My Aplastic Anemia Story

The story that has shaped my life...

Our local paper had an article about Aplastic Anemia when I was diagnosed and scheduled to go in for treatment.
I was diagnosed with Aplastic Anemia in 1997. [Aplastic Anemia is a non-contagious disease that occurs when the bone marrow stops making enough healthy blood cells for the body’s needs.] I am now in complete remission, and I'm pretty confident it won't come back to challenge me -- because it knows it won't win -- it has made me too strong.

Aplastic Anemia has shaped my life, and I am now constantly striving for new adventure, and I don't disregard any new idea that pops into my crazy little head -- I'm willing to give it a shot. Because, well, why the heck not!? We've got this one life, might as well use it to the fullest!

"YOU MUST BE MISTAKEN..." :: As I think back to high school, I remember a few things that may have been early signs of Aplastic Anemia, but I had no idea at the time. I was tired a lot, but so was everyone else my age. I was 17, and I was up late doing homework, spending weekends with friends, and not getting much sleep, so my fatigue seemed normal. I also remember being turned down to donate blood my senior year because my red blood count was too low – they informed me that I was anemic and that I should start taking iron supplements. These may have been symptoms of a disease I didn’t know I had yet, and they may not have. Truth is, I don’t remember ever having “symptoms”…

After high school I went on to college at the University of Wisconsin – Stevens Point, where I majored in art with an emphasis in graphic design. I remember visiting the school clinic for a checkup, and the nurse took a finger-prick blood test. I was soon called back in for two more tests, both of which I assumed were standard procedures.

Then on one normal, routine day, I sat in line at the clinic to pick up a prescription. A doctor walked up behind me and asked, “Are you Robin Laatsch?” I responded with a “yes,” and he proceeded to tell me that he needed to speak to me in his office. I remember feeling like I was in school, being asked to report to the principal's office! I said to him, "Oh, you must be mistaken. I'm just here to get a prescription." But he insisted, so I got up and followed him to his office. On his desk was the Physician’s Desk Reference (a huge, intimidating book), and it was opened to a particular page.

THE DIAGNOSIS :: He went on to tell me that from my last few blood tests, he’d noticed a pattern. My blood counts were steadily dropping. He pointed to a page in the book on his desk and said, “I think this might be Aplastic Anemia, and you need to see a specialist immediately.” I don’t remember being scared or freaked out or anything. I just remember thinking, “okay, I’ll just do what this crazy doctor-guy says I should.” Later on I realized that he may have saved my life. If he hadn’t noticed the pattern, I don’t know how I would’ve found out or what may have happened.

So I called my parents right from his office phone and told them I needed to see a specialist. It didn’t feel like a big deal to me at the time, so I was probably pretty calm. We set up an appointment with a hematologist at Marshfield Clinic in Marshfield, Wisconsin.

VISITING THE HEMATOLOGIST :: The hematologist in Marshfield looked at my low blood counts and requested a bone marrow biopsy right away. They gave me some local anesthetic, then drilled into the back of my pelvic bone and took a small sample to test. The test confirmed that I had Aplastic Anemia.

We were told that sometimes this disease can turn itself around when the patient is younger (I was 18), so we were instructed to go home and continue our normal daily lives. I was to have my blood drawn often and have the nurse send the results directly to Marshfield for them to keep an eye on them. After six months of this routine, I had a follow-up appointment in Marshfield. We were introduced to a new doctor, Dr. Lawrence Clouse. His honesty and straightforwardness connected us immediately. He brought us into a private conference room and told us straight out that the situation had worsened. My counts were so low I was going to need transfusions—and I needed treatment immediately.

We went over a few different options, and Dr. Clouse set us up with a visit to MAYO clinic in Minnesota for a tour of their bone marrow transplant facilities and to get on the bone marrow donor list. My parents called my brother immediately and he was tested to see if he could be a direct sibling donor, but unfortunately he wasn’t a match. So I was put on the donor list. A bone marrow transplant is the closest thing to a cure for Aplastic Anemia, but it doesn’t work for everyone. These transplants are also very dangerous, and the odds of surviving can sometimes not be very good — especially if the patient doesn’t have a related bone marrow match. I did not have a related match, so the percentage I was given for survival with a transplant was not so good. We opted to try an immunosuppresive treatment instead.

In the hospital receiving blood tranfusions.

