Patient Interview: John Zuke and the Importance of Physical Fitness
June 7, 2011 – Physical fitness is important for all individuals, including those with thalassemia. Some individuals with thalassemia have a difficult time keeping fit, for a variety of reasons – lack of time, lack of energy, concerns about how a fitness regime can affect them, etc. John Zuke is an individual with thalassemia who recently became interested in getting in better shape and is now studying to become a personal trainer. Below, CAF talks with John about his personal experiences with fitness.
(Please note: John discusses the specific programs he has used to get in shape. CAF supports good physical fitness for all people but is not endorsing any one specific program or method. CAF also recommends that individuals consult a physician before making any major changes in their fitness profiles, especially if they have cardiac issues.)
CAF: Let’s start with the basics. You’re 38 years old and live in Florida. How long have you lived there?
JZ: I moved to Orlando, Florida from Warren, Ohio 14 years ago at the age of 24.
CAF: What is your thalassemia diagnosis? How old were you when you were diagnosed?
JZ: Beta thalassemia major. I was 4 years of age when diagnosed.
CAF: You’re married. Do you have any children?
JZ: Yes. My wonderful wife Jocelyn and I have two fantastic little boys. One is three years of age and the other is three months of age. Many in the thalassemia community may think it was odd for me to wait until the age of 35 to have a child, but I had spent the previous 16 years of my life attending college, establishing my career and traveling. Jocelyn and I were both married at the age of 26. Originally I did not want children due to the following reasons, one of them being that I was labeled as having a fatal illness (I will discuss my disdain for such terminology in a bit.) I was so fearful that I would die and my children would be stuck without a father.
Additionally I had to find out how to go about getting my wife tested to see if she was a carrier so that we would not transmit thalassemia major to our children.
The last reason is that I was worried about transmitting any infectious diseases that I could potentially have (but didn’t). I had such a paranoia about infectious disease, so I had not been tested for HIV or hepatitis for a very long time. This was very selfish of me and unfair to my wife, although she was well aware of my lack of testing; however, she always supported my feelings and never questioned them. As you can see, I matured, followed through and got tested with great results, both genetically and pathologically speaking. And we now have two very wonderful boys!
CAF: At what hospital are you regularly treated? Do you get your annual comprehensive care exam there, or do you have a relationship with another thalassemia treatment center for that?
JZ: I am treated at MD Anderson (Cancer Center) of Orlando Regional Healthcare. Occasionally I travel to Oakland, California to see Dr. Singer for a comprehensive evaluation. There is no desire by any adult hematologist that I have encountered to follow the guidelines set by people who treat a traditionally pediatric illness. I have presented the treatment guide to many of my past adult hematologists who haven’t followed it. If it wasn’t for having Dr. Susan Shurin (current President of NHBLI) as my pediatric hematologist in Cleveland, Ohio as a child, I would have been entering adulthood as a very misguided thalassemic. Therefore I HIGHLY recommend regular comprehensive treatments at one of the regional centers all through childhood. This is extremely, extremely critical and will benefit them in adulthood.
CAF: Are there other thalassemia patients in your area, or are you pretty much the only one (that you know of)?
JZ: I have met a couple over the years, but none that I have kept in contact with. They were unfamiliar with current treatment protocols. I referred them to TAG and CAF, but I don’t know if they ever followed through.
CAF: I know you have a degree in anesthesiology; are you currently employed in that field?
JZ: Yes, I have a Master of Science in Anesthesiology as a Certified Registered Nurse Anesthetist (CRNA). I have been practicing as a CRNA for 7 years. It is a great profession of which I am very fortunate to be a part. Prior to that, I was an RN for 11 years in PCU and Cardiovascular ICU.
|“I am more fit than when I was a child.”|
CAF: Okay – so let’s talk about your interest in physical fitness. First, how did this come about? What led you to think about doing something to increase your fitness?
