Hi,
I would like to share with everyone the journey my Mother and myself have been through over the last 16yrs.
It started on Christmas day 2008 when I decided to take my dog (Bayley) for a walk along with my partner prior to tucking into our Christmas dinner. I just had my 40th birthday a few weeks earlier and was fit and healthy. As we climbed a short but steep hill I noticed a tightness in my chest but thought nothing of it as I thought it was possibly indigestion. On my return from the walk I started to feel anxious and uncomfortable and sat on the sofa without touching my dinner. This carried on for the next few weeks and on occasion would suffer very bad chest pain, but due to a very busy work schedule and as always avoiding trips to the Doctors I continued as normal. One morning mid February 2009 after returning from Birmingham NEC on our yearly participation in the Spring fair I had a much larger episode of chest pain and thought this was the moment I was about to die. My partner gave me some aspirin and I felt much better. We called my Doctor and arranged for an appointment for 3 days later. I unloaded my hired transit van and returned it to the hire company and proceeded to walk back to our city centre and catch the bus home. My appointment with the Doctor came and I explained my symptoms, and they took a blood test and completed an Electrocardiogram (ECG). Immediately they suspected that I was having a heart attack and sent the results of the ECG to my local hospital where they confirmed this and an ambulance was dispatched to collect me from my Doctor's location. After receiving an angiogram (a procedure that uses X-rays and a special dye to create images of blood vessels) I was diagnosed as having a blood clot in my left coronary artery, one of the two main arteries that branch from the aorta and supply blood to the heart muscle and delivers oxygenated blood to the left side of the heart. I was unable to receive a stent (a small wire-mesh tube inserted to keep an artery open and improve blood flow) as I remember, was due to the damaged caused in that local area. It was a long time from the initial point of the heart attack and diagnosis mid February and I had subsequently lost 20-25% of my heart muscle. Approximately 12 months later my Mother had some routine blood tests after an illness and was discovered to have a consistently high blood platelet count around the 900.000/microliter mark. My Mother was diagnosed with having Essential Thrombocythaemia (ET) by her local Haematologist/ Oncologist. My Mother informed the specialist that her youngest son had suffered a heart attack 12 months earlier at the age of 40 with no real explanation of cause and I was asked to see the same haematologist for an examination, blood test, and ultimately a bone marrow biopsy. It was after this that I too was diagnosed with ET having confirmed the Jak2 gene defect. Medication is proscribed in capsule form known as hydroxycarbamide, a chemotherapy medication used to lower the platelet count to a safe level, which is approximately the 400/450/microliter mark. For several years my Mother and myself were monitored and screened to manage this rare blood disorder. It wasn't long before my Mother started to have symptoms that confirmed she was transitioning into Myelofibrosis and possibly dementia.(Mum would hoard sweet snacks in her room and this is not uncommon with people who suffer with dementia).
Mum received yearly iron infusions to make her feel better. My Mother at this time was approximately 70yrs old. Over time I noticed my Mother was losing her appetite and energy and being forgetful. She lost the ability to cook for herself and was becoming very confused. One time while having caught an infection my Mum collapsed while in the bathroom and blacked out for a short time, Mum received home help for a short time but the falls became more frequent. Mum was eventually admitted to hospital for nearly 2 months and also caught COVID while in hospital. It was determined that Mum would need to go into a care home and she was housed eventually at a suitable location close to her family. In July 2024 she was diagnosed with vascular and Alzheimer dementia. Along with her Myelofibrosis Mum declined quickly and would complain of choking when she ate and eventually refused to eat or take her medication. After another infection and fall Mum was admitted to hospital on the 13th Dec 2024 where she remained until the 24th Jan 2025 when she was then admitted to a nursing home. Mum basically was living on lemonade alone at this point. I went to see Mum on Mothering Sunday with flowers and an ice cold sprite lemonade and she was at peace. Mum thought I was her boyfriend and that she would like to be married in heaven to me. Mum spent most of her time asleep and was losing weight at a vast pace, recalling touching her thigh and it being smaller than my wrist. I new that Mum's time on earth was going to come to an end soon and the following Sunday I visited Mum and she looked uncomfortable and her features were upsetting to look at. The following day I travelled to Zambia to be part of an humanitarian project supplying much needed plants for growing vegetables in the individual family huts nursery gardens, and supplying a water filter for a previous water pump installed by a Zambian charity. We helped another remote village drill for water inside the village grounds which would prevent the long distance that they needed to travel to find water and erected solar panels to give a much needed umbrella of light over the village grounds. This was a very rewarding trip and was finished off with a trip to the Victoria Falls, which if you have been is a very spiritual event, let alone the noise and be prepared to get very wet, do not wear a rain coat, it will spoil the moment, believe me. I returned to the UK Tuesday 15th April at 6:20am and my phone had reconnected to the phone line. The first message I received was from a good friend of mine explaining that 4 days earlier a mutual friend of ours had had an heart attack and his wife was unable to revive him with CPR. I was gutted and would wonder why I had survived myself 16 years earlier. I finally got through the door at around 1pm and was unpacking my things and thinking of visiting Mum that afternoon, only for my auntie to ring me at 1:35pm telling me that she had seen Mum that morning between 11am and midday and that she received a call from the nursing home shortly after 1pm that Mum had passed away. It was a relief and at the same time heart breaking, there was nothing anyone could do in her last weeks except make her comfortable.
If there are other people out there who might read this message who have friends, family, loved one's, and colleague's who are suffering from ET or MT it might not be visual, but they are dealing with a very nasty disorder that can creep up on them in many forms. Myself I'm currently still on a 500mg Hydroxycarbamide capsule per day with and extra one for good luck on a Sunday. I feel my spleen getting larger and uncomfortable and have also had a venesection, a procedure to remove excessive red blood cells. I have thoughts of my future and what is install for myself in the coming years. I stay fit and eat a good diet, although some back problems have slowed me down. I still work full time and continue life the best I can.
Thanks for reading our story.