TREATMENT BEGINS :: So I was admitted into St. Joseph’s Hospital, which is connected to Marshfield Clinic, in July of 1998. I first had a Hickman catheter put in, which is basically a line that went directly to my heart so I could easily receive transfusions, my treatment, and easily have blood drawn without constantly having to be poked with a needle or given an IV. I underwent my 4-day ATG treatment, and besides a small allergic reaction and a day of uncomfortable hives, I flew through the treatment fairly well. Following the ATG, I was given some pretty heavy-duty drugs (Cyclosporine and Prednisone), and I remember having to take a cupful of pills each day.

A BRUSH WITH DEATH :: I ended up suffering from some common side effects from the medications I was taking, and had to rush to Marshfield on a whim every now and then to receive blood transfusions. The biggest event throughout all of this was when I awoke my dad because I was having a seizure. We found out later that seizures are a rare side effect to the medications I was taking, and I unfortunately experienced this scary reaction.

I remember that night – I was sleeping in an upper bunk in my bedroom, and I was feeling very restless and uncomfortable, so I got down in the middle of the night to lay on the living room couch. Early that morning, my parents woke up to a weird sound, and found me on the couch seizing. They say my lips were turning blue, and I wasn’t breathing, and when my dad tried to hold me still, I threw him across the room with my thrashing. My friend Tami stayed with me this entire summer, and she got up and called her mother, who lived about 2 miles down the road, and happened to be a First Responder. She was there within minutes, and she is the first thing I remember from that day. She had an oxygen mask on my face and was telling me calmly that I had suffered some seizures. Meanwhile, my mom was on hold with 911 to get an ambulance out to our house, which was 12 miles out of town. But eventually one came out and rushed me up to Park Falls Hospital. I only remember being conscious for two or three very short periods that day. My hematologist from Marshfield was contacted, and I was immediately flown via Life Flight helicopter to St. Joseph’s hospital where I was placed in the ICU.

In the hospital on a "not so good" day.

 The point in which I truly realized how close I was to death that day, was about a year later when my parents told me that they were asked if they’d like to have a Catholic priest come in and read my last rites in case I didn’t pull through, and they agreed. I can’t imagine what it must have felt like being a parent and having last rites read to your daughter. When I heard this story, it was a strong reminder of how serious this illness is—and that it could have taken my life that day.

The first thing I remember is waking up with headaches so bad that I wanted someone to take a hammer to my head. I remember being asked questions, like, “Who is the president?” I remember answering wrong. I remember being asked what my birthday was, and responding with, “Just give me a sec. I know this!” But it just didn’t come to me. It was scary – I lost some of my memory temporarily, but fortunately, I was told by the neurologist that I completely recovered from the seizures. I’m not sure if it’s directly connected, but I still find every now and then that there are things I should remember but just can’t.

COMPLETE REMISSION :: Seven years later I was told I was in complete remission by my hematologist. I think when I heard those words, I finally realized the seriousness of what I’d been through. Complete remission meant that I had a life-threatening disease and beat it. Because of my family and friends and many others who didn’t even know me — and all their support, I beat it before I even knew what hit me. I’m lucky. There’s no other way to put it. Because of support, humor, and prayers, I am here today. It is important for me to remember that ATG is not a cure; it is only a treatment. So even though the doctors have told me I’m in complete remission, there is a chance I could relapse any time. I have fully convinced myself that I've kicked it for good, but it's still a "monster in my closet" as I've heard another patient once put it. But all I can do is look forward to the future with a huge sense of optimism. Not just for myself, but for the many other people who share this and other Bone Marrow diseases.

Thank you so much for your interest, and thank you for reading my story. I am a very open person, and I enjoy sharing my experiences, so any question you might have, I will do my best to answer it.

2 comments:

Kevin McNamara said...
This comment has been removed by the author.
Kevin McNamara said...

Dear Robbin,

I just came across your blog yesterday. What an inspiration you are to me!

I was diagnosed with severe aplastic anemia 15 months ago, and also received ATG. I am still fighting it, currently in partial remission. But like you, I love the outdoors and I love to backpack. And I have the energy to do that again (though I do get tired).

When I see it took 7 years for you to reach complete remission, it reminds me what a long journey this fight against aplastic anemia is. And your marvelous recovery gives me hope that I will improve further.

I have shared a link to your blog with an online support group I am a member of. I'm sure many others will also find your story inspiring:

http://forums.marrowforums.org/showthread.php?t=3603

Thank you so much for creating this blog! I wish you and your husband the best on your adventures together. Keep on hiking!