Got All 3 - SAA, MDS and PNH

[Andrya D]

Hi All,

I would like to share my story, and hopefully find someone who can relate. In August 2010, I found out I was pregnant. I was very tired, but was always told that was normal. I was working for an endocrinologist (Diabetes doctor) at the time. Everyone there kept telling me how pale/gray I looked, but the doctors didn't seem to think it was a big deal. My legs started to get petechiae (at the time I didn't know that and the PA at work said it looked like a pregnancy rash, in which there was no treatment).

On December 24, 2010, our car got stolen. In it was all of our personal belongings, including my purse, my husbands wallet, our cell phones, cameras. We were at the beach and didn't want to have to babysit this stuff. Anyway, my husband needed to get a new phone right away, so the following Monday, we headed downtown in our other car to get a new phone. Well, then we were rearended. Per hospital protocol, they wanted me to come in for 4 hours of observation because I was 6 months pregnant. That is when the news came. My platelets were 25000, my hemoglobin was 8.1, my WBC were normal but low for a pregnant person, my RBC were low. They wanted to do an immediate transfusion, but decided to wait until I saw a hematologist. The next day, we saw the hematologist and confirmed that I had aplastic anemia, but the biopsy would tell us for sure. The biopsy came back confirming mild aplastic anemia. I soon progressed to requiring blood and platelet transfusions, eventually needed 2 platelet transfusions a week and 2 units of blood per week.

Thankfully, I delivered my son in March without any complications. 3 days after leaving the hospital, I was back in again for neutropenic fevers, my ANC had dropped to 290. My doctor was hopeful that the AA would go away after I delivered, but it didn't. At this point, they told me my only treatment option was a bone marrow transplant. My brother was an exact 8/8 match thank goodness! So I had to move to Kansas City to get treatment. My family and my husband's family are in Missouri, so I thought going to KU to get my treatment was my best option, since I and my son would require caregivers.

So of course, KU had to repeat all of the testing. It was then that I found out my AA had progressed to MDS and PNH as well. I was treated with Cytoxan, Busulfan, rabbit ATG and Methotrexate. My transplant occurred on 7/27/2011. I am at Day 92 and doing very well. We have had a couple of scares with GVHD, but have not been formally diagnosed with it. My counts have been pretty study, though last week everything had dropped. Usually it is just 1 or 2 of the counts that will drop slightly then come back up the next week. Other than that, I have not been sick or had any other complications.

I have a blog that I write about my experiences at www.andrya-survivingaplasticanemia.blogspot.com if you want to read or learn more about me.

[Neil Cuadra]

Andrya,

I read your blog. I guess it's really your and Ryan's blog, since he took over for you in the thick of things.

One of the first questions that came to my mind was whether you really had AA and then MDS, or if it was MDS all along and simply couldn't be diagnosed at first. Maybe your pregnancy didn't cause an immune reaction but simply revealed something that was already wrong.

In many ways your story echoes those of other patients: a scary diagnosis, transfusions, enduring tests and making sense of test results, the ups and downs of good days and bad days, the ways your family has pitched in to help, the transplant process, getting discouraged, and seeing the light at the end of the tunnel.

But you also have your own unique twist on these experiences: the way you ended up being diagnosed(!), having such a young son, the headaches (that sounded especially awful) and other side effects, and being a Navy wife. You must really be looking forward to Day +100 and the new freedom you'll have.

If I can presume to speak for other patients, I'd like to thank you for sharing your story here and publishing your blog. It probably gives you an outlet and a way to keep family and friends informed, but it also gives something concrete to other patients who are facing what you've been through: first-hand details. It's hard not to start rooting for other people once you've read about their struggles, and it helps us all feel connected and better informed about what patient really face with these diseases.

[mausmish]

Hi Andrya,

Welcome to the forums. I replied on the other thread about Hopkins and sent you an email.

I just read your blog and linked it from mine. You are an amazing woman!

Karen