The life I had…
by Alison Scott
This you tube clip shows what my life was like before PV, although, no one really knows exactly when the PV starts so it may have been going on a while. As you can see my life was pretty blissful, well blessed.
When PV struck, it was diagnosed with an HCT (hematocrit) of 62 and I was post operative for another operation, unrelated to PV, BUT..I was not getting any better.
So…..it was a gastroenterologist who said to me, you are so red, are you always red?? Now living in Hong Kong,yes, I ws often red, too much sun!! But he quickly took a blood sample to test..probably saved my life . A gastro dr noticed something wrong, not the gynecology dr I had been seeing during the operation, or my GP who knew me socially also. I am very thankful to the gastro dr.
The worst thing about diagnosis for me, was the battle in the mind..called flat out panic, you know the kind that wakes you at 4 am with a gnawing in the pit of your belly. That thought, will i live long enough to see my grandchildren. I battled this for 4 months, Philipians 4, vs 5, 6 and 7 became my source of coping in the night when all the house was quiet.
The physical symptoms of sheer exhaustion were compounded by worry. One dr prescribed Hu (hydroxyurea) which afer two weeks I decided forget it, hated it. Then changed dr who said you do not need Hu , you need phlebotomy. So, weekly one pint was taken for 6 weeks. I funnily enough did not find the procedure painful at all, blood taken out of side of wrist, easy….
My recommendation, change dr if possible if yours does not listen to you and only wants treatment convenient to him. ie phlebs take longer than dishing out Hu.After 6 weeks blood levels normal, and have remained the same for a year now, no more phlebs or medicine, just regular testing to check all okay.
Now, I have no panic, life in the you tube clip is becoming a reality again as I now walk 4 miles a day
The pics are of, the beach over the cliff, pic 3 , my favourite walk, just a sheer drop down the cliffs, hundreds of steps, then the first pic is of walkign on said beach…jan this year one year after diagnosis and back to walking…….hiking miles, love it
and have travelled the globe this year. For me it was conquering the fear in the mind and getting on with life again, after a life interrupted. I now rarely remember I have PV but it was the mental mindset that did it, the positive approach certainly helps, at least it helps me. Now I understand we are all different but maybe my story may help someone!!
I watched a clip by Ruben Mesa, he was also suggesting the power of mindset in helping…. I look at life differently now since the diagnosis but the PV is only a part of my life, it does not define me, whereas at first until we gain control of the mind it overwhems us.
Thats my story so far….whats yours?
© Alison Scott and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Alison Scott and MPNforum.com with appropriate and specific direction to the original content.
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Comments on: "Alison’s story…" (3)
Thank you. I enjoyed reading your story. By happen chance, I was just in the middle of a little anxiety “fever” – so now am going to meditate and then have a little walk as the evening cools.
Enjoyed reading your story. I believe in the old saying “What we think, we become”.
Thanks for sharing your story. It is one most of us are familiar with. Getting an accurate diagnosis, (I was sent to treatment for ET by a neurologist), getting the right treatment and over coming the fear. Again thanks for taking the time to share your story.