New member/advice welcomed
 

hi,

i was diagnosed with AA anemia on 6/29/2013. finished ATG on 7/5/2013. for the first month my wbc was 0.1 and ANC was 0.0. I still have been receiving tx of blood and platelets every few days. when my wbc was low for the first month i got a nasty fungal infection that required 6 surgeries, that combined with Not being able go eat on surgery days really weakened me and deconditioned me, not to mention the pain that went along with the infection.

since my wbc has climbed as high as 1.1 but is hovering around 0.8, while ANC has gone as high as 0.5 but is hovering around 0.4.

i have been in the hospital since diagnosis. started on. 225mg of CsA but now im on 150mg after being as low as 125mg. i get my blood drawn to determine CsA level and thats how they adjust my dose. i get two doses a day. i weigh 130 lbs.

also when my counts where lower i was on every antibiotic ever created and my kidneys felt it, creatinine went as high as 2.1 but now has hovered around 1.5.

any advice, opinions or reccomendations would be appreciated.

Hello,
I don't have any advice but wanted to say that I'm sorry you've had such a harrowing experience. Also, it's still early to see an improvement for a lot of people. From posts it seems like different doctors have different expectations. I've read on here where some doctors are disappointed at the 2-month mark if no improvement is seen. My son's doctor didn't expect to see any improvement at all for at least three months after ATG and was happy to see some recovery of white blood cells earlier that that. I think it's such a rare disease that if, say, a doctor has only treated 6 people that have it and 3 happened to be early responders they start to expect that, even though in a population of 100 only 30 may ordinarily be early responders (for example). It seems like your ANC has risen nicely so far which is a good thing. I'm very sorry that you haven't been able to leave the hospital and for your surgeries. Hopefully the fungus is gone now and your body can focus on healing both your bone marrow and from your surgery.