Maggie Nicholson--My Story--Aplastic Anemia I was in Cancun, Mexico with five wonderful women, but wasn’t really having a great time.Climbing up two flights of stairs to our room was difficult and my energy was low.Less than a year before I had climbed to a glacial formation in the mountains of New Zealand. Now, I could barely keep up with my friends on a leisurely vacation. When I returned home from the trip, I had a regularly scheduled visit with my hematologist.Yes, I already was seeing a specialist in blood problems.I had known for over 10 years that my blood counts were lower than normal, but the counts never fell dangerously low.So the doctors had adopted a wait and see approach.Unfortunately over the next few months the low blood count problem developed into a severe life-threatening condition. The blood is made up of three parts, the red blood cells, white blood cells and platelets.My counts in all three lines were falling.The red blood cells (hemoglobin) carry oxygen around in the body.The low count of the rbc’s was causing my fatigue and lack of energy.The platelets were low and showed up on my body as bruises.The low white count was making me susceptible to illness.In fact that December my husband and I ate dinner at a restaurant, and he got an upset stomach that evening, while I got sick for three days from the same food. In the new year of 2006, I started going to see specialists to get the diagnostic bone marrow biopsy and opinions on what I should do.Originally, it was suspected I had a bone marrow disease known as MDS, but after a bone marrow biopsy at Johns Hopkins Hospital, it was decided I had an even rarer bone marrow disorder known as aplastic anemia.This was confirmed by another Doctor at Hershey Medical Center where I went for a second opinion. Doctors at the two hospitals had different treatment options that they wanted me to try.Hershey was offering the standard treatment which may work for a while, but then patients often relapse.Johns Hopkins was offering a treatment that may be more of a cure, but is harsher in the initial dose of chemotherapy.My husband and I discussed the options, visited both doctors two times, and then made the decision to go to Johns Hopkins.We felt that there was a better chance of a complete cure without the need to be on drugs for the rest of my life. In the meantime, while researching the condition and my options, I had started to need red blood cell transfusions in order to keep my hemoglobin level high enough to function in my daily life.I also had to have several platelet transfusions, specifically before the bone marrow biopsies as this is an invasive procedure that can cause bleeding.Generally doctors will not perform a procedure when the platelets are below 50,000 and mine were. After being on transfusions through the months of February, March and April, I was ready to move forward with a treatment.In May 2006, I took a leave from my job and moved to Baltimore for several months.The first day I was there, I had a Hickman catheter inserted into my chest.This is a central venous line that allows drugs and blood products to be given.Once you have this in, there is no need to be stuck with a needle each time you give or receive blood or chemotherapy.That same day, I received my first dose of cytoxin.I received a high dose of this drug for four days in a row in order to kill all the stem cells in my body.The idea is that the stem cells will reboot and come back working correctly. I stayed in the hospital for four days and then was released to outpatient status.I was required to live nearby and return every day for blood tests and transfusions as needed.During the stay in Baltimore, I was required to have a caregiver staying with me to make sure I was taken care of.Fortunately, I have a large and generous family who took turns acting as my caregiver.First my daughter Sara came and took care of me for two weeks.I realized during that time how mature and thoughtful she had become.She was a whiz at organizing what medicines to take and charting it all out.After she had to leave to go back to her job, I had three sisters who came for one week each to be with me.It was a wonderful experience to be able to spend that time with them. Then after those five weeks, in mid June, my husband who is a school teacher was able to come be my caregiver for the rest of the time. During my recover time at Johns Hopkins, I was taking neupogen to build up my white count.In order to be discharged to go home the absolute neutrophil count has to make it up to 1.0.Until then the body is too susceptible to germs causing illness.Finally in mid July I made it to the magic number and was allowed to come home. Once I made it home to the State College area, I had a lot of little difficulties to overcome, just to be able to continue staying home.At first I had to get my blood counts taken at least twice a week and with Dr. Wolfe at Geisinger had to figure out when to get transfusions.The Hickman catheter was still in and needed daily flushing and bandages changed.This I could do myself, but had to find a source for the needed supplies.With the help of a nurse at my insurance company, I finally found a supplier for the IV supplies.With my doctor and Mount Nittany Medical Center MTU Department we have come up with a good, efficient way to get my transfusions. My original idea was to go back to my job after treatment, but was unable to put in the hours when I returned home, as my body still needed more recovery time. Now it has been almost two years since I took the treatment.Unfortunately, I have not seen the results I hoped for.My platelets and red blood cells do not seem to be working at all.I get a platelet transfusion about once a week and red blood cell transfusion about every two to three weeks.My white count is holding it’s own now, low, but not dangerously so. I can continue to live like this and wait and see if my counts will improve over time.Living like this, is actually pretty good and I don’t want to complain about it.Another option is to look into getting a bone marrow transplant.One thing I will not do is give up.I still have lots of hope and plans for the future. To follow my ongoing story, you can visit my own website that I update about once a week. Janet Bowman was one of the founders of the Cancer Survivors’ Association and the reason I am involved in it now.She was one of the most generous and lively people I know and an inspiration to me to reach out and help others.Now working with this group gives me the chance to use my skills and feel like I’m making a difference. P.S. Since I originally wrote this story, I have undergone a bone marrow transplant in November 2008. All indications are that it is a success. Yea! I am currently in the first year after transplant, so have to still be on anti-rejection medication and watch very carefully to avoid colds and infections. The great news is my blood counts have all recovered to a normal level and I am looking forward to a complete cure and normal life.
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