Hi everyone, I am Jill and was diagnosed with PV after going to my GP for 11 years with symptoms of 3 x dvt, vasculitis, overwhelming tiredness, numbness if my feet and stumbling all over the place. My blood tests have been whacko for years but no investigations ordered. During a gastric bypass my surgeon found my liver to be huge and recent scans have found my spleen is enlarged as well. On a routine follow up with the dietician I was asked if I had heard from my GP as they had written to her twice regarding concerns with my blood results. I hadn't heard a thing so after making an appointment to find out what was going on she finally referred me to Haematology where I was diagnosed with PV (Jack2 gene deformity found on blood test). Everything fell into place after all these years when I read about the illness. I am angered and worried to death that I have had this disease for so long with no treatment. Some sites say life expectancy is 3 years without treatment and 11 years approx with and then some sites say normal life expectancy if platelet level can be maintained. I have no idea if there is scarring to my bone marrow as no biopsy has taken place but having it for so many years I am sure there must be some damage after all this time with no treatment.
After 2 rounds of venous section and being prescribed hydroxycarbamide my platelet level is now within normal range so I have been transferred to the care of a specialist nurse for continuation of care but I seem to know more about my condition than she does! I had to bring my appointment forward by six weeks today because over the last couple of months everyone has seen such a dramatic change in me and I know in myself that I feel so much worse lately. I am tired beyond compare to the point that by 4 p.m. my husband is having to ask me to repeat myself as I am slurring my words. I have had to purchase a rolling walker because I am so unsteady on my feet that I am stumbling all over. Even with make up on people are commenting on my pallor. My biggest concern is how breathless I have become with such little exertion. Even reading aloud, or long conversations I can feel the effort in my chest to take in a breath. My specialist nurse today just said "I have no idea why you have these symptoms?" She has told me to drop one hydroxy tablet on a Sunday to see if that helps.
The MacMillan website "ask a nurse" forum have been brilliant and have recommended the PNDVoice website and I have learnt more through them than through the so called specialists so I recommend it to everyone suffering with any PND related condition.
I feel like I am wasting the specialist nurses' time when I see her but I just wish I could get it through to her what it is like living with this condition. Does anybody else have a hard time talking to their health specialist and actually getting them to listen?