Two years ago this month I was released from my stay at St. John’s Mercy Medical Center.
I still regularly see both of my hematologists/oncologists. I see my primary every three months, and the transplant specialist every six months. I have blood work done every month to month and a half.
I still take a daily 350mg dose of cyclosporine, in the form of fourteen 25mg pills. My initial doses varied, but I’ve been on the 350/day for the better part of the last two years. That means I’ve taken well over 10,000 of the stinky little pills, the smell of which I still haven’t gotten used to. However, I will take those stinky pills any day instead of the god-awful cyclosporine liquid I took in the hospital.
Did you know that cyclosporine was discovered in 1971 and is derived from a Norwegian soil fungus?
I had a very tiny blood vessel burst in my right eye and cause a distortion (like looking through water or curved glass) in the upper right-most portion of view for that eye. This happened in Spring of 2007 and from what I’ve been told, it’s very rare for somebody my age. Specifically it was a macular edema in my subretinal neovascular membrane. Was it related to my Aplastic Anemia? I don’t know, and neither did any of my doctors. I post it here in case somebody else out there with AA is in a similar situation.
One of my doctors, the transplant specialist, thinks it will be very likely that they’ll start trying to wean me off of the cyclosporine this fall. His benchmark was the two year point, which I’ve just now hit. My counts are steady, though still low on platelets, and sufficient to try and reduce medication. The theory is that they will start to lower the dose gradually, and at the same time aggressively monitor my counts. If there is a drop, I go right back on the meds – which will hopefully still be effective. Another round of ATG/chemo or even a full transplant is what I have left if cyclosporine therapy is no longer an option, so hopefully things will go well.
Correction: I was wrong about the two year cyclosporine plan. It's a five year plan.