mscrzy1
Wed Feb 23, 2011, 01:08 PM
I started my life with AA in 1996. I was a college student. I remember going to classes and falling asleep, drooling on my notes. :) I would go back to my apartment and crash until evening when I'd get up and go out with friends. I thought that my sleeping was because I was going out too much. Then, as it got worse, I thought it was because I was out of shape. I started getting headaches all the time. That was because I needed my eyes checked again. Ya, maybe my prescription was wrong. Then, I started completely skipping class just to stay home to sleep. When the new year came around, I decided that was enough. I was going to whip my butt back into shape! I went to the gym and started to run the track. I passed out cold after 1/2 a lap.:confused: I went home and called my mom asking her to schedule me for an appointment with our family doctor. I told her that I must have low blood pressure.
I went to the dr. on my next trip to my hometown. I explained to him what was happening. He immediately sent me to get bloodwork. When the results came in, he told me to call my parents to come and get me. I was to immediately go home to bed and he would call them when we got home. When he called, he told them my blood results and insisted I go immediately to a St. Louis or Springfield ER. And, so it began. I was admitted, blood work done, bone marrow biopsy performed and diagnosis given. I had aplastic anemia. What? What in the world is that?:confused:
Then my new life of blood transfusions, platlets infusions and epogin shots began. My veins collapsed. I needed a central line. My central line got infected, I needed admitted to the ER. Congestive heart failure. No bone marrow matches. Blood counts dropping. <5% cellularity? What? What's that?:confused: ATG. ATG? Horse serum? Huh? Make a visit to NIH to meet Dr. Young. No experiemental treatment that I'm a good candidate for. Must do the ATG. There's no time. It must be done. There's no other option. March 1996 - ATG done.
I was on cyclosporine (skunk pills) for five months. A call was put in to NIH to ask Dr. Young for advice because my counts weren't showing any improvement. It was recommeded that we continue the taper. At six months, I was off cyclosporine. My counts had no sign of any improvement at all. I continued on supportive care (blood, platelets, etc) for almost an entire year when slowly my counts started to improve. Little by little they were creeping up and up. On August 1997, I had my last blood transfusion. Hallelluhia!!!!!!! I was recovering!!!!!!!
Life continued. I still got my counts checked, but gradually the time between checks grew and grew. I was to a point of only getting checked once a year when I got married and my husband and I decided that we would like to look into possibly trying to have a baby. I got checked and spoke to my hematologist about the risks and asked his opinion. In June 2002, I delivered my first beautiful baby girl! :) And my counts kept rising!!! In July 2004, I delivered my second beautiful baby girl!:) And my counts kept rising!!!!
In 2006, I had the best counts I had ever had. Life was going well. Of couse, I had no idea my counts were at the best because I simply would get checked, see that they were in normal range, and go on with life. My counts were all normal for all those years.
On Oct. 2010, I had my first bloodwork come back abnormal on all three lines. My counts have gradually dropped a little bit at a time each time I go in. I graphed all my counts throughout my remission and saw how they all rose and rose until 2006 and then started dropping, dropping, dropping. I'm still dropping with no known cause. Maybe it's my body dropping to a "new normal" as my dr. says, unfortunately it is an unstable normal because I keep dropping. I'm praying they'll stop. My biopsies are all inconclusive.
No matter what is happening, ATG gave me 13 years of my life!! I got married. I had two beautiful children!! I lived life and enjoyed it!! If it is true that I'm seeing a possible relapse, I'm ready to take it on. I beat it once and I can do it again. :) I wanted to post my story to give AA patients hope. I got 13 years when at the time I was diagnosed they were very negative about my chances of survival and I delivered two beautiful children while in remission without a problem. :) There is hope. BUT, don't forget to get your cbc's done yearly. Don't skip them, but don't obsess about them.
Now, go out, and fight it!! You can beat it!! And most importantly, live life!!!!!! Don't let AA, MDS, or PNH hold you back!!! :D
I went to the dr. on my next trip to my hometown. I explained to him what was happening. He immediately sent me to get bloodwork. When the results came in, he told me to call my parents to come and get me. I was to immediately go home to bed and he would call them when we got home. When he called, he told them my blood results and insisted I go immediately to a St. Louis or Springfield ER. And, so it began. I was admitted, blood work done, bone marrow biopsy performed and diagnosis given. I had aplastic anemia. What? What in the world is that?:confused:
Then my new life of blood transfusions, platlets infusions and epogin shots began. My veins collapsed. I needed a central line. My central line got infected, I needed admitted to the ER. Congestive heart failure. No bone marrow matches. Blood counts dropping. <5% cellularity? What? What's that?:confused: ATG. ATG? Horse serum? Huh? Make a visit to NIH to meet Dr. Young. No experiemental treatment that I'm a good candidate for. Must do the ATG. There's no time. It must be done. There's no other option. March 1996 - ATG done.
I was on cyclosporine (skunk pills) for five months. A call was put in to NIH to ask Dr. Young for advice because my counts weren't showing any improvement. It was recommeded that we continue the taper. At six months, I was off cyclosporine. My counts had no sign of any improvement at all. I continued on supportive care (blood, platelets, etc) for almost an entire year when slowly my counts started to improve. Little by little they were creeping up and up. On August 1997, I had my last blood transfusion. Hallelluhia!!!!!!! I was recovering!!!!!!!
Life continued. I still got my counts checked, but gradually the time between checks grew and grew. I was to a point of only getting checked once a year when I got married and my husband and I decided that we would like to look into possibly trying to have a baby. I got checked and spoke to my hematologist about the risks and asked his opinion. In June 2002, I delivered my first beautiful baby girl! :) And my counts kept rising!!! In July 2004, I delivered my second beautiful baby girl!:) And my counts kept rising!!!!
In 2006, I had the best counts I had ever had. Life was going well. Of couse, I had no idea my counts were at the best because I simply would get checked, see that they were in normal range, and go on with life. My counts were all normal for all those years.
On Oct. 2010, I had my first bloodwork come back abnormal on all three lines. My counts have gradually dropped a little bit at a time each time I go in. I graphed all my counts throughout my remission and saw how they all rose and rose until 2006 and then started dropping, dropping, dropping. I'm still dropping with no known cause. Maybe it's my body dropping to a "new normal" as my dr. says, unfortunately it is an unstable normal because I keep dropping. I'm praying they'll stop. My biopsies are all inconclusive.
No matter what is happening, ATG gave me 13 years of my life!! I got married. I had two beautiful children!! I lived life and enjoyed it!! If it is true that I'm seeing a possible relapse, I'm ready to take it on. I beat it once and I can do it again. :) I wanted to post my story to give AA patients hope. I got 13 years when at the time I was diagnosed they were very negative about my chances of survival and I delivered two beautiful children while in remission without a problem. :) There is hope. BUT, don't forget to get your cbc's done yearly. Don't skip them, but don't obsess about them.
Now, go out, and fight it!! You can beat it!! And most importantly, live life!!!!!! Don't let AA, MDS, or PNH hold you back!!! :D