We had a combination blood drive and bone marrow donor drive at United Blood Services of Baton Rouge, along with the Be the Match organization on Saturday, April 26. I’m happy to report that we had 71 sign in, and 54 donated either blood or platelets (or both!) and 6 more will return to donate this week. What a great turn-out! I was very humbled by the number of people we had (and I think we overwhelmed the staff!) Thanks to everyone for organizing, volunteering, and donating!
You can check out photos from our drive on our Facebook page. I think Facebook was a big part of our success thanks in part to the last minute blitz by Kim Heard!
For those of you who couldn’t attend, please donate blood or platelets locally; you can also visit www.BeTheMatch.org to learn more about testing for being a donor. If you would like to make a monetary donation, you can donate to the Be The Match organization through my donor site here.
You can also donate the the Aplastic Anemia Foundation here.
You may have seen that we had an additional potential bone marrow recipient added to our drive last week, Rachael Rossi Savario. She too has Aplastic Anemia, and lives locally. That’s quite amazing since the incidence rate is anywhere from 1 to 5 in a MILLION. And we have at least 2 here!!! (Something in the water here?)
She couldn’t make it to the drive on Saturday, but I was able to friend her on Facebook, and we thought at some point we’d meet face-to-face, probably over an infusion at Mary Bird Perkins. (Meeting over cup of coffee would be better, though.)
As fate would have it, I ran into her this morning as I was going into the doctors office for my blood work, and she was leaving! She called out my name in the parking lot and we chatted for a few minutes as she was leaving for another platelet transfusion. What an amazing moment.
She was actually treated 2 years ago with the same treatment that I had (Horse Serum ATG & Cyclosporine) and had a full recovery. However, her platelet counts are low again and she’s in need of a bone marrow transplant.
As I’ve said, at our age, we have a 50-50 shot of the immunosuppression really curing the disease, and there remains a good chance I’ll need a bone marrow transplant as well.
That’s why it’s SO IMPORTANT to get into the bone marrow donor registry. Its FAST & EASY! Just visit www.bethematch.org for more information!
So, please add Rachael to your thoughts and prayer list. At this point, it’s in God’s hands, and the only way that works is through your prayer. And don’t forget to send your #MOJO!
We got dis
In the beginning of my battle with AA, I used the slogan, “I got dis,” referring to the fact that I was going to be able to handle this…by myself. While it’s important to be strong and proactive, I’ve learned there’s no way to go through anything like this by yourself.
“It takes a village.” Family and friends to support, help, and donate. Doctors and nurses to direct treatment.
But most of all, I learned that prayer and God are the most important players in this fight.
Isaiah 41:10 Fear not, for I am with you; Be not dismayed for I am your God. I will strengthen you. Yes, I will help you. I will uphold you with my righteous right hand.
Aplastic Anemia is such a rare condition that the medical community isn’t really sure how to treat it, particularly in someone my age. Because of the rarity of the disease, the doctors just don’t know a lot about how to treat it like they do other things like cancer. The survival rate is much better in younger people, but the incidence is also higher. While I do all I can for myself (medication, exercise, avoiding infection), I know that this is really in God’s hands.
Rise of the ANC?
One of the most important things for me in this battle is to avoid infection, which is what kills most AA victims. The “ANC” is the Absolute Neutrophil Count, which is the marker for susceptibility to infection. Neutrophils are white blood cells that fight infection; the more you have, the less risk of infection. Low ‘normal’ ANC is 1500. There is a severe risk of infection with ANC less than 500; moderate risk at 500-1000 and mild risk at 1000-1500.
I’m happy to report that my level jumped from 300 to 500 last week, but was down to 450 today. That’s a great sign that the white blood cells and infection fighting neutrophils are on the rise. Now I ask that you pray for me to get to the 1000 level to further decrease my risk of infection!
With all this talk of infection, some of you may have seen that I have to wear a mask indoors. While I don’t wear it at home (as long as everyone’s healthy), I do wear it when I’m out to avoid any infection. While my ANC level remains below 1000, I think it’s a good idea to continue that, even though it’s not to convenient. So I came up with the top 5 things a mask is good for:
1. Keeping germs and allergens out, particularly during this allergy season!
2. Catching barf when you throw up and can’t get to a toilet or garbage can in time (yes this actually happened to me)
3. Curbing the stench of smelly bathrooms and waiting rooms.
4. Keeps me from biting my fingernails.
5. Having people keep their distance without having to tell them.
I added a page to the Bone Marinara blog, My Story, that gives everyone a quick summary of what I’ve gone through in case you’re new to the blog or just pressed for time. Either way, I think it’s a good read and quite amazing to think about what we’ve all been through and how things like this change our lives.
Peter 1:6-7 So be truly glad! There is a wonderful joy ahead, even though the going is rough for a while down here, these trials are only to test your faith, to see whether or not it is strong and pure.
A final note: I’ve updated our donor list to reflect multiple donors, and would like to point out John Sommers, who has donated 10 units of platelets since this started in January! But I didn’t get the list of donors from the blood drive this weekend, so please let me know if I missed your name!