Update

Here is a brief update on my blood:

Things have been going well! My red and white counts have been holding steady and my platelets have been rising little by little. I did have a little scare two weeks ago and went to the emergency room with some concerning flu symptoms, but was thrilled to find out when I got there that it was JUST a flu and nothing more serious. Even better was that my white count boosted way up to almost 7.0 to fight whatever was going on in my system. My doctors said it was a great sign that my white cells could respond like that on their own, so the 6 hours in the ER on a Friday night was worth it (sort of).

When I went back to the doctor last week, my counts were:

White: 3.1

Hematocrit: 29.8

Platelets: 62 (best they've ever been!)

It has been almost 4 months since my last blood transfusion and about 2.5 months since my last platelet transfusion. Great news, so knock on wood, please!

At this point, it has been 6 months since my ATG treatment and my doctor thinks I'm ready to start tapering off my cyclosporine. This is going to be a VERY slow process (probably a year or more) and I may go visit Dr. Neal Young at the National Institute of Health for his opinion on how best to enter into the maintenance phase of my disease. Getting off my medicine is scary but necessary and I'm very happy with the progress I've made.

So, 2010 is wrapping up quite nicely, with some encouraging news about my health and a beautiful new baby Kilian! It has certainly been a year of incredible highs and the lowest lows. I think I'd like for 2011 to be a little more medium, but this year has taught me how to deal with whatever life throws at me and that I have a lot of wonderful people around to help me in big and small ways.

Thanks, and Happy New Year!

Long time no post!

Sorry about my total blog laziness. Thankfully, life has been busy (in a good way) that updating kept falling though the cracks.

The last few months have been back to a watch and wait pattern at the doctor. At this point, it has been 8 weeks since my last blood transfusion and 4 weeks since my last platelet transfusion. My numbers have settled to around 2.5 (white), 30 (hematocrit), and 25 (platelets). All three could (and hopefully will) be better, especially the platelets, but my progress is definitely encouraging. The plan right now is to start to taper my cyclosporine after the holidays. My doctor and I have to discuss whether we do a rapid taper or a slow taper, and the benefits/drawbacks of both. The chances of relapse at the time of taper are a little scary, so we'll have to be careful.

The better news is that I'm back to work and at a new job! At the same time as I was being diagnosed with Aplastic Anemia, I was offered a job working in resource development at the Harvard Kennedy School. Because of my health issues, I had to decline the job which was a big time bummer BUT right around the time I was gearing up to go back to work, Harvard called because they still hadn't filled the position and wanted to know if my situation had changed. After a very frustrating summer, I was thrilled at how this worked out. So far so great at the job, and it definitely takes my mind off my blood troubles, so yay!

I'll try to be better about updating but assume no news is good news, and if there is great news I'll definitely let you know!

Another quick update

I have been such a lazy blogger lately. Sorry! Lots going on in my world, but for my loyal readers, here is a quick update on my blood:

Today marks 3 weeks since I've needed any type of transfusion! My white count has settled in the mid 2s and I'm probably done getting neulasta shots. Hopefully I will come up closer to 4.0 (the bottom of the normal range) soon, but 2 is good for now and still allows me to eat what I want and walk around without a mask, so phew. My hematocrit has been floating between 26 and 30. I'm getting epogen shots to stimulate that growth, but the doctors think the improvement is largely natural. I can definitely feel the difference between a hematocrit of 22 and a hematocrit of 29 when I'm walking up and down 4 flights of stairs to my apartment, so I'm happy about the improvement. My platelets have been sticking at 21 for the last two weeks. 20 is tranfusion level so 21 isn't great, but it keeps me from having an IV stick so I can't complain. We just started the nplate to stimulate those cells last week so hopefully that kicks in soon. I don't think I'm the bruised mess that I once was, so yay!

I'm down to about once a week at the doctor and supposedly once every other week isn't too far away. The goal was for me to be transfusion independent at 90 days post treatment (which is average response time) and I am now at 90 days and haven't needed a transfusion in 3 weeks (knock on wood please!) so I'm thrilled with my progress. Not out of the woods and there still many hurdles to jump over, but good enough to celebrate for now!

I bet I have more white cells than you do!

Even though I forgot to say my "rabbit, rabbit" for luck when I woke up this morning, September started off with a great appointment.

