I’m sorry for the delay in writing this post, but as you’ll see, it’s been a very crazy 2 weeks. One day is good; the next is bad. Luckily, I have my BFF Angela here to help me through it all. (Coach Angela)
Today is a dreary day; a perfect day to be stuck inside while it rains. For some people….
But I’ve been inside for 2 months (except when I ran on the tarmac between planes in my hospital gown). Just another day behind the computer and iPad for me.
So here’s a recap of where we are now:
|Jan 4||Symptoms first noticed|
|Jan 20||Severe AA diagnosis confirmed|
|Feb 4||Admitted to NIH for Horse ATG|
|Feb 25||D/C from NIH; flew home|
|Feb 26||Admitted to OLOL for neutropenic fever.
|Mar 15||Transferred to NIH
Although it’s far away, I’m in the best place for my condition. One of the great things about the NIH is the collaboration of the different services; but it also makes for a lot of doctor visits during the day! At one point or another, I have been followed by hematology, surgery, dermatology, infectious disease, respiratory, PT/OT, nephrology, wound healing, transfusion, and pain management. For some reason, everyone wants to look at my butt!
You know it’s bad when the wound care nurse takes her first look at the wound and says “Oh Wow”.
My rectal abscess has been the biggest problem, requiring extensive cleaning and daily dressing changes. Transfers and changes are painful. Luckily, the wound continues to heal well and is reducing in size.
Other than the rectal problem, everything is doing well. I’m back on my Aplastic Anemia chemotherapy regimen. My blood pressure is the best it’s been in 6 years. I’m down to 215 pounds (from 265), although I know that’s mostly muscle wasting.
The main reason for transferring from the Lake hospital in Baton Rouge to the NIH was to receive granulocyte infusions. Only a few centers in the country provide granulocyte infusions. When neutropenic patients have infections they can’t fight themselves, these infusions are given to add neutrophils to the system.
I’ve had 4 granulocyte transfusions, and that should be all I need. The transfusion itself is no problem, but I tend to have a ‘delayed’ reaction a few hours later where I get fever, chills, and pain associated with the infection. But nothing near the pain I was having at the hospital in Baton Rouge, which was only relieved with positioning.
I’m happy to report that things are moving in the right direction. I have good and bad days (usually associated with the granulocyte infusions), which makes it look like an upward trending stock.
We always try to focus on the upward (positive) trends. Reaching milestones. Achieving goals. Angela provides daily goals for me, such as “Walk 3 times around the atrium” which is very motivational for me. (What better caretaker than a physical therapist?)
Now I’m able to sit up, which helps me to work (and blog!). I’m walking without assistance for medium distances. My body is starting to make its own neutrophils. My latest count was 150 (up from 0). 500 is a good goal to start with for a minimal level of protection, but ~1500 is normal.
I think this week will be very good for me. I won’t need any more granulocytes (hopefully), and will concentrate on getting my body to make my own neutrophils although there’s not much I can do about creating neutrophils; it has to happen on its own. We just have to keep on believing…. (One of my favorite songs)
I feel like God is breaking me down piece by piece for something pretty big to come. When I think about all the things I’ve been through, having some of the most painful, difficult, and life-threatening things to go through….yet having the best care from the doctors, nurses and of course Angela…to believe more than ever, “We got dis.”