My life changed almost overnight
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
Hi from Dot, Kert's wife
Wanted you to know that I really enjoyed your story. That is a success story for sure. Hope you continue with good health for every. The Key family
Thank you for encouraging message.
Thanks for your reply to my post last week. Your personal story is certainly an encouragement to us all and I will keep in mind your suggestion to look at NIH for acceptance to one of their clinical trial programs.
I am not big on hospitals though and get really depressed whenever I am inside one. The problem is that the treatments take so long - you must surely have had your patience stretched to the limit when you started your treatment. I couldn't even stand the sight of a needle before I got sick and then before you know it one is having to inject oneself!
Anyway it is nice to get confirmation that the disease is treatable and that my symptoms aren't unique.
Take care of yourself and enjoy your family.
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