I got another neulasta shot on Friday which made for an extremely uncomfortable Saturday and Sunday. Back pains, fever, and general grumpiness. It wasn't for nothing, though, because today my white count was 24.3! Normal range is 4.0-14.0, so right now I've got white cells to spare and could probably lick the sidewalk and not get sick (no plans to do that, though). That will go down and settle to a more reasonable number (hopefully 4.0 or above) but the fact that it raised to more than 3 times higher than my after my previous dose means that I have cooked up even more marrow. Win! My red blood cells raised .5 since my last visit to 23.5 and my platelets were 22, hovering around the threshold for transfusion. That meant that today was another great day without needing an IV needle. I'll take it.

Since the neulasta has been working so well, my doctor gave me a similar shot today called epogen which will raise my red cells and in turn give me much more energy. If it works, that could mean the end of red cell transfusions for me (since I seem to be making new red cells on my own anyway, the epogen will just speed it up). The hope is to also get me on a similar shot for my platelets, especially since those have been the slowest to recover, but that medicine is new and requires special ordering so it won't be here for another week or so. Barring any major setbacks or wrong turns, that could mean that the need for all transfusions will be over in a couple weeks. I'll still need weekly doctor's appointments to get booster shots until my marrow is making normal levels of all my blood junk on its own, but the visits will be significantly shorter. Now please go knock on wood. I don't want to press my luck.

In my last post I didn't do justice to my wonderful trip to Canada with Kevin. Canada was fantastic and not nearly as Canadian as I had anticipated. Despite not running into any Degrassi stars I loved Toronto and it was neat/boring (in a neat way) to see Kevin's nerd school. The best part was definitely meeting his super nice, funny family because they were nice and funny and his mom bought me delicious Canadian candy bars. I thought Kevin was great before, but now he comes with candy bars! I am lucky. The next weekend all my best best friends from college were in Boston together for a nice but all too brief visit, and now it is September which is my favorite month. More wins!

I'd like to thank everyone who has complimented me on my positive attitude throughout this whole ordeal. I've been very lucky to be sharing good news lately, but to be fair, it has definitely not been all sunshine and roses. I didn't really feel like blogging during the uglier side of this, but I have for sure had my share of doctor's appointments left in tears/not feeling like getting out of bed/sad, low, bratty moments. I am lucky to have people who love me enough to let me take it out on them and ride it out with me. Thankfully those moments are getting fewer and farther between and will hopefully stay that way. I will continue to update you (my loyal blog readers) on my progress and will let you know immediately if I get another hug from Dr. Tzachanis.

Quick Update

Knock on wood, but my blood seems to be heading on the right track! My transfusions have spaced out so I'm needing platelets about every 4 to 6 days and blood every 10-12. I got a Neulasta shot 10 days ago to raise my white count, and the results of that were very encouraging. The first dose I got post treatment raised my white count from .1 to .2, the second dose two weeks later raised it from .6 to 1.1, but this latest dose raised it from .8 to 7.6! That meant a very uncomfortable day of achey bones, but it also means that there must be marrow growing for the white cells to build on. It has tapered back down to 2.5 since last week which is normal. Hopefully it will start building on its own (along with my red cells and platelets) without too many more shots.

I'm still having some set backs like an iron build up in my blood, so I'll need to start new meds for that, but my doctors are hopeful that I'm on track to be transfusion independent by October-ish. We'll see!

...and then Dr. T hugged me!

Another good appointment!

After getting a bag of blood and a bag of platelets last Sunday (8/1) I went in for an appointment on Tuesday (8/3) and was pleased to find out that I didn't need any blood products. My numbers had dropped but not to the level where I would need to be transfused.

My next appointment was Friday (8/6) and since it had been 5 days since my last transfusions, I was sure I would need more red blood and platelets. When my numbers came back, I was very happy to learn that my white blood level had risen from .9 to 1.1, my red blood level had held almost to what it was on Tuesday (23.2), and my platelets had dropped to 16. That platelet level meant I needed to be transufsed, but a drop from 50 to 16 in 5 days is MUCH better than immediately post treatment where they had been dropping from 50 to 6 in 2 days.

I was happy with these numbers, but even more excited when Dr. Tzachanis came to meet with me. He had been on vacation in Greece for the last two weeks and was very encouraged to return to these results only one month post treatment. So encouraged that he hugged me! I didn't mind.

My white blood numbers are high enough now that I can drink tap water and eat fruit and salads. I never thought I'd be so excited for healthy eating! I celebrated with one salad, some berries, and two ice creams over the weekend. I'm also allowed to stretch out my appointments a little more and don't have to go back to the doctor until Wednesday.

I don't think I'll be able to fully believe that I'm on the upswing for real until I've had a few more positive appointments, but good news is good news so I'm happy!

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/