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Story of an Alpha Thalassemia Baby

Living with Thalassemia

Living with Thalassemia:
Student Projects:
"Blood Transfusions - the Lifeline for Thalassemia Patients", by Natalie Maino
Patient Stories:
▶ Thuy Carpenter
▶ Chandan Das
▶ Paul DiLorenzo
▶ Meghan Foe
▶ Jane Huynh
▶ Rammeet Kaur
▶ Kim
▶ Perry Lai
▶ Imsub Monmeesin
▶ Braulio Navarro
▶ Huythong Nguyen
▶ Olivia Stahl
▶ Siddhant Talwar (2009)
▶ Siddhant Talwar (2015)
▶ Abby Torkelson
▶ Susan Winner
▶ Karim Zamani
▶ Serafina Sammarco: Isabella's Journey

Patient Stories

Interview with Kim: EXERCISE


December 2017

Hi! I’m Kim. I'm a petite beta-thalassemia major patient who is asleep the minute the first unit of blood is hanging. I've been working out since I was a sophomore in high school and can't imagine ever giving up. I'm a mom to a four-legged Maltese Mix pup who loves to play fetch and be spoiled with hugs and kisses. As a little kid, I always wanted to be a nurse and made that dream come true a few years ago. Now, I'm a pediatric hematology/oncology nurse, I am loving every minute of it, and often have a private giggle at how funny life can be. I'm somewhat of a globe trotter: every year I try to go somewhere overseas and explore other cultures.

When did you start incorporating exercise into your daily lifestyle?

I started seriously exercising when I was a teenager in high school. Being a teenager and feeling the pressure to “fit in", I started to work-out to manage my weight. That time has passed and now I work out to maintain weight and stay healthy.

What type of exercises do you enjoy?

For me, I always like exercises that change constantly. I'm not the type to sit on a bicycle or run for 30+ minutes. Luckily, I found a private gym that provides personalized group training with a mix of circuit training, boot camp, and HITT. I absolutely love it!


What benefits have you experienced from exercising regularly?

Weight and Diet! Since working out, my body doesn't crave the sugary and salty foods as much. I still love my French fries. But it's easier for me to say no to sweets and salty foods.

Bone Density. Although thalassemia can cause early onset osteoporosis, my bone density scans have been consistent over the years.

Mental Relief. I treat my work out time as MY TIME. It’s my time to just relax.

Strength. I've gained muscle mass, core strength, and flexibility. I lift weights that don't make sense if you look at my size. My trainers don't know about my thalassemia. That's my choice, because I want them to push me as hard as anyone else and not feel hindered because of my condition.

Youth. I look younger than my age.

What would be your best advice for someone looking to start exercising?

My best advice and what I tell all my friends: Don't overdo it! Start off easy and simple. Just like you, your body has to learn and adjust to this new demand. Take it easy, slowly build up your strength and then challenge it slowly.

Additionally, start off with something you ENJOY doing...whether it is hiking, dancing, yoga, biking, playing ping pong, frisbee, rock climbing, etc. Try something new, or what you have always though would be fun.

Have you ever experienced any setbacks or barriers to exercise? If so, how did you overcome them?

When I was little, my parents were always afraid of me over-exerting myself because of my thalassemia. They didn't let me do anything physically demanding as a child (no dance classes, sports, or playing outside). I think my mom thought that I should have been excused from PE in school altogether and at one point I almost got my doctor to write me an excuse letter until he found out that I was getting an A in PE. So when I started to consistently work out, my parents were cautious and worried. My mom tried to dissuade me but I'm incredibly stubborn. My dad recognized the need for it, saw the determination in me, and would from far away oversee my work-outs and show me lifting techniques.

running Another set-back that I experience is dealing with the ever changing hemoglobin. For the most part, in my day-to-day activities, I don't notice a difference in energy level between right before and after transfusion. The only way I know it's time for a transfusion is when I hit the gym. As my transfusion date gets closer, I'll notice that I'm slightly breathing harder, taking longer breaks between sets, or having more difficulty to lift the same weight compared to when I just get transfused. Sometimes I don't notice any difference. But when I do, I just adjust and allow myself that additional second or two to keep going. I never allow myself the excuse "I'll just not go today because I have transfusion in 2 days”. I have BAD days. There are days when I'm too exhausted and I am debating with myself if it is even worth going. Those are the days where I keep repeating to myself "It's better to have a bad workout day than to not work out at all". At the end of it, I'm glad that I went.

One more set-back that I'm dealing with is a weak right knee, which came about slowly over time. When I first started working out, I did not have any issues with my knees. But as I kept working out, I noticed that I was favoring my left knee. I've had scans to see if something was wrong structurally, but everything came out normal. So now, unfortunately, there are days when I'm at the gym and when I do isolated moves, my right knee feels weak and can't bear it. My trainers are well aware of this, ask me how my knee is for that day and will adjust the exercise if needed for me. It doesn't stop me from working out; it just means I have to do an alternative exercise.

Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3651   •   Fax: (510) 450-5647
© 2003-2012 Children's Hospital & Research Center Oakland
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