I was diagnosed in 2013 with Polycythemia Vera (PV).
I was not diagnosed for years as I also have an autoimmune liver disease Primary Biliary Cholingitis/Cirrhosis aka PBC diagnosed 1988. In people with PBC, the immune system destroys the small bile ducts in the liver thinking they are foreign and need to be destroyed and this can stop the liver from functioning. My liver specialist told me that the high platelets etc. were due to me having PBC.
It was not until I changed specialists in 2007 that it was picked up….even then I was only put on aspirin for a few more years. Then at one visit my specialist said he was not happy with my numbers and sent me to an oncologist…. after blood tests he informed me I had Polycythemia Vera (PV) and was Jak2 +. My specialist put me on Hydrea.
Thinking back over the years to when I was first diagnosed with my autoimmune liver disease in 1988, I was itching then after my showers and thought it was down to my PBC but it could have been the PV even back that far. I try and stay active by doing volunteer work one afternoon a week and playing carpet bowls one day a week. I do push through my fatigue and do things.
I feel better now that I only have myself to care for. I looked after my husband at home for nearly 8 years after he had a massive stroke. He could not walk, but he could take a couple of steps to be able to use bathroom and move to his armchair. He had aphasia and could hardly talk. It was hard at times with the fatigue I was having but I am a positive person and tend to push though pain etc. I take my prescribed medication and over the counter medicines that the doctor has recommended to cope with my various ailments to get through each day.
I take antihistamines to help with the itch – it does not stop it but it is manageable. I also take PanadolOsteo to help with daily pain and help me cope with going about my daily living. I have too many conditions to write down and friends say to me they are amazed how I cope as I have a lot of health issues to deal with.
In the past I have had a lot of operations and present health issues such as PV – PBC – Osteoarthritis -Fibromyalgia – RA – Gerd – Hiatus Hernia – Ulcers – Osteopenia – back issues but I get up each morning and try and enjoy the day and hope to for many more years to come.
I’m going to downsize and go into a retirement village near my family which will make it a lot easier for me, as the house and garden are too big for me to look after, so will look forward to a new chapter in my life. I am 73 this month and hope to still enjoy my life for a lot more years to come.
