Patient Stories
Interview with Huythong Nguyen
by Jin Mei
Huythong Nguyen
December 2016
Bio
Huythong has been a patient at UCSF Benioff Children’s Hospital Oakland for over two decades and has volunteered extensively for the thalassemia program. He recently became a Research Assistant for various studies in the Pacific Sickle Cell Regional Collaborative (PCRC) program.
JM: Let’s start with an introduction, where are you from?
HN: I was born in Saigon, Vietnam.
JM: When were you diagnosed with thalassemia?
HN: Soon after I was born, I became very sick and jaundiced. When I was 2 years old, I was diagnosed with E Beta Thalassemia and needed a splenectomy. Shortly after, I began receiving blood transfusions.
JM: When did you come to America?
HN: My family and I immigrated to the U.S when I was six years old and lived in Virginia. I had my treatments at Fairfax County Children’s Hospital. Later my family moved to Maryland and I was treated at the NIH (National Institute of Health) in Bethesda, MD.
JM: How did you end up in California and specifically, UCSF Benioff Children’s Hospital Oakland?
HN: The job I had in Maryland was changing its medical insurance policy and that posed a serious financial burden -- which was why I moved to California to find a new job. I also wanted a change of scenery. Before I moved, I asked my doctor at NIH for a referral in the Bay Area. I heard good things about Dr. Vichinsky and his team. Around that time, my ferritin level was over 9,000. I also have diabetes due to being iron overloaded; it is well managed now with the use of an insulin pump.
JM: Wow that is intense! How was your treatment as a result of that fact?
Huythong Nguyen
and Jin Mei, Thalassemia Outreach Coordinator
HN: I have blood transfusions every three weeks instead of four weeks. Before Exjade and Jadenu, Desferal was the only iron chelation treatment available. The medication was infused by a pump into you through a needle. The common area was your belly. It was definitely not fun.
JM: What were some of the obstacles you had to face with regards to the treatment?
HN: For Desferal, compliance was the biggest issue. No one wants to be poked with a needle and leave it in for 10-12 hours for the medication to infuse, 7 days a week. It was really uncomfortable. With Exjade, time is the issue. I feel it is inconvenient to wait an hour for medication to dissolve in water before I can drink it. Jadenu is now available as a blue pill…(not that blue pill). It’s a few tablets to take every day, just like your other medications.
JM: How has thalassemia affected your personal life while growing up?
HN: I strongly believe living my life with thalassemia rather than having my life revolve around thalassemia. Having said that, it was definitely difficult balancing school, then work and going to college, and Thalassemia treatments. The financial aspect of thalassemia is also very costly. Without a good insurance coverage plan, my parents would have to pay thousands of dollars just on medication -- not to mention blood transfusions, lab tests, etc. Having Thalassemia adds an extra layer of responsibility. I feel being healthy is more important than having fun at times.
JM: Besides being a patient, what else have you been involved in with UCSF Benioff Children’s Hospital Oakland?
HN: I was the Patient Travel Coordinator on the Tircon study. I assisted on other studies as a Study Coordinator. I’m helping you with the outreach projects. I volunteered for TAG (Thalassemia Action Group) years ago, which was an organization run by patients and focused on patient services. We would organize a national annual conference for all thalassemia patients and their families to share the latest information regarding the treatment of thalassemia. I was the Treasurer and the Editor for the TAG Newsletter. Honestly, I enjoyed my experience with the TAG members. It was a great way for patients, siblings, and families to connect and to know that they are not alone with this disease. I am so thankful to the founding members of TAG for their dedication.
JM: Thank you for this interview!
HN: Thank you.
