Hannah H
Posted by

Polycythaemia Vera

Hannah H
Posted by
06 Dec 2014

I was diagnosed earlier this year and, on the advice of my haematologist, came straight to this website for some further information. I really hoped to read about other people with the condition but there were no personal accounts of polycythaemia vera on here so I thought I would add one!

I am 33 and have just been diagnosed with polycythaemia vera (September 2014). My husband and I were trying for a baby (not very successfully) and went to our doctor who did some routine blood tests. He found that my haemaglobin was a little higher than normal and referred me to a haematologist.

I googled ‘high haemaglobin’ and came to the conclusion that I must be a bit dehydrated and that I must have overdone the wine the week of my blood test! My haematologist did some further tests which confirmed that I am JAK positive. He advised me that I have polycythaemia vera which was very much a shock! I really wasn't expecting it and I thought all these appointments were a bit of fuss about nothing.

In hindsight, I have had symptoms for years. I have struggled with migraine with aura since I was a teenager and I’ve had constant headaches for years. In more recent years, they were centred behind my right ear but I thought it was just a tension headache brought on by a stressful job. I have been taking ibruprofen on an almost daily basis for years.

Since my diagnosis, I have had several venesections and take low dose aspirin every day. I can’t tell you how much this has improved my headaches! It’s so refreshing not to have to struggle through a day of work in pain. I am very grateful to my doctor and haematologist.

As for starting a family, my haematologist says there’s no reason why we shouldn’t have children and we have been referred to a fertility specialist. She thinks that taking ibruprofen on a daily basis has possibly given me polycystic ovaries and has prescribed clomid.....so fingers crossed....

Comments

08.12.2014

Hannah thank you so much for getting in touch and sharing your experiences with us. As you say. we don't have many blogs from people with MPN and none with your condition so yours is incredibly gratefully received and will be of enormous benefit to those that are currently going through treatment.

I'm so glad that the low dose aspirin has improved your headaches and that you've established a good relationship with your consultant - that's always important.

I wish you all the best going forwards and hope that you are able to start a family - we've got everything crossed for you! You'll have to write us another blog to let us know how you're getting on.

Stay in touch and thanks again for sharing your story.

15.12.2014

Hi Hannah, 

Thank you very much for being the first to blog about polycythaemia vera - I am sure it will be a huge help and relief for the next person looking for information and support around this condition to read of your experiences. As Andy says, we have everything crossed for you, and wish you the very, very best moving forward starting a family and the future. Please do come back and share another blog with us soon,

 

Take care, seasons greetings :)