Have you ever embraced the thought “if I only had X amount of days to live, how would I spend it? I have because I found out three months ago that I have, for lack of better words, been given a death sentence. I read the literature daily, some days hourly in hopes of a brighter outcome, yet all of my research leads to the same. I have found myself praying that I will be different. My life will not amount to an increase in a percentage, or a statistic of fatalities to Myelodysplasia. It’s a big word, for a group of disorders affecting bone marrow, a significant need for blood donation, and a grim prognosis.
Two years ago I began getting sick. My colds would linger, and, frequently turn into pneumonia. After awhile I started to realize that I spent more time sick than I did well. Doctors had speculations of what could have been causing my illnesses, but unfortunately without health insurance I was denied the opportunity of further testing. Three months before I was to marry my husband I was taken to the hospital, with weakness, and extreme pain, and admitted for Kidney failure. I had lost blood, and my lab results presented with abnormalities. My husband then took a second job that offered health insurance to assure further testing, with hopes of discovering my ailment and a way to cure it.
After numerous blood draws, and lab work I was sent to a hematologist who performed a bone marrow aspiration on me. It is an extremely uncomfortable procedure for those of you who haven’t had the pleasure. After days of waiting, and four sleepless nights, we were given the results. Myelodysplastic syndrome. Fancy word was my first thought, and, probably the kindest thought i've had of the word since I originally heard it. I was told that my bone marrow isn’t creating healthy blood cells, nor is it creating an adequate amount of cells. Blood cells carry oxygen to every organ in our body, and collect carbon dioxide from our tissue to dispose of. Each red blood cell is made up of iron. Iron is what makes transporting oxygen possible. In the case of Myelodysplastic Syndrome the bone marrow isn’t creating healthy blood cells in turn making the blood cells enable to perform the job they was destined to do sufficiently. This leads to inadequate amounts of oxygen to the organs, more defective cells, including faulty fighter cells. Due to the bodies need for a certain amount of oxygen and, the inability for a MDS patient to create an adequate amount of healthy blood cells, blood transfusions become a necessity to live. Bone marrow transplants are a possibility for a MDS patient, although extremely risky, and finding a perfect match donor makes the possibility very complicated.
There are many side effects from the workings of Myelodysplastic Syndrome, including frequent infections, extreme fatigue, anemia, bruising, bleeding and being lightheaded to name a few. None of which are as serious as the high risk of Leukemia that accompanies MDS. Myelodysplasia was formerly referred to as “Preleukemia” due to the percentage of patients with the illness that have contracted leukemia. Given the patients inability to create healthy blood cells, frequent infection and risk of chronic illnesses, MDS patients are given a timeline of anywhere between 6 months to 9 years from the onset of the disease to live, depending on severity. The facts are disheartening I did not write this blog for sympathy, empathy or hugs, although I like hugs =]. I wrote this blog for two reasons. One clearly is to educate my friends and family on my diagnosis, as well as anyone else who may read this. Five months ago I had never heard of this disease, yet there were people all over the world being diagnosed with something that will forever change their life. It seems so unfair, yet all day, every day, people are diagnosed with a potentially fatal disease that most of us know nothing about until it happens to someone we love, or we read it in a blog, like this one.
My second reason, and by far the most important reason are to truly educate people on the importance of donating blood. I’m guilty. I know 2/3 of America is guilty. How many times have you been presented with the opportunity to donate blood and, chose not to for lack of time or, maybe fear of needles? I know I’m guilty. The size of that needle is intimidating. I avoided donating blood my entire life. To be honest the first and last time I donated blood was 1/3 for the principle of it and 2/3 to get out of anatomy class in college. I have only been allowed to donate that one time. After that time I never qualified to donate again due to low blood counts. For some I understand donating is incredibly scary. My husband would stand proof. For others, donating may be too difficult to fit into their busy schedule. Maybe it is a religious belief that keeps them from donating. Whatever the case may be try to remember that somewhere, someone is depending on their friends, family, neighbors, local store clerk, insurance salesman, even their senator to make the decision to give the gift of life. It just so happens that this time that someone is me. So, if you have avoided donating blood your entire life like I did, please, give it a second thought, and if you already donate regularly, encourage others to donate as well.
