My blood in the new year

I realize that it had been over 6 months since my last post. Luckily, my blood situation is not something that affects my daily life anymore, so I've let this blog fall by the wayside. I'm happy to report that as of January 9th, I'm no longer on any medication and my blood levels are all either normal or normal enough not to worry about. I'm still seeing Dr. Tzachanis monthly, but if all continues to go well, we can hopefully space out to every few months. It's hard to believe that 18 months ago, I was spending 20+ hours a week on Beth Israel's 7th floor. It has been about 15 months since I've needed a transfusion, and hopefully, I never will again!

Life is otherwise fantastic and 2011 was a really wonderful year. I'm not sure I'm interesting enough to have a blog without a debilitating blood disorder, so unless my hematological situation changes, this will probably be it for "Meaghan's Bad Blood." The last year and a half has been quite a journey and while I hope to be able to leave aplastic anemia in my past, I will always be moved by and grateful for the love and support I received from all of my friends and family.

Thanks for reading! Go Patriots!

Bloodaversary

Happy Memorial Day, everyone!

I have been a lazy blogger lately but my blood has been on my mind a lot this week since it was the last week of May 2010 that this mess all started. I am happy to report that a year later, my condition is much more stable and I have a lot to be hopeful about.

When I went into the hospital on May 25th, 2010, my numbers were:

White: 2.0 (ANC 500)

Hematocrit: 15

Platelets: 9

At my appointment on May 27, 2011, my numbers were:

White: 3.1 (ANC 2100)

Hematocrit: 35.1

Platelets: 91

All of my stats have been basically stable or climbing as I continue to go down on the dosage of my medicine, and still plan to be off completely by the end of the year. Last Memorial Day weekend, I spent Friday, Saturday, and Sunday in the outpatient clinic of the Hematology unit at Beth Israel after 3 days of inpatient treatment. This Memorial Day weekend, I spent Friday signing a lease for an apartment with Kevin, Saturday at a BBQ with friends, family and my unreasonably adorable nephew, and Sunday on a 40 mile bike ride with Kevin. Last summer Dr. Joyce told me "your white cells are crap, your red cells are crap, you're a bruised mess, but next summer won't be like this." I'm so relieved that at this point it looks like she was right!

I feel incredibly lucky to be where I am today and to have the support of so many friends and family over the past year. I spent some time recently going through all of the cards, emails, facebook messages, etc. that I have received since first getting sick, and it was really moving to be reminded of all the wonderful people in my life.

That is about as flowery and sentimental as I feel like getting about my blood right now, but thank you to everyone who has helped make this year such a great one despite unfortunate circumstances. I'm looking forward to a fun, active summer with minimal days spent in doctors offices, and hopefully not much time for blogging :)

Meaghan's not so bad blood

Today I had a great appointment. My numbers were:

White: 2.8

Hematocrit: 31.2

Platelets: 116

Look at me!! That is over twice the hematocrit I had when I first went to the hospital, and almost 13 times as many platelets! My doctors are thrilled with how my numbers are progressing so I have started to taper my cyclosporine. I will taper over the entire year and continue to check my counts every month to make sure everything is still going in the right direction.

Once upon a time we all just hoped I would stop needing transfusions and would have been happy to go through life with 25 platelets, but at this point my doctors think there is a great chance that all of my numbers could return to normal at some point. Of course I'm still nervous about the possibility of a relapse and that possibility will never really go away, but things couldn't get much better right now so I'm very thankful.

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.