Category Archives: Inspiration

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.

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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!

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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!

Mission Accomplished!

Set goals. Achieve goals. Repeat.

That’s how I get through these uncertain times.

My blood counts go up. My blood counts go down. It’s like a yo-yo each week. The emotional roller coaster I’ve talked about. Last week, everything was down again after we were very encouraged by the highest counts and going 4 weeks without a transfusion (that’s a really good sign).

setgoalsWhile I was in the hospital, Angela was a fantastic goal-setter (What would you expect from a physical therapist?) She would write them on the whiteboard for me each day. And made sure I did them. From the small goals of even getting out of bed 3 times a day to the big goals of walking 3 times a day for 20 minutes at NIH. It feels great to look back and see how my goals progressed.

My biggest goal at the beginning of the year was to attend my annual research meeting, TRAC, in Park City Utah in August.

Being at TRAC wasn’t just for me; it was for the TRAC ‘family.’ I started this meeting 16 years ago and treat this group as family.  So I did everything I could to have the health and stamina to get there.

Mission Accomplished.

TRAC2014

I even got to spend some great quality time with Angela and take in the wonderful sights. She deserved a vacation after all she’s been through the previous 6 months.

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Another goal of mine was to get back to brewing beer at the Brewshack. My last batch was in January before I went into the hospital for 2 months. I didn’t know if I would have the samina to brew for3 hours, but with the help of Chase, today I brewed my “Anemia Ale.” (Come by in about 4 weeks for a taste!) The By-You Brewshack is Back!

Mission Accomplished.

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Speaking of reaching goals, our new friend, Steve Matchett of MarrowQuest.org, completed his quest a few weeks ago, riding from the top of the Mississippi River to the mouth of the river in Venice. Special thanks for my friends at the Faux Pas Lodge and Venice Marina for helping Steve out.

In addition to Steve’s goal of riding to the mouth of the Mississippi River, he had another goal of having Sally Ann Roberts of WWL TV in New Orleans sign his bike on the morning show that week. You may remember that Sally Ann was a bone marrow donor for her sister, Robin Roberts a few years back. Mission AccomplishedWatch the video here:

When Steve finished his ride, he was greeted by lots of bone marrow patients, donors, doctors and nurses at Ochsner Hospital in Jefferson last week as well. An awesome finish!

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Through Steve, whom I had met just one week prior to his finish, I got to meet some great people from the Hendrick Marrow Program as well: Courtney Hurd, Pam Heaton, and Paul Spadaro. We all enjoyed dinner with a few more friends (Jeff & Susan Heartling, Kristin Akin, and Blain & Cheri Efferson) at Palace Cafe that night (one of my favorite New Orleans restaurants).

I told Steve how amazed I was at accomplishing his goal, particularly  as an ‘older adult.’ I’ve been promoting physical activity in older adults for the past 10 years. I told him that he has a great story of a physically active older adult using exercise to promote a cause.

SPM-100-Feet-To-Go-south-of-Venice-Louisiana...8.18.14-1024x694The biggest thing that impressed me about Steve was the fact that he didn’t ‘have skin in the game.’ He wasn’t riding to raise money or awareness for something he personally had. He saw a need for marrow donation and took it upon himself to do something about it. Steve set a goal and found a way to accomplish it pretty much on his own. More importantly, his goal helped others reach their own goals. I was honored to be a part of his quest.

Steve said, “You can’t jump half-way over a canyon.” When you set a goal, you have to go all the way or you won’t make it… Although Evel Knieval tried.

When you set a goal to do something, it’s all or none.  It’s kinda like Yoda said:

Yoda

When you set a goal, commit to it. It’s not always easy to accomplish your goals. Commit yourself to doing whatever you need to do, particularly if you’re doing it for someone else.

Of course, there are factors you can’t always control in accomplishing your goal (like your blood counts). If you commit to something, follow through with it with everything you have, even if you feel like quitting. Accomplishing goals always feels better than quitting.

Don’t give up. Don’t ever give up.

Obviously, we don’t always reach our goals. You won’t succeed 100% of the time. Remember, in baseball, being successful 4 out of 10 times is an amazing accomplishment! And even though you fail, you continue to get in the batters box to try again.

Plan ahead and be ready to achieve your goal. Expect success, but prepare for failure….like Evel Knieval did.