My Blog

August 26th 2016

I am not one for blogging and have never blogged but thought I would write a few words about me and my life,  my story is on this Website about being diagnosed with PBC.  My PBC does not worry me apart from the itch and the fatigue,  it is all the other issues I have such as osteoarthritis, osteoporosis, fibromyalgia, hiatus hernia, ulcers, Gerd, and was diagnosed with a chronic blood cancer called Polycythemia Vera (PV) and take aspirin and a cancer drug called Hydroxyurea for the rest of my life.

What is a couple of more medications with all the others I take and another disease to cope with,  at least I wake up each morning and now have a mission in life trying to connect PBCers around Australia and NZ.

Australia is such a vast country and it is very hard to try and connect people diagnosed with Primary Biliary Cholingitis/Cirrhosis known as PBC.

I have had a lot more time on my hands since last year,  my husband Bill passed away in February 20015 after a short illness.  I was in full time carer after he had a massive stroke while we were on holiday in the UK in May 2007 visiting family.   He was in hospital for four months before he was allowed to fly back to Australia, he went from hospital to airport and the from Melbourne airport to hospital for a further month.  He could not talk or walk but he got better in his transfers and could say a few words enough for me to understand him,  the first 18 months were very tough but we got through it.

When he too sick last year they found out he had lung and liver cancer and I was told he had 6 to12 months to live, he passed in 6 days. We had a lovely day on the Saturday and when I went in on the Sunday morning he was in a coma and he passed early Monday morning.

Since 2007 my life was not my own,  being a carer is a full time job and after I lost my husband I felt I did not have a purpose in life,  I do volunteer work and have done for 15 years but it was not enough so I decided to created a Website and also a Facebook support group for PBCers in Australia and NZ.

PBC is a rare autoimmune liver disease with no known cause or cure,   so I am trying to put PBCers in contact with each other so that they would not feel alone with PBC.

October 3rd 2016

I have told my story about being diagnosed with PBC and will explain about how I was diagnosed with Polycythemia Vera (PV) which is Myeloproliferative Neoplasms (MPN), previously called myeloproliferative disorders (MPD), are a group of diseases that affect normal blood cell production in the bone marrow. In this case the bone marrow causes an overproduction of one or more blood cell types (red cells, white cells or platelets). Complications arise over time due to the abnormally high number of blood cells that accumulate in the bone marrow and in the circulating blood.

I was not diagnosed for years as my liver specialist told me that the high numbers were due to me having PBC,   it was not until I changed specialists 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 a oncologist after blood tests he informed me I had PV and was Jak2 +.  and I was put 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 is 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 transfer, 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 prescribe 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 am 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 to 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.

 

 

 

 

 

 

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