My life with AA

[mscrzy1]

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. 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?

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? 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!!!

[Lisa Z]

Your story is great for anyone to read; recently diagnosed or previously diagnosed. You say it all so perfectly! I wish you all the best and hope that there is some "other" reason for your low counts.

[Neil Cuadra]

Angie,

Thanks so much for telling your story... at least the story so far.

So much of what you say will ring true with other patients: How hard it is to recognize the disease. How we attribute the symptoms to various other causes. Ending up in the emergency room. Hearing a lot of new words about a disease you've never heard of. The lack of treatment choices. The medical tests and procedures you have to go though, and all of the ups and downs.

You have a very positive attitude and I can't help thinking that's a big part of your success in battling AA. Your spirit must have been sorely tested as the months went by with no improvement after ATG. It's hard to be patient when your health is at risk and even the best doctors can't offer explanations or certainty.

That you recovered, got married, and had two girls is simply wonderful. You've made me smile. And it's such a contrast to the low points before. Having a normal life is a huge achievement when it's such a struggle to get there.

Whatever's going on now, your strength and spirit are mighty weapons and I have a feeling that you're going to continue to be on the winning side. Thanks for being an inspiration to other patients.

[mscrzy1]

Thank you, Lisa and Neil.

I do try to be positive most times, but I do remember faltering at times. A good cry is necessary every once in a while.

I will say that the best gift I received when I was hospitalized one of the many times was a book of Far Side cartoons. I like to laugh and I found if I could make jokes or read jokes out loud, it seemed to make things easier for everyone, myself included.

[mynap]

Wow, Angie I read this and it describes me at university so well. I used to bicycle-commute. It was a disaster, because of the fatigue; crippling. I persisted because I thought I just needed to be fitter, didn't work. Had previously illness in my late teens that had the doctors scratching their heads over my bloodwork. Chronically high white cell counts. The excercise intolerance has persisted plus various extreme "infections". More head-scratching by docs, until now 45 and something very weird health-wise going on. Really, it will be a relief to know what is going on; there has mostly always been a problem........A mynap.........

hope you are doing ok now, haven't read all your posts yet....

The disease; It's been great for my compassion for us humans. No name, but has taught me a lot....best wishes.

[mscrzy1]

Latest update:

My counts continue to drop. My bone marrow biopsy didn't really show me to be aplastic again, so my hematologist has sent me to a rheumatologist thinking that I have an autoimmune disorder causing this. After review of everything, my rheumatologist is thinking that it may be Evans Syndrome, which is described as:

a very rare autoimmune disorder in which the body makes antibodies that destroy the red blood cells, platelets and white blood cells. Affected individuals usually experience thrombocytopenia (too few platelets) and Coombs' positive hemolytic anemia (premature destruction of red blood cells). People with Evans syndrome may have low levels of all three types of blood cells at one time, or may only have problems with one or two of them. The exact cause of this condition is unknown.

per http://rarediseases.info.nih.gov/GAR..._syndrome.aspx

My rheumatologist was incredibly surprised that I wasn't referred previously when I was fighting AA. The labs are sent and I'm awaiting the results. I'm anxious. I was excited thinking that it was something easy to treat and deal with until doing reading on it and realizing that it's almost as bad as AA. Now I sit here not sure which is the lesser of two evils.....never thought I'd actually be in a position of possibly hoping for AA instead of something else.

Either way, I plan to use my typical treatment plan of laughter.

ETA: wbc 2.6, hemo 10.3, plat 60

[mscrzy1]

Ugh! It's like my crazy, run-around, trying to find diagnosis life here! Had another appointment with the rheumatologist today with the results of my tests. I tested positive for ANA indicators proving that I have some autoimmune disorder going on. I originally tested negative for my hemotologist, but my rheumatologist said that most general laboratories use a basic test that is not very dependable. She is very specific with which lab she uses so that explains why my original ANA tests showed up negative, but hers showed up positive. So, now my rheumatologist is leaning towards lupus with evan's syndrome and reynaulds as my indicators. She is even thinking that my previous bout with AA could have been an indicator of lupus at the time. The lupus was attacking my bone marrow then. Now it is attacking my blood cells. Thankfully, if it is indeed lupus, I should be able to take medication to rectify most of it. I'm so relieved and hoping that this is definitely the issue at hand. She refuses to follow the "wait and see" that most hemotologists, including mine, like to follow because she says that if it is indeed lupus, she needs to medicate now and not later when I'm really bad off. Currently, I'm on a very mild medication and will have another cbc run in a month to see if my counts are stabilized. If they are, she said that it's a sign that the meds are working. If not, we'll need a stronger medication.

I don't know if some of you remember my questioning if my AA could possibly have been caused by lupus, but it seems I may, possibly (hopefully) have been right!!!! I'll take popping a pill the rest of my life to dealing with AA again anyday!!! Yay! I'm floating on air today, feeling good. This would also explain my total fatigue when my hemoglobin is sitting at a decent level of 10.3. She said that lupus would cause that. It also could explain my fainting spells (airplane ride) as it can affect my heart. So happy that we may be getting to the bottom of it all!

[mscrzy1]

I've been taking medication for lupus now for one month and just had my cbc run and my counts are............coming up!! The cause of my aplastic anemia all those years ago and the cause of my problems now seems to be lupus. I will have another cbc in one month and another appt. with my rhuematologist for definite confirmation. For anyone questioning if that could be the cause of your AA, I will tell you that my test run by my hematologist for lupus was negative. I had to go to a rhuematologist and even then I only showed one of the 4 indicators for lupus on my blood test. She explained that her field of expertise is never black and white. This was a shot in the dark that turned out to be dead on. I urge anyone who is battling AA to get tested for lupus as well. Lupus is managable with medication, but can be life-threatening without. Amongst other things, it will cause kidney failure if not treated. I will be getting a kidney panel run on me since it was so long ago that I originally battled my AA.

[Neil Cuadra]

Angie,

It may be a little soon to judge (was this your one and only CBC since you started taking the new medicine?) but let's hope you keep having this very positive side effect!

[mscrzy1]

Thanks, Neil! I'm happy to report that I've had another cbc run this week and now my hemoglobin, WBC, RBC are all up and my platelets are about the same. Even my hematologist is starting to get on board with my rheumy in the thoughts that lupus could have been and may still be my culprit. I do hope we continue to see this trend with my counts.