Aplastic Anemia/MDS?

[misscakes]

I'm new here So I'll just jump right in.

My doctor noticed some issues in a standard blood count earlier this year so he referred me to a hematologist. I was pregnant at the time. The doctor was concerned with my platelet counts which continued to drop. We tried steroids, b12 injections, iron infusions, to no avail. In May I got my first bone marrow biopsy. It showed 20-30% cellularity. In June I had a healthy baby girl along with 2 platelets transfusions bringing me to a total of 3 so far. My platelets continued to be crappy after her birth. In the past couple months, the rest of the blood counts on the cbc started to go down as well. My doctor then referred me to Emory in Atlanta for a second opinion...and a second bone marrow biopsy. That was October. This one showed a cellularity of 10%. My doctor and I discussed a bone marrow transplant (as well as with the specialist at Emory), but I was told that they didnt want to do one yet because I had small children and there wouldnt be anyone to take care of them while I was recovering (which is completely untrue!). So both my doctor here and the one in Atlanta told me that we are going to wait until my condition worsens to proceed with treatment. Just since my biopsy October 10th, my platelets have dropped 15 and are now at 23. Is it normal to wait until something gets worse when it's already this bad or should I seek other opinions? My bones hurt constantly and I'm too tired to do much. Can it get much worse without being an emergency?

[Hopeful]

Hi Misscakes,

Congratulations on the birth of your daughter. I wouldn't delay getting a second opinion from a doctor that specializes in bone marrow failure. What is your age and how are the rest of your counts? Do you have a diagnosis?

[Neil Cuadra]

Hi Misscakes. I'm not a hematologist but in my opinion your counts leave you in danger and you owe it to yourself and your family to get appropriate treatment, now not later. If there's a reason the doctors want to wait despite your low platelets, it's certainly not clear to me why.

If you can go out of state you might consider a consultation at the Mayo Clinic in Jacksonville (see Treatment Center Map). It's hard to beat the Mayo for expertise in both diseases.

I would also contact the Aplastic Anemia & MDS International Foundation to get detailed literature about both diseases and any other information or referrals they can give you.

[misscakes]

Hopeful,

Thanks! I am 25. The rest of my counts are horrible. I consulted a doctor last night through JustAnswer.com and he said that with my wbc where it is, waiting for treatment is "inviting disaster". RBC is low. Hemaglobin is around 8.9. Two biopsies later, they still havent given me an official diagnosis.

Neil,

Last night I requested an appointment at the Mayo clinic. Hopefully someone will get the ball rolling.

[Andrya D]

Hi there,

Welcome to my hell Just kidding. I was 25 weeks pregnant when I was diagnosed. I had over 60 platelet transfusions and probably near that for units of blood prior to getting my transplant. They did the watch and wait game while pregnant and thankfully no intervention was necessary. My doctor, who consulted with Dr. Neil Young at the NIH, told me it could take up to 3 months to find out if the condition would go away after pregnancy.

I had my transplant when my son was 4 months old. My condition went from being moderate aplastic anemia in Dec 2010 to severe aplastic anemia, MDS and PNH in July 2011. My doctors that did my transplant said this was likely due to waiting so long for the transplant.

It is HARD to recover with an infant. I have been living with my in-laws in order to be within 30 min of the hospital. I was suppose to have help from both of my in-laws, but they pretty much abandoned me half way to Day 100. I had to call my mom in to help, she lives 2.5 hours away. I still need help, but am managing. My advice is that you are going to need 24/7 help not just for you but for your baby as well. My experience is pretty well documented on my blog.

I'm so happy to hear that you and baby made it this far! Good luck and feel free to contact me if you need advice, want to talk about how difficult it is/was with a newborn, etc. My personal contact information is on my blog as well.