I had a biannual blood test to monitor my cholesterol as I had a heart stent fitted 17 yrs previously. My platelet count was observed to be 100, down from usual 150/200. I was referred to a nearby haematologist in Galway who did various tests over the next year to conclude in January 2020 that I had MDS. He advised that a stem cell transplant was my only solution and referred me to Dr. Conneally at St. James Hospital in Dublin. This is the only one in Ireland to do SCT. My diagnosis is that the TP53 gene has mutated and gone rogue making a chromosome complex problem. It attacks the maintenance of correct levels.
I was diagnosed with a rare blood cancer called Myelodysplastic Syndromes. I’d been having symptoms for a while but was officially diagnosed and confirmed in 2000. I had my first strange blood tests in the 80’s when I was in my early 20s. My GP discovered I had very large red cells and was a bit anemic. She asked me if I was drinking too much and gave me some iron and left it at that. This continued to come up as an issue every now and again for the next few years. One day my GP phoned me at work and asked me if I was lactating. I started to laugh and said had she rung the right patient? She said that my prolactin was sky high. She repeated the test a couple of times and got the same high reading.
Taylor always excelled at school and was a self-motivated hard worker. Achievement came naturally to her and she had big plans for the future. We are not sure when her major medical issues first arose, but we suspect she was dealing with some level of it for quite a long time before the obvious signs appeared.
Taylor left high school and went on to study engineering at Arizona State University pulling the typical college student burn-the-candle-at-both-ends lifestyle. In her junior year (2016–2017), our first overt signs of trouble appeared. We noticed she would be sleeping in the afternoon each day and was having a lot of nausea.
While I’ve been generally healthy for most of my life, I’ve had several instances of elective or emergency hospitalizations. The first of these involved a bleeding ulcer in which my hemoglobin dropped to around 6-7 g/dl. I was treated in a hospital in California, at the very beginning of the AID’s crisis. Although there were no tests for AIDs, I was going into shock and received my first transfusion.
My story begins a few years back…in Mérida, Yucatán, México where my brother and I were born and raised. My brother and I were the type of kids that would rarely get sick.
We were raised to be very independent, responsible, caring, hardworking people that loved spending time with friends and family and we shared a passion for helping others.
My story begins in after a routine, annual check-up with my doctor. I was 49 years young. Overall, my exam was uneventful, but a few days after my examination I received a call from the doctor’s office asking me to return for a second blood draw.
I really wasn’t concerned until my doctor said he couldn’t explain why my counts, particularly for my platelets and white blood cells, were so low. The anxiety began to climb when he referred me to a hematologist/oncologist. Healthy people don’t need to go there, do they?