Joan S aged 79
In 2018 my GP informed me that I had persistent anaemia. She suspected that I had a slow internal bleed and referred me to a gastroenterologist. He suggested that I be referred to haematology where I was diagnosed with MPN (ET) and underwent a bone marrow biopsy.
I was quite sanguine when I was first diagnosed and felt fortunate that I had been diagnosed before any symptoms appeared. I took my brother with me for the bone marrow biopsy results. At that time was given information on hydroxycarbamide and accessed information about ET from the MPN Voice website.
Hydroxycarbamide was prescribed and my blood levels were soon within normal range. I had no symptoms, such as fatigue. I was both mentally and physically active, doing my own housework and gardening and attending cardiovascular circuit training every week.
However, in July 2020 I suffered an insect bite in the garden. I had previously had an attack of erythema nodosum in that leg. Cellulitis set in and then a leg ulcer developed so treatment with Hydroxycarbamide was stopped.
Then because of lockdown in the pandemic, the Doppler clinic was closed, so compression treatment could not commence immediately. Once the blood flow to the foot had been checked and compression could be applied, my leg soon healed.
In all, treatment for MPN was halted for six months, during which time my platelets rose. Although they did reduce slightly I did suffer from anaemia and fatigue.
I started injections of Aranesp to try to stimulate the bone marrow to produce more red cells which helped the tiredness and reduced my “grey” appearance.
I consider myself fortunate in that until recently I have not had to deal with any challenges from my MPN and think that my previous active lifestyle helped. I have been supported by my consultant and specialist nurse, by MPN literature, the website and, during the pandemic, by the webinars. Lockdown was certainly been detrimental to both physical and mental health.
My family and close friends have been very supportive and accept the information I have shared with them. Acquaintances have been harder to deal with, especially not understanding why I, who seemed so much more active than themselves, had to shield and why I was more reluctant to brave shops and public transport. The other people I have had to deal with are the doctors and nurses at my GP Practice. I found that I was explaining to them what an MPN is and how it is managed.