A little more good news? Maybe?

Things have been going on as normal: getting blood about every 6-8 days and platelets every 3-4... lots of trips to the doctor and sticks from the IV needles. On Friday I met with Dr. Joyce who works closely with Dr. Tzachanis while Dr. T is on a much deserved vacation in Greece. While I'm not seeing much improvement on the red cells and platelets, she was encouraged that my white cells were up from .2 to a whopping .6 (remember that the low end of normal is 4.0). While this is still a very low number, the fact that it is increasing at all means that marrow is likely regenerating. I believe her exact quote was "your red cells are crap, your platelets are crap, you're a bruised mess, but you'll get there...it won't be like this next summer." I like Dr. Joyce.

I went in to the doc again today and had to get some red cells, but was very happy to hear that my white cells are up to .9. That number is my overall white count, which is made up of a bunch of different kinds of white cells including neutrophils which are what fight bacterial infections. While my overall white count was higher before the ATG treatment (usually around 2.0), my neutrophil count is now higher than it has been since before I first went into the ER. I have moved from the "severely neutropenic" category to "moderately neutropenic" which means that if things continue to go in this direction, I can come off some of my antibiotics and can ease up on some of my diet restrictions (there goes my excuse to opt for Cheeseburgers over salads).

Hopefully my other numbers will follow the example of my white cells, but for now I'll take any good news I can get. I've almost finished my afghan and am steadily progressing through season 3 of "The Wire." As Dr. Joyce so delicately pointed out, I'm a bruised mess and I've been pretty tired, especially in this heat, but for the most part I feel good. Kevin keeps my spirits up and he is very good company...for a Canadian (kidding!). We even got to go to Gloucester to spend a day at the beach with the Corkerys last weekend and are really looking forward to going to New Haven next weekend to celebrate Chris and Melinda's wedding. Erin and I are re-watching "Felicity" for the millionth time and I get to Carlisle to see Elliott (and Mom and Dad and Ryan and Rebekah and the fetus) often too. Besides all this blood nonsense, I'm having a great summer.

Thanks again for all the well wishes and kind words. I can never get enough of those. More soon!

Blood, etc.

Nothing super new to report. Got a bag of blood and a bag of platelets on Saturday and have another appointment tomorrow. I'll be off prednisone by the end of this week and hopefully off most of my antibiotics by next week (white count permitting!) so things are going on as anticipated. I'd love to start seeing better blood numbers in the next few weeks but according to my doctors and every single web article on aplastic anemia (I've had some time to kill on the internet) I shouldn't be expecting much until September/October-ish or maybe even later. So...we wait.

Two things are on my mind today so I'm going to break from strictly blood stuff for a bit and indulge.

Tomorrow, July 20th would be Alex's 25th birthday. I've been thinking about this day and how I would feel for a while now, but I didn't anticipate I would be this emotional. Alex and her whole family were so strong and positive during her illness that coming to peace with her death came more naturally than I thought. Her life was way too short but incredibly meaningful and to buy into the old cliche, she really will live on in so many ways. I miss her every day and now more than ever, though, for very selfish reasons. If she were still here she would know exactly what kinds of jokes to make about my blood and my bruises and my skunky cyclosporine pills, or how to comfort me after a long day at the hospital. She would let me be grumpy or negative if I wanted to be and would distract me with deeply intellectual theories on "The Bachelorette."

I'm determined to find meaning in my illness and come out on the other side better in at least some small way. One positive thing I've realized is that while our diseases are very different, I feel like I have a better understanding of some of what Alex felt and went through and to an extent, our bond is even stronger than before she died. While she can't be here physically, she is still giving me so much strength and I will get through this in large part due to our friendship and her example. I wish we were spending her birthday together being silly and snarky, but instead I'll do my best to have a happy, positive day reflecting on our friendship and how much I love her.

ALSO, I'm going to have a nephew!!! I can't wait until December when I get to meet the first in the next generation of Kilians and play with him and teach him how to properly (prop-a-lee) make fun of my Mom's Boston accent (sorry Mom...love you). It is hard to get down about my situation with something so exciting and special to look forward to.

That's enough of that. Thanks to everyone for reading and posting and emailing and just thinking about me. The support means a lot. Can't wait to give you all good news soon!

A little bit of good news?

Before going inpatient for my ATG treatment, I was typically in the outpatient clinic two times a week to get platelets and about once every week to 10 days to get blood. To give a reference point, here are the normal blood levels for a woman:

White cells: 4.0-12.0

Hematocrit (proportion of blood volume occupied by red blood cells): 36.0-48.0

Platelets: 150-300

When I got to the ER on May 25th, these were my numbers:

White cells: 2.0

Hematocrit: 15

Platelets: 9

I get transfused with platelets if they are under 20 and with red blood cells if my hematocrit is under 22 (since white blood cells only live about one day, they do not transfuse those unless you have a life threatening infection). Since leaving the hospital after my ATG treatment, I have needed platelets about every other day (they typically rise to about 50 after a transfusion then go back to less than 10 the next day) and blood twice a week. My white cells have stayed at .2 since the ATG treatment.

NOW FOR THE GOOD NEWS!

I went in to the doc yesterday (7/12) and for the first time since leaving the hospital, I did not need any transfusions!

White cells: .2 (still a long way to go there)

Hematocrit: 24.7

Platelets: 26 (only 6 times less than normal instead of 15!)

I was so happy, in large part because my arms are looking pretty busted up from all the IVs and it is tank top season after all. While this doesn't necessarily mean that the treatment is working yet, it at least means I can hopefully go back to my normal twice a week appointments instead of 3 to 4 times a week. My doctors had warned me that things would get worse before they got better so fingers crossed I'm on the upswing!

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/