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Another good month goes by transfusion free!

Another month has come and gone, but this past week was really great. Things with me are going well. I haven’t had a transfusion in a month, which is a good sign. My doctor visit last week was good; while my counts are still low, they are stable and ‘live-able’. That means that I am still anemic and prone to fatigue, as well as at increased risk for bleeding and infections. But I don’t wear a mask anymore…not even on planes!

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But it also means that I’m not in dire need of a bone marrow transplant, which is the good news. These new low levels may be my new life. I may still need transfusions, but it’s great news considering where we’ve been. My bone marrow seems to be rebuilding, but we really don’t know how much it will rebuild itself. My latest numbers for those of you keeping score:

ANC:1400, HGB: 9, PLATELETS: 24

In fact, my doctor isn’t sure why I’m better. Was it the horse serum?

horse-yuck Spontaneous recovery? Exercise? Positive thinking? Prayer? Probably a little of everything. Since we really don’t know what causes Aplastic Anemia most of the time, the treatment is often a shot in the dark. And the recovery is probably due to a combination of factors.

I’m still traveling every week, much to Angela’s displeasure, but I remain germophobic. In fact, I just got back from 2 consecutive international trips for work. I try to exercise every day, often walking 3 miles in the morning with my ‘Green Willow Crew.’ And of course, I’m back to brewing beer in the BrewShack! My White Ale-igator was the best ever!

white-aleigator

But this past week also had 30 more blood donations for my cause at Runnels School where my children attend. Thank you to everyone that helped coordinate the event as well as those who donated.

blood donor

I even got to talk to representatives from the national Aplastic Anemia association about doing more to promote awareness of this disease through my blog. I’m so happy that this blog has had such a great influence. Please consider donating to their Foundation; bone marrow failure diseases are so rare, they don’t have the big exposure of other organizations dedicated to helping patients with Aplastic Anemia, Myelodysplastic Syndromes, and Paroxysmal Nocturnal Hemoglobinuria (see, I told you they were rare!)

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And thank you to my friend Ray Castle at LSU who coordinated more bone marrow registrations with the athletes at LSU last week, despite being sick himself (yes, I stayed away from him!). A representative from the national Be The Match foundation even came here to discuss taking our program at LSU national so other schools can register their athletes in the registry.

That brings our total up to about 200 since Baton Rouge Mayor Kip Holden announced his challenge to sign up 250 registrants in 3 months. But we’re not done yet…

I’ve also nearly reached my goal of raising $2000 for Be the Match which will cover the cost of adding 20 people to the bone marrow registry. Please help us cover the cost for adding our 200 people to the registry by donating here: http://www.bethematchfoundation.org/goto/bonemarinara

 

Hope, help, health, healing, and happiness

Last month, I talked about my “5-Hs” that I pray for each day, and I wrote about helping. As you can see above, there are a lot of people out there willing to help. You just have to ask; although you sometimes have to ask the right way.

This month, it’s about health. It goes without saying that good health is the key to a good life. But even in poor health, you need positive thinking to keep you going, and to get you back on the path to good health. It can start simply by stopping smoking and reducing alcohol consumption, but I believe the biggest factor is to start exercising.

exercise_motivation

I believe that exercise helped save me. I may be biased since I’m on the American College of Sports Medicine’s “Exercise is Medicine” committee….but we all know the importance of exercise for general health. For years, I’ve supported exercise for treating chronic diseases, only to suffer one myself. Unfortunately, there’s no research on exercise and Aplastic Anemia, but that hasn’t stopped me from staying active.

And, being the research geek that I am, I’m writing a paper on Exercise and Aplastic Anemia to help increase the awareness of the importance of staying active with this disease, even if there is no hard research one way or another. Until someone proves me wrong, my hypothesis is that EXERCISE IS MEDICINE!

I Corinthians 9:26-27. I run straight to the goal with purpose in every step. I am not like the boxer who misses his punches. I discipline my body like an athlete, training it to do what it should.

We often take our health for granted. I know I did. I think about how my body reacted to my sepsis during my recovery. We always say that the better shape you’re in before you have surgery or get sick, the easier your recovery. Luckily, I was relatively active before I got sick. In addition to exercising for your health today, you should be thinking about your health tomorrow!

i-dont-always-exercise-when-i-should-but-when-i-do-ill-do-it-tomorrow

I’ve tried to get back to jogging, but my leg muscles just don’t seem to have the oxygen they need. Hopefully I’ll get to get back to some strength training again soon as well. I love telling people that I walk 3 miles a day, 5 days a week despite having my disease. If that doesn’t motivate you to get moving….

MOJO!

7 thoughts on “Another good month goes by transfusion free!”

  1. Yes Phil I agree exercise is medicine. It is also said ” let food be your medicine and let medicine be your food” it is in the bible. Goes along with “you are what you eat” In my 34 years of clinical
    experience I have seen that both of these truisms really are right on.I think our food supply has a lot more to do with disease than is now being given credit for.I am over the moon about your present physical state. much mojo to you and yours!!

  2. Great blog and I am so glad to hear that you are doing well. You are an inspiration to all that you come into contact with. Thanks for sharing your journey!

    Mike

  3. Congratulations. Steph and I continue to pray for your steady improvement and hope we get to see you one of these days soon
    All the best to Angela.

  4. Find an exercise you like and you will do it forever. So glad you are doing well. Still thinking/praying for you and your family.

    Love to you,
    Billie

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