A synopsis of my bad blood

Life has been turned upside for the past 6 weeks, so in the interest of keeping everyone I care about updated (since I'm not always so great at returning calls/texts/emails), I decided to start this blog. I hope over time it becomes less about me being sick and more about truly important things like Real Housewives of New Jersey or the new pretzel flavor M&M's, but for now unfortunately my aplastic anemia is what's up. Here goes:

For the first month or so after running the Boston marathon I had been getting really weird bruises, nosebleeds, and some extra fatigue, so I went to the doctor on 5/25/10 to have blood work done. They took some blood, sent me home, then called me back an hour later and said I needed to go to the ER immediately because my blood counts were so low I could bleed out from a cut or fall. For the first 24 hours I was in the hospital they tossed around some scary words like leukemia, but after a few days and a bone marrow biopsy they thankfully ruled that out. I stayed inpatient for three days and got blood and platelet tranfusions and they let me go home over the weekend if I promised to wear a mask and wash my hands often--my white counts were low so that I was (and still am) extra susceptible to infections.

Over the next 4ish weeks, I was in the hematology clinic 2-3 times a week having blood and platelet transfusions while they monitored my numbers and hoped things would get better on their own, but......no dice. After excluding a host of viruses, they officially diagnosed me with aplastic anemia which means that my marrow isn't producing enough red cells, white cells, or platelets anymore. Bummer, since I was really hoping I would bounce back and just be some sort of medical mystery. Most cases of aplastic anemia are idiopathic so it's likely I'll never really know what caused it. I have some conspiracy theories, but one guess is as good as any other so I'm going to settle on just bad luck.

When they found out my brother and sister weren't bone marrow matches they suggested I go into the hospital for a week to have a chemotherapy treatment called ATG and cyclosporine. ATG is serum from a rabbit that kills the T cells that are attacking my marrow. I went in to the hospital on 6/25 and got that through IV for 6 hours a day for 5 days. Cyclosporine is a pill that supresses the T cells as they grow back so that my marrow has time to regenerate. I will likely stay on this pill for a number of months.

The hospital stay went about as well as can be expected, thanks to the fantastic team of nurses at Beth Israel. I had some nasty days, chills, fevers, nausea, hives, and one bad headache scare that resulted in a 4:00 AM catscan (luckily nothing was wrong, just high blood pressure from some of my pills) but I got out on 7/1 and knock on wood have felt pretty good ever since. I'm on a host of meds, mostly antibiotics because my white count is so low, and the prednisone is making me a little bloated/grumpy (or maybe that's just all the 'get well soon' junk food I've been eating) but overall I've been doing quite well.

I'll be back in the outpatient clinic 2-3 times per week getting blood and platelet transfusions while the ATG and cyclosporine are doing their job (fingers crossed!). It can take anywhere from 1-6 months to start seeing an improvement in counts, so I'm hoping to be on the earlier side. I do love seeing my very cute doctor twice a week, but spacing it out even more wouldn't be the worst thing.

I can't thank people enough for all their support. This has been a difficult time to say the least but hopefully something to look back and groan about soon. I'll try to update this regularly!

For more info, check this out:
http://www.aamds.org/aplastic/disease_information/aplastic_anemia/index.php

Become a bone marrow donor...it's easy!
http://www.marrow.org/