Lisa H aged 55
In 1994 I visited my GP as I was very lethargic and experiencing strange transient flushing episodes even after drinking just a glass of wine. My platelet count was 1.5 million and after numerous tests, I was eventually diagnosed with ET aged 27. My haematologist prescribed aspirin plus Hydroxycarbamide and recommended that I have some stem cells frozen in case I should need them.
My tiredness improved and I got on with life with my ‘blood disorder’ as it was then known. There was no MPN Voice or helpful web-pages and I felt very alone and quite nervous about my future with ET. My haematologist was extremely helpful and would go to conferences in London and report back to me on his findings. He said that there was a new drug (Anagrelide) which was in clinical trials which may be good for me, in the future, as there were not many to chose from back then. No one in the UK had been on Hydroxycarbamide for more than 10 years at that time, and I was concerned about being on a cytotoxic drug all my life.
In 1998 I had an opportunity to move to the US for three years with my partner and was excited at this prospect. My haematologist wrote up my records for my new US haematologist and made sure we would have private health cover, which we did.
My new US haematologist recommended that I only take aspirin, as I was young and healthy and I complied. My platelets were extremely high (1.5 million) but I was advised that this was okay. I got married in 2000 in the UK and we visited Dr Tefferi at the Mayo Clinic about the possibility of having children. He said that lots of ladies had successful pregnancies with ET but there was an increased risk of miscarriage in the first trimester and risk of clots in the umbilical cord towards the end of the pregnancy so he advised having a high risk obgyn too, which I did. He also advised me to have some of my umbilical blood taken, at the birth of my first child in 2002, and stored as this would be a direct match for me should I need it in later years and a 50% match for my children. We went ahead with this. I had my second child in 2005.
I remember one funny thing – when I called my mother in the UK to tell her the exciting news that I was pregnant… first of all she said “please call back as the fish and chips have just arrived!” When we did call back later – she screamed and said oh no – you are too ill to have a baby with your blood disorder and I had to reassure her that it was going to be okay.
Both of my pregnancies were induced at 38 weeks as soon as the baby’s lungs were working well and I had no complications throughout. During my pregnancies, due to my increased blood volume, my platelets came down to a nearly normal level which pleased my doctors and I was monitored closely throughout.
In 2010 we returned to the UK and I was appointed a new haematologist who was very concerned about my high platelet level. I was now in my forties, so was offered the option of Hydroxurea or Anagrelide. I have been taking Anagrelide since then but when I next am able to have a face-to-face consultation with my haematologist, I plan to discuss why I need to be on Anagrelide as it seems lots of ET patients are on Aspirin alone until they are 60. I would also like to explore whether I should consider pegulated interferon or another treatment instead. Being diagnosed in my 20’s I am very aware that I will need medication for a long time and wish to ensure that this is constantly reviewed as I age and when new options become available.
In 2017, I saw a poster, on the wall, at my haematologist appointment which mentioned MPN Voice and I could not believe it! No one had ever told me about MPN Voice and at the first seminar I attended in London that same year I met lots of other patients with ET; it really moved me and made me quite emotional. I was so impressed with the MPN website and found out that I did not need to pay for my medication, which again I was unaware of, plus I received so much support and information at the seminar. I also arranged an appointment with a consultant at Guy’s which was very reassuring.
Recently I had some additional medical complications which are probably due to both ET and just getting older. In 2007 I had some lower back problems with bulging disks. I was diagnosed with migraines in 2013 and take Sumatriptan when necessary. Also I saw a Rheumatologist in 2014 for pain in fingers, neck/shoulders and hips. I was diagnosed with fibromyalgia and prescribed Amitriptyline which helps so much with the pain giving me undisturbed sleep and lets me carry on with tennis, skiing and other sports which I love. I also have hip impingement and have been told I can have a replacement hip when it gets too bad. For the pain in my shoulders and neck I use Versatis patches which, along with the Amitriptyline, help hugely.
I have always suffered from extremely heavy periods and used to take the pill before I was diagnosed with ET to help with this. This was stopped as it was deemed unsafe at the time. Recently my haematologist recommended Tranexamic Acid. I take two per day, only on heaviest days, and this makes life so much more manageable. I wish I had been aware of this option before.
Generally I would say that I remain well and have had ET for 28 years now – in fact more than half of my life. I try to read up on new medications and procedures and look forward to the MPN Seminars starting up again in-person for this reason. I try to remain upbeat and as healthy and active as I can. I realise that I will be living with ET for a long time and endeavour not to let it change how I wish to live my life, within reason. I work part-time as a Clerk to Governors for a local Primary School which I really enjoy.
Good luck to everyone starting on their journeys and remember to be your own advocate, ask questions and find out what’s best for you, as we are all individual patients, at different ages with different diagnoses.
I can’t recommend and thank MPN Voice enough for what they do to inform, support and help us on our way. Thank you – I now don’t feel all alone with this as I did for so many years.