MPN Voice


I was admitted to hospital with a severe migraine and vomiting which started early morning. Mum and sister was extremely worried so decided to call an ambulance as I couldn't even keep water down. Until now I had managed my PV fairly well, although regular venesections had left me anaemic and hydroxy no longer worked for me. I have been a part of the Majic Trial for about 4 weeks. The guys in the ambulance had never heard of my condition and decided not to treat me.

Fast forward - four/five hours later (went into hospital at about 2.00pm) and I still had not been seen by a doctor. My sister was getting frustrated with having to repeat herself all the time about my condition and to make things even worse, I started to experience chest pains. We could see that A&E at Whipps was extremely busy so my sister decided that it was necessary to become a little more 'assertive' and this seemed to work! I was immediately treated for the chest pains, dehydration, migraine and a high temperature.

The next day I was told that I had a heart attack, possibly caused by mayocarditis. I am waiting for some further tests. The experience has left me shaken, shocked and frustrated with the number of times my sister and I had to explain the details of PV. Some of the consultants/nurses at Whipps Cross had never heard of it!!

On Tuesday 7th April I managed to buy the Daily Mail which contained an excellent copy of an article written by Dr Phil Hammond entitled "Survival Guide all NHS Patients Must Read". I don't believe in coincidences and I share this with you all because I think that it is of vital importance to us. Here's the link for those of you who are interested in this.

Hope the link works as I'm not too good at this!

Nowadays I try to stay as positive as I can. I'm still on the Rux which we feel was not responsible for this episode and I'm recovering fairly well. When I was first diagnosed I think that I was in denial and refused to let this condition beat me. Now I'm not sure how I feel. I thank the consultants and nurses for the quality of care given to me at Guys Hospital and I am totally confident that they do the very best they can for me. Let me know what your views are on the article.

6 Replies

Hi Chelsea you poor thing. You have had a really bad time, I hope things will improve very soon for you. I think the article is quite scary as we do trust the medics to do their best for us. I have been lucky so far as any medics I have come into contact with seem to understand PV. Mind you for all my bone and decompression ops I have gone private as I secured private insurance before I was diagnosed withPV and now that's my treat to myself each month, my premium! I do notice a difference with my gp, haem and clinic nurse who are more open as they know I am a member of this forum and keep myself knowledgeable about my condition.

But you take care, loads of hugs sent in this reply.xxxxxx Aime


Hi Aime and the hugs are gratefully received! The heart condition has left me with some numbness in my hands too and typing has become a little more difficult but I can still do things and I consider myself very lucky. All the very best to you Aime and regards xx



Sorry to hear about your problems, hope you are doing better now.

I do agree to an extent about medical professionals not understanding the condition. When i was admitted after my varices were found i was sent for more scans, and lots of puzzlement because I had an enlarged spleen.

When i was booked in for me second CT scan, i asked 'why are you doing it, what are you looking for?', the response was 'we are trying to find out why your spleen is enlarged'. Its been recommended twice by heptoligists to remove my spleen, thankfully my haematoligist has stepped in each time and stopped it.

I said, its because i have an MPN, but got nothing whatsoever in the way of a response.

And the nurse that woke me at 1.00am to do a blood pressure test after my liver biopsy, and said 'do you have an alcohol problem?' to which i replied quite short i admit, 'why?', she said 'just trying to understand why you have varices', if you want to know read my notes dont got annoying and upsetting me even more that i was after a traumatic procedure.


I agree be armed with information and make sure those who who are close to us are too!



Hi Paul and many thanks for taking the time to reply. At least I know now that I am not alone with this experience. Wishing you well too Paul!


Hi --I am glad you had your sister with you and your mother stepped in and called an ambulance and that you are out an home. What a scary experience. I think after reading your story I am going to carry a print off saying what I have as well as the MPN card.

Do hospitals have access to any online patient info in the UK? Here in Canada we haven't got that far.

I just wanted to say hi, glad you have such a feisty family who step in and take care of yourself.


Hi jeanr, and many thanks for your reply. Yes it was a very tough experience and its interesting to see how some of us are quite symptomatic while others arnt. Here in the UK we do not have a main database where all hospitals can have access to patient information. I understand that we tried to do this but it was aborted because of the expense.

Sending you back well wishes and regards.


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