My goal is to offer some hope to all of you. This is my story.
In 2003 I had been undergoing enormous stress with my mother's health (who subsequently passed in Jan) and then 10 days later my mother in law was expected to die as well. I had been taking care of both of them under Hospice care.
I,at the time , was taking an antibiotic called Dynacin for some skin issues I was having as a result of turning "40". I was the healthiest I had been in my life, weighing less than high school and had been walking 5 miles 3x a week and working out with weights.
Anyway, on May 9th 2003 my life changed. The night before I had noticed shortness of breath walking to my mailbox and some funny "purple specs" on my arms and legs. The next morning I was bleeding from alot of different places. We rushed to the emergency room where they ran a CBC and found I had basically no blood counts. I was put in ICU and given blood and platelets.
That afternoon they called in a Hemotologist who did my first BMB. The cellularity came back 5%.Unable to treat the Very Severe Aplastic Anemia that I was diagnosed with at the local hospital , they kept me there to support me until a decision could be made. I have one sister who lives 1200 miles away and they were sending her a kit to be tested for a bone marrow match. I was released on Fri to go home for the weekend and instructed to go to NIH on Monday for a Tuesday clinic appt to see if I fit into a clinical trial.
On Tues, NIH ran their own BMB and it came back the same , so Dr. Young would not let me leave and admitted me on the spot. As they would not put me on a plane with no White Cells to return home. We waited for my sisters results, which she was a complete match. I opted to try the ATG/Cyclosporine/Mycophenolate,first and then go from there.
On May 14th ,I was given my first dose of ATG.No real terrible side effects, a little flu like. I did develop pretty strange serum sickness that they had never seen,red rash,no itching,peeling hands and feet.The worst was a nosebleed that wouldnt quit. I received ALOT of platelets, As I just couldnt hold onto them,some red blood every few days. I was allowed to be up and about,laundry,cafeteria,walking around some which was nice.
Within 2 weeks my counts started to rise and on June 10th was released to go home with a suitcase full of cyclosporine,MMF,Magnesium,etc etc etc. They sent the Neupogin by express mail in a cooler. My husband would give me my shot since I couldn't do it to myself. I went to Pantamidine (to prevent pneumonia) treatments once a month and blood work every 3 days or so for a while. Back to Nih at 3mos,6mos,9mos and 1 year. Then 18 mos and once a year since.
Last July, Dr Young said I could have a year off and come back in 2!!Once returning home I never needed blood products or platelets again and have had basically normal counts ever since. My platelets stay around 245,000.
I am truly blessed and grateful to all those at NIH:the nurses,the Doctors,the fellows,and Dr. Neal Young, for if it was not for them , I would not be here today. I still have my sister as a backup plan, if for some reason I come out of remission and after this, I know I can endure through almost anything. My children,my husband and I believe two "angels" gave me the strength and will to make it through.It did take me ,probably almost a year ,to get my complete strength back.I think I am the only person on earth who can manage to have a month long hospital stay and GAIN weight but if thats my biggest complaint, I guess I'm doing okay.
I am EXTREMELY careful of any drug/substance or anything that enters my body. I walk regularly,exercise,went back to work and enjoy my life. I hope my story has helped in some small way and given some hope to all who read. Please feel free to email me at
JBSX19@aol.com.
Judi 46yoa female diagnosed VSAA May 2003 full remission