Another Email from Marla, AA survivor & Her Story

Hello Karen:

I was transfusion dependent for 19 months. I got off the plt transfusions around 17 months. As far as how long it took me to see changes in my counts after changing my diet, I would say about a month or so after AA diagnosis, I was starting to learn to read the CBCs better, and that's when I noticed the first changes (improvements) were with the differentials of my white count. I had zip neutrophils early on, and while the total WBC remained low fro months, I could clearly see the differentials righting themselves even though I continued on to be transfusion dependent for months. At diagnosis my plt count was 1K. I noticed about a year later that my plts started to hold at around 4K, then a few months later 5K, then 8K. That is the point where I stopped taking plt transfusions. Then slowly month after month it started to continue to rise into the safer ranges. At around 19 months after diagnosis, my reds started to hoover in the 7 hbg, and that's where I stopped taking red transfusions. Then when I added meats back into my diet, the reds really jumped up quickly.

The similarities to me and Akshay is that both of us did not take the standard immunosuppressant therapies, and it took us about the same length of time to recover our counts. The differences is that he had issues with low calcium and fragile bones. I can't say exactly what his diet consisted of, as we never really discussed that too much. And I know he did take some homeopathy, which I did not. And I think he didn't start to juice until later in his recovery. I'm sure his parents would be happy to share more information with you regarding his treatment.
Other differences is that Akshay was diagnosed with some sort of hepatitis before he developed AA. I was not. His hep cause was unknown. Also I have had a life-long issue with skin problems for which I took medications and likely weakened my immune system and adrenals, etc. I don't think Akshay had that problem. Plus I am much older than he is. I think he's about 12 now? or so, and I am now 45. I was 34 at diagnosis. My last transfusion was in 2001 July 6.

Okay, hope that helps answer your questions! Thanks for sharing more info about yourself. I hope you keep in touch and if there is any more info that I can help you with, feel free to ask! I think my story on my webpage gives more details of what I went through, including the heavy female bleeding. (again, something Akshay didn't have to deal with).

All the best! Take care!
Marla

Marla's Story from her website:
 
How my aplastic anemia (AA) began or when it began remains unknown. However, it made its presence known to me in October of 1999. My very first symptoms appeared before I knew I was in trouble. It happened on a Monday while I was putting a file away at work. I sliced my finger on a file and put a bandage on the finger. But, I noticed about an hour or so later that the bandage on my finger was pretty drenched with blood. I thought that was odd because I had cuts like that before and never bled that much. I even made a joke about it saying that my finger looked like it was going to explode so, "stand back!" That same day, I developed a bruise on my left leg. By Wednesday, I woke up with these little red spots all over my legs, hands, and feet. (Which I later learned were petechia marks--bleeding under the skin.) I also noticed more bruising which looked unusual. Thursday night, I noticed unusual gum bleeding after I brushed my teeth. On Friday morning, the gum bleeding was more intense. While I was driving to work, I tasted a saltiness in my mouth. I looked in my rear view mirror at my teeth only to shock myself with all the blood I saw in my mouth. Still, it was payday and Friday, so on I continued and worked the full day. The next morning was Saturday. I woke up to yet another surprise of about 10 bruises on my legs, more bruises on my feet, arms, and hands. Alarmed, I woke my husband up to tell him to look at me, and he said as we were speaking, "You're getting another one on your hand." Bruises were developing on my body right before our eyes. Okay, now I was freaked out.

I ended up in ER that day. A blood test had shown that my platelets were at 1,000. Normal platelet levels are between 150,000-400,000. Someone had stolen mine!! I was admitted to the hospital (thinking that they could help me find my platelets), and the next day I had a bone marrow biopsy and aspiration. ("Wowsy". . .That's about all you probably want to hear about that.) I stayed in the hospital for a week, and during that time, I had steroids, my first platelet transfusion, a diagnosis of a prolapsed mitral valve (heart valve problem) and aplastic anemia. Now things were starting to overwhelm me, and I wouldn't consent to any specific treatment, so I was told to go home and come in to the doctor's office in a couple days.

A complete blood count (CBC) taken at the doctor's office indicated that my blood levels were continuing to drop. Before the week ended, I was back in ER with an infection in my gums and on my right arm where the IV site was of my second platelet transfusion. This time, my hemoglobin was 5.0 (normal range for a woman is 12-16), white count was .5 (normal range is 4-11), ANC of 0, and platelets, after a transfusion, was 5,000. Once again I was admitted to the hospital. During this stay, I got the pleasure of receiving IV antibiotics, my first red blood cell transfusion with chills, more platelet transfusions with hives, hormones to try to stop my menstrual cycle which had already begun, a not so lovely PICC line, and was told that I was already refractory (not responding) to platelets. I went home from this stay with Provera (hormone to prevent menstrual cycle) and a prescription for a three months supply of Ciproflaxin aka Cipro (antibiotic).

I still did not want conventional medical treatment for my AA, so for about three months, I had supportive care wherein I accepted red blood and platelet transfusions via my PICC line. I was getting platelet transfusions almost every other day, and red cell transfusions almost every week. But, alas, my PICC line site became infected and had to be removed. I found myself once again looking out the window of a hospital room while I laid on the hospital bed with more IV antibiotics pumping through my veins, and my arm where a PICC line once resided, wrapped in a heating pad. I was running a fever that reached 106 degrees because of the infection in my arm. I had develop cellulitis on that arm which made my arm twice its normal size and very painful. My arm had developed a huge rash, was peeling, hot to the touch, hard, and inflamed. I was released from the hospital after a week and sent home with IV antibiotics which was to be administered to me for another week with a home health service. After a week of the home IV antibiotic, I was to take another week of oral antibiotic, Doxycycline.

I continued for another five months with weekly transfusions of both platelets and red cells until my menstrual cycle got the fine idea of trying to allow my body to drain it's blood supply via my uterus. So, I ended up in ER and was admitted to the hospital again where I stayed a few days to get my menstrual cycle under control and my body tanked up with more blood so I would resemble a live person. This time, I was sent home with birth control pills, Demulin, to control my female cycle. I was not to take the placebos so that I wouldn't have a cycle at all. Well, things didn't work out as planned. I started my menstrual cycle again anyway, but this time it was even heavier than before and lasted for about a month! Of course my transfusion rate increased at this time because the blood was being pumped into my veins while at the same time just dropping out through my period. (I guess my exit door had been left wide open.) After going through this nonsense for about a month, I had a transfusion on a Friday, and by Monday, I had to be taken to the hospital by ambulance. My hemoglobin level had dropped down to 3.7. (I know others have been able to walk into the hospital with this level, but I guess with all this fast yo-yoing of blood in-blood out business, I could not get up without starting to black out. I just wanted to be left alone to die by then, but my family wouldn't have it.) At this point, I didn't care anymore. I was so tired. I accepted to have an endometrial ablation done to stop the bleeding and had more transfusions, but that was all. The endometrial ablation was done, I got tanked up again with blood, and I was sent home again to continue my exciting life of regular visits to the doctor for CBC's and visits to the Procedure Center for transfusions.

Eleven months later on July 6, 2001, after using 89 units of platelets and 86 units of red cells, I received my last transfusion. (Although I didn't know it at the time.) After a total of 19 months, my hemoglobin started to hover in the 7's, and my platelets remained above 10K. I was very functional and asymptomatic at this level, so my poor little veins finally got the long needed rest it deserved. Finally! Progress!

She continues with CBC (blood counts) and the ups and downs she went through.   However, as of now, she hasn't had a transfusion in over 8 years.  She is, in my humble opinion, a brave and remarkable woman.

Some of you have requested My Story.   It's coming.