Although my bloods were consistently up, and going up, my first haemotologist said he was very surprised at my BMB result of ET. He also told me he is an optimist, while putting me on daily asprin, a plan to watch & wait. At the outset of Covid in February 2020, he sent me of on my merry way while saying I will see you in 6/12 months time. This was just at the outset of the Covid pandemic reaching Ireland & our subseqent lock downs.
I haven't seen or spoken with him since that day!
Following my official diagnosis, my platelets continued to increase. I went through 18 months of frustrating & upsetting teleappointments with a series of interns, including one who knew absolutelt nothing about MPNs. I contacted the Haemotologists secretary on a number of occasions regarding my health concerns . She was rude, incredibly unempathetic and obstructive with regard to accessing any information, advice or appointments. The specialist nurse I was assigned to knew less than me about MPNs or ET!
Last July, following an A&E referral for Cardiology concerns including breathlessness and bad chest pains, I had a most upsetting face to face appointment with "a soon to be Consultant" (her words) in my local haemotology/ oncology department. I was informed by this same doctor( the soon to be consultant!) that my myriad of symtoms were in my head, nothing to do with ET, their MPN department and told me to go and get some counselling for myself. I left her office in tears.
It is important to note here that early in my diagnosis my daughters contacted a cancer support counselling service for me which I attended attended through out this period via phone . The counsellor was excellent and helped me come to terms with my diagnosis and to the changes to my quality of life due to my symptoms. However, and ironically, this very counsellor was one of the strongest encouragers, along with my daughters, of the need for me to get a second opinion regarding my symtoms their impact on my quality of life and appropriate treatment for same!
MY JOURNEY
My GP did not want to refer me for a second opinion without the haemotologist's agreement. She tried to contact him but he nor any of his team reverted to her or me at any stage with regard to this.
However, on foot of my A&E visit 8n July and due to Cardiology concerns my GP did refer me to a private cardiologist in Dublin for a cardiac assessment. During the assessment I was admitted as an emergency due to intial symtoms at the assessment . They carried out the full range of Cardiology tests & investigations. After a few days, I thankfully received their all clear from a Cardiology perspective.
The cardiologist, was equally perturbed as me regarding my inability to source a second opinion. He said I was totally entitled to seek a second opinion . After discussing the Cardiology test results with me, my blood results and symtoms he was more than happy to send a detailed referral for me to Dr Conneally 's MPN clinic in James Hospital and updated my GP also with regard to this.
Finally, I was successful. I had a referral to an MPN specilist & clinic for a second opinion
I received an appointment to see Dr Conneally in August 21. She carried out a very thorough consultation with me and ordered the full range of blood tests. She listened to everything I described about my symptoms and how much my quality of life was being affected by them on a day to day basis. She took all I said seriously and without judgment while also asking a number of very pertinent and relevant questions about my general health and history. In view of her assessment and my initial bloods prescribed hydrea for me.
Following on the range of blood tests she ordered my diagnosis was subsequently narrowed down to ET Jak2 positive ( my previous department had said I had no mutations). I had a second consultation with one of her team . I was fully informed of what my new diagnosis meant and the treatment required.
Most happily for me, I was admitted as a patient to this clinic and am now attending Dr Conneallys MPN clinic for my ongoing treatment.
At my intial consultation I was imprescribed 500mg hydrea daily. On a later consultation Dr Conneally subsequently upped this to 1000 mg three days a week & 500 mg for the other four days days. My platelets, as of last week are now down in the 200s 🙂😄🌟 . I need to remain on this dose for the foreseeable future to maintain my blood count at this level.
In comparison to this time last year I feel so much better 🤗
My symptoms, including the horrendous headaches and breathlessness have totally subsided. I have my ups & downs and still have fatigue. However, in reality this is just part of the course in general for us. I have learned to accept and manage the fatigue by simply taking each day as it comes and enjoying whatever and where ever the day brings me.
Everybody tells me I am looking fantastic 🙂. I respond by either saying thanks ," I am feeling good today"or alternativly "thanks not feeling so good, so just taking it easy today."
Dr Conneallys team have been wonderful. They listen to me while also giving me proactive and positive advice and information on what I can do about any health issues
My experience with this team secretary, interns, nurses, shos and consultant has been so refreshing & such a change from my previous experiences in my local oncology/haemotology department and team.
Almost two years down the road from my initial official diagnosis:
My recommendation is; should you feel uneasy or upset by the treatment you are currently receiving from your haemotology team (I felt both) persevere through whatever channels are available to you in seeking a referral for a second opinion with an MPN specialist.
MPN specialists understand what we are experiancing. They have the skills and knowledge to monitor our treatment appropriately ☘
How to get a 2nd opinion from a MPN specialist? - UK
opinion on submarine trip
Second time with a cold!
Phlebotomy second one tomorrow 