JZ: Well, I knew I needed to get my metabolism up to speed as I reached the age of 35. This is kind of a funny story: at the age of about 18, I was playing an outdoor game of basketball, running up and down the court, which caused me to go into a rapid heart rhythm called SVT. I went to the ER and this ended up resolving itself. At that time I was told not to exert myself so hard. So a decade goes by and I haven’t done squat, because I was scared that I would go into SVT or have a heart attack, etc. To make a long story short, I became an adult and didn’t take care of myself physically. It was my perception that as long as I took care of myself medically, that I had nothing to worry about. WRONG! Along comes adulthood and I start getting fat, hypertensive and extremely tired. Oh my God, adult maladies!!! I got a gym membership, did periodic workouts and still ate like a pig. I knew that I needed to get into shape, but I didn’t have the right resources or knowledge, even as a healthcare professional. And so comes along the late night P90x infomercial. The rest is history.
CAF: What exactly are you doing and how long have you been doing it?
JZ: I have been doing P90x for over a year. P90x is an extreme home workout system that requires very little equipment. Each day is a different workout. These workouts include resistance training, cardio, yoga and stretching. Each month the routines change so that you do not reach a plateau and your muscles don’t get used to the exercises. Thus, the program works by “muscle confusion.” My exercise capacity was terrible when I first started P90x, so I had a couple of failed attempts lasting a couple of weeks before I reverted to the program’s easier precursor, which is called Power 90 or P90. After d
oing the easier Power 90, I went on to the extreme version called P90x. Now I have completed three rounds of P90x. Tony Horton is the trainer that came up with P90x. I credit him and Beachbody for helping so many people lose weight and get into shape. Tony is very motivating and influential. His motto is “Do your best and forget the rest.” He promotes the modification of exercises to meet individual needs.
The company that produces P90x is called Beachbody. As I made exercise a part of my lifestyle and started to see amazing results, I signed on as a Team Beachbody coach. A Team Beachbody coach is not a fitness expert, but is someone who helps others get fit and eat right using Beachbody’s exercise programs. It is a great way to help others while earning an income. Our mission is to end the trend of obesity across America. Becoming a coach was a very low cost endeavor, which helped me maintain accountability for my workouts and allowed me to reach out to others that have tried so many fad diets or bought gym memberships with very little success.
CAF: Did you consult with a doctor before you began your fitness lifestyle? What did s/he have to say? Did s/he have any concerns that were related to thalassemia?
JZ: I did not consult a physician, because they will always err on the side of caution to protect themselves. I was already told that I couldn’t scuba dive, but did it anyhow with success. I would have never met the challenges in life if I listened to what everyone else thought that I should or shouldn’t be doing. That goes for my parents, physicians, teachers, friends, etc. I did know my limits however.
But I certainly don’t advocate ignoring advice from physicians, etc. If you have cardiac issues, you should certainly seek the consultation of a cardiologist. Also, when doing any cardiovascular exercise you must wear a heart rate monitor and not exceed your appropriate heart rate. When starting out, you shouldn’t be more than around 70% of your maximum heart rate if you haven’t done any exercise for a while. That is called a stress test and should be performed by a cardiologist. I have become fit enough to maintain my heart rate 85-90% of my maximum.
Please follow your trainer or physician’s advice. I am not a personal trainer, although I am studying to be one now. When starting any program, know your limits and start slowly. Just show up and do your best. Programs like P90x are extreme and very difficult. I can recommend lighter programs to start on with for someone just getting into fitness.
|“Proper nutrition is 60% of any workout program.”|
|To view a webinar on “Thalassemia & Nutrition,” click here.|
CAF: As you know, many people with thalassemia experience some low bone mass issues. Is this something about which you yourself need to be concerned?
JZ: I think that my last bone density scan in 2008 showed slightly lower bone mass. I started these programs around 2009. I have been routinely taking calcium supplements. Resistance training is an excellent way to help prevent osteoporosis; however, you must know your limits. As long as you are showing up and doing your best without injuring yourself, that is more activity you have done than if you didn’t show up at all. Start off with light weight until you learn how your body responds and use proper body mechanics.
