I’m working through aplastic anemia – my son helps me keep focused. | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

I’m working through aplastic anemia – my son helps me keep focused.

My aplastic anemia diagnosis was delivered on September 15, 2015 when I was 20. I was always quite active but was finding that I was fatigued, sleeping a lot, and then my gums started bleeding. I hoped this would stop, but that didn’t happen. Finally, when I was attending a local football game, one side of my body went numb.

I went to North Central Baptist hospital, and when the blood work results came in the doctor said ‘I am amazed that you were able to even walk in here.’ All of my blood counts were extremely low. So I was admitted and received transfusions. More tests followed, including a bone marrow biopsy. At this point I was referred to Methodist Children’s Hospital here in San Antonio, where there is a transplant facility in case that was needed.

I was started on immunosuppressive therapy. The first treatment (horse ATG and cyclosporine) produced no response at all, but I still had the side effects – fever, chills, nausea, and mild serum sickness, which includes joint pain.  

Six months later, my second treatment was rabbit ATG/cyclosporine with eltrombopag (Promacta®). This time the serum sickness was significant – severe joint pain, with some joints not working at all. I needed help to move around and even get through basic daily functions. I’m very grateful to my brother who helped me get through this challenge.  He also had to deal with my becoming a germophobe. With immunosuppression, I had to avoid any possible sources of infection – for good reason!

There has a waiting period to see if I would respond to the second round of treatment, but there hasn’t been much response. In the most recent meeting with my doctor, he said it was about time to consider a transplant. I was already checked for this possibility, and we found out that my sister is a half-matched donor.

My approval for a stem cell transplant at National Institutes of Health (NIH) came recently. I arrived at NIH in November with my cousin who is my caregiver as I go through this process.

My advice for anyone who has a new diagnosis of aplastic anemia is to not let it get you down. I have always been an optimistic person and I do hear about other patients who just give way to sadness, depression and fatigue. It will get the best of you if you let that happen. I try not to show the side effects of treatment I am experiencing, although I can’t always manage that.

Making connections is important! I have a friend, Diane Setser,  whose son is an aplastic anemia patient. Her whole family has been my rock through all of this, for friendship and knowledge of what to expect with this disease. She is here for me to talk to 24/7 whether I'm happy or depressed. All I have to do is call her.

I have a young son, so he keeps me busy all the time. It’s good to look outside myself and have someone else to focus on. He’s also my reason to keep going. I want to be there for him.

Read more about John’s journey.