In Kim's own words:
I am a survivor of aplastic anemia. I am 43 years old - but was diagnosed when I was 24 and pregnant with my son, Tony. I had never been sick a day in my life and about five months into my pregnancy, I noticed my gums were starting to bleed and I was bruising easily. I was also very tired all the time and started to retain fluid. I went to the hospital a week later because my symptoms were worsening.
Blood work was done and retested because my counts were so low they weren’t sure if the results were in error. My platelets were 3,000. My hemoglobin was just about zero and my white cell count was two. I was immediately given blood transfusions and then platelets. I also had a bone marrow biopsy which then confirmed my diagnosis of severe aplastic anemia.
At first, the doctor thought my disease was pregnancy-related so I had an emergency Caesarean section the following day. The procedure was traumatic because they had to make sure my counts were high enough so that I wouldn’t bleed to death during the surgery. Because I was only five-and-a-half months pregnant, I was not sure if my baby was going to survive. I woke up three days later in the ICU with a respirator and lots of tubes in me. My son was two pounds, seven ounces. He did well and was home within two months.
I had a long recovery. The aplastic anemia did not go away after my son was born. They never found out how I got the disease – there was no known cause. I had so many transfusions of blood and platelets that I had a catheter put in my chest to make it easy. The veins in my arms were no longer viable. I was given cyclosporine and anti-thymoctye globulin (ATG) along with prednisone. The side effects of the medication were terrible. I was scheduled to have a bone marrow transplant. My brother was going to be my donor, but after further testing, we were no longer compatible because I’d had too many transfusions.
Next I was given a trial of danazol. My counts started to come up a little which was encouraging. However my platelets were always lagging behind. They even considered having my spleen taken out in order to “jump start” my platelet production. Before that could occur, for some reason, the danazol started to work and my counts increased and remained in the normal range.
I was followed by hematology specialists for 13 years. At my last appointment, I was given a clearance. I only had to come back as needed. Talk about being excited!
I continue to have some complications from the steroids but that is nothing compared to what I went through when my disease was in full force.
Tony is now 19 years old and you would never know he had been through anything. He is a part-time college student and also works part-time. He is currently taking general courses with plans to go into the medical field – either nursing or physician assistant studies. My son was very young when I was sick, so he doesn’t remember much of what I went through. We have talked about it. He admires my strength through all this and thanks me for being his mom.
Emotionally, I still have issues around his birthday. A lot of my bad memories come back. Certain smells bring me back to that time. I am fortunate that I am healthy today and that he is healthy as well. My hope is that my story encourages at least one person and that I can be a support for someone going through the same thing.
-Kim Lugiano – Swoyersville, PA
The Aplastic Anemia & MDS International Foundation (AA&MDSIF) created and maintains Stories of Hope as a service to those dealing with aplastic anemia, MDS, and PNH. Some of the stories on this site discuss medical treatment options patients have used; however, these stories are not intended as medical advice and should not be construed as such. AA&MDSIF recognizes that each patient, their treatment options, and the circumstances surrounding their bone marrow failure disease, is unique.
Inclusion of information in a Story of Hope does not constitute an endorsement or recommendation by AA&MDSIF of any medical care provider, treatment practice, medication, product, or manufacturer. Patients are encouraged to seek medical advice from a qualified hematologist/oncologist and to discuss their individual questions and concerns with their doctor.
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