyou

Reading the posts from everyone really helps

Im so scared.

At the end of the day im here so thats all that matters

So happy your feeling good

[mickey64]

Hi Tracey, I think you have two posts out there and I answered you on the first one. Best of luck to you and this is a great forum full of wonderful people! Mickey

[JoeyCatfish]

Hi Tracey - I'm also in Queensland Australia. Just south of Gympie. I am new to this forum. My ET diagnosis was confirmed about two years ago. A new English GP in my town noticed my high platelet count in my records and further tests - a BMB in Melbourne whilst visiting family - confirmed it.  I also have felt very isolated.  No one seems to get It!  Unfortunately for me, the symptomatic fatigue is persistent.  I've lost my job and I am trying to hold onto my home for as long as possible! Where do you live in Qld? What is your treatment? Who is you haematologist? I've found the Leukemia Foundation very helpful in linking up MPNs across Australia to share experiences  but sadly they have not held their phone forums for MPNs since late 2015. Would like to help you if I can. Kind regards JoeyCayfish

[tracey1003 in reply to JoeyCatfish]

I am in cairns. My hema is Dr Manoz he is at the oncology unit in cairns. I also went to a meeting at the luekamia foundation it was good. She doesnt know of anyone else in cairns. I am always tired. Start so many things bit just cant finish. This mpn society has been wonderful making understand whats happening and what to expect at the moment its the bible for me read it constantly. Any imformation is wonderful. Thankyou for replying and yes your help would be appreciated 

. Thanks Tracey