Where we are with AA (Aplastic Anemia)

After talking with Brian, a friend from work and my doctor in Canton, I decided to go ahead and keep the appointment today at Emory and schedule a consult with Northside Blood and Morrow next week.  In fact, as I was checking out at Emory today, Northside called.  My appointment with Northside is on Monday.

Today’s appointment at Emory was basically to tell me what I have, check my blood and put me on a ton of drugs.  Brian and I decided that if we felt the doctor was more personable today, we could always cancel the Northside appointment.  However, when the doctor entered the room and said, “how are you today” and I proceeded to actually tell him (heartburn, not feeling good, night sweats,etc) he just looked at me, went to his dry erase board and started teaching me and the fellow (remember, this is a teaching hospital) about aplasic anemia and outlining the drug treatment plan.  I know this doctor is brilliant.  I know he teaches other doctors.  I know he reads research. But really?  See the patient in front of you and see that she is a scared woman.  A mom.  A wife.  Someone who doesn’t feel good at that very moment.  Maybe the sick feelings I am having have nothing to do with aplastic anemia.  Listen, let me know you know I am scared.  Tell me you are sorry I don’t feel good and then say, “well, the good news is that those don’t sound associated with aplastic anemia and are probably due to poor diet yesterday and stress. Let me tell you what I can do for your aplastic anemia.”

So we hope to find that same brilliant doctor but compassionate person at Northside.

Medically, here is the update.

My platelets are still low.  7k this time. But he assured me that really anything under 10k,  the computer doesn’t really measure. I didn’t need a transfusion because he put me on a pill to help my platelets.  (really to help them weave together…remember my fabric post a few weeks ago…so they will clot better).  Why he didn’t do this last week I am not sure. My red blood is still low, obviously, but again he said that I could avoid another transfusion since I am starting drugs.  What he doesn’t know is that I only started the platelet drug and will wait to start the others after my appointment with Northside on Monday. However, the treatment plan is a number of drugs to lower my immune system, prevent viruses, prevent bacteria, promote cell growth and I will have to go get injections of a growth hormone for my red blood as well.  The plan is to put me on all these drugs, monitor me and see how I do.  If I respond, then I can avoid the 5 day hospital stay with injections that would come around Christmas.  If I don’t respond to drugs or IV therapy, then the next step would be bone marrow transplant.

I have been diagnosed with non severe aplastic anemia.   This is the best kind to have if you have to have one.  He also said that it was treatable and expected a good outcome.  Hopefully, my body will respond to the drugs and I won’t have too many side affects.  Brian has said that the drug therapy may be tricky and that it won’t be an easy road, necessarily.  But I think my car has the right tires, and I certainly have OnStar with the support of my husband, kids, family, friends, coworkers and health care facilities.

The house is quiet and cool right now.  I can hear the birds and rain through my open windows.  Brian is working from home in the basement right now.  Nana (Leigh Ann) has the kids at the bounce house and then is taking them out to lunch.  I feel a little spoiled.  We have several appointments on the horizon (Monday at Northside, Tuesday to get blood work and shots, another at Emory on Friday which may be canceled, one in April with my ob/gyn to discuss options and I am sure several more in between now and then.)  Thanks for all the support.  We will keep you updated.

And thanks for stopping by Our Berry Vine.