Share Your MDS Story

Two years ago in September (2023) I became very ill.  I went to Urgent Care with a bad cough and just feeling bad.  They diagnosed me with Bronchitis and gave me a prescription and sent me on my way.  As the days went on I was feeling worse and worse daily.  Till after a week in bed when I went to get some water from the kitchen and could barely stand up but made it back to the bedroom where I collapsed on the bed my heart racing.  I called a place that makes house calls to come out to the house to see if I needed some stronger medication.  They took one look at my yellow skin and eyes and said you need an ambulance to take you to the emergency room. My oxygen level was severely low.  When the paramedics arrived I told them what was going on and they told me I just needed to sit up on the couch and that I had bronchitis and that was that.  They left me there.  I told my husband I really was not feeling right and so he took me to the Emergency room.  He had to wheel me in, in a wheelchair as I could barely function.  While answering all the questions I was throwing up and could barely keep my head up.  When they finally took me back and took my vitals my heart rate was at 180.  They took me back to one of the curtained rooms and drew my blood.  My hemoglobin came back at a 2.2.  They hooked me up to oxygen and eventually gave me a blood transfusion.  They had no idea what was going on.  My red blood cell count was 2.1 and white was 2.4.  I was admitted to ICU.  After a week of every scan every test that they could do they were still baffled.  They then decided on the bone marrow test that came back with the MDS diagnosis.  I was lucky to have survived this.  After 10 days in the hospital I was released.  I relapsed the next month.  But I am here today and on medication (Revlimid) that so far is keeping things in check.  I have energy back and I am so happy to still be here and luckily doing good.  Don't give up hope.  The main thing I think is to stay positive and just live every day to it's fullest.  Enjoy your family and your friends and just take it one day at a time.