There is so much stretching and yoga in the Beachbody programs that has been extremely beneficial.
CAF: What kind of changes have you seen since you started this program?
JZ: I have lost 30 pounds and I have less than 10% body fat. I am more fit than when I was a child. It’s actually unbelievable and quite phenomenal. I am also more flexible than I have ever been. Using yoga from P90x, I have gone from not being able to reach beyond my knees to almost touching my toes. I have about two inches to go.
CAF: What are you ultimate goals with your fitness program?
JZ: This is funny. My initial goal was just to lose weight, then my goal was to complete P90x, then my goal was to get six-pack abs. (This is a tough one, but I am almost there). Now I really want to build serious muscle, but my ultimate goal is to continue to exercise 6 days per week. I never in a million years thought that I would be making this my lifestyle.
CAF: In addition to exercising, have you altered your diet as part of the program?
JZ: Absolutely! Proper nutrition is 60% of any workout program. If you are not eating properly, then you will not lose weight or have the energy to complete your workouts. I eat six times per day, mostly lean meats, veggies and complex carbs. One thing that has drastically improved my diet is Shakeology (http://myshakeology.com/johnsfitquest). This meal replacement is so nutrient dense with few calories that is essentially the healthiest thing that you can consume. It contains ingredients such as Acai, pomegranate, camu-camu, Yacon root, and green tea, as well as many other probiotics, and antioxidants. It also contains protein. Shakeology was recently mentioned in Oprah magazine as they traveled around the world to find the ingredients. It does contain 4mg of iron per serving, however. It hasn’t been a factor in my ferritin studies.
|“Once I learned how to live instead of die, I discovered that I could be much more.”|
CAF: Some people with thalassemia have cardiac issues that may cause them to be concerned about a rigorous exercise program. Are there exercises/programs you would recommend that take this into account?
JZ: I am hesitant to recommend any workout program to someone with a cardiac history (especially people who take beta blockers, etc.) without them speaking with their cardiologist. My recommendation to someone with a cardiac history is to, first of all, always wear a heart rate monitor when doing cardiovascular routines.
One thing that I like about Tony Horton is that he explains how people get hung up on their appearance or keeping up with the people in the workout videos. He states that you just have to keep moving. Get outside, play with your dog, and go to the park, move your legs, move your arms. This will achieve more than sitting on the couch or lying in bed any day of the week. Also, good stretching or yoga helps with flexibility and burns calories. These low intensity activities will help tremendo
usly, if you cannot exert yourself due to cardiac issues.
CAF: What else would you like to share?
JZ: I must explain my disdain of the very old classification of thalassemia as a fatal disease, especially with today’s knowledge. Yes, we have lost many from thalassemia, but to strip away the hope and aspirations of people who want to be normal is so unfortunate. It took me many painful and hopeless years to actually realize that I was not destined to a life of an invalid that could not live a full, productive life; and to realize that my life was not going to the end the way others perceived or expected. Once I learned how to live instead of die, I discovered that I could be much more. Thalassemics, or anyone with a chronic illness, could be even greater than the average “healthy” person once they got rid of the garbage in their heads that has been passed on by others. I don’t believe anyone with thalassemia major should think of himself or herself as having a fatal illness. Old textbooks, old terminology. Have your children, live your dreams.
One of the most amazing things is that at the age of almost 39, I have seen “healthy” people eat poorly and become obese. I always worried about death and dying, but now I come across patients having gastric bypass surgery or other procedures. I see their health history and the fact that they are slightly older than me and on MORE medications. My final note is that all thalassemics must take care of themselves. Although thalassemia may never go away in our lifetime, you can rest assured knowing that you did everything to live a healthy fulfilling life. You didn’t let thalassemia dictate how you live. When entering adulthood, do not forget about the other things that you need to watch for such as diabetes, hypertension and obesity.
One thing that I wish I realized as a child is that there is more to John Zuke than thalassemia major.
Feel free to check out my blog and Beachbody page: http://johnzuke.blogspot.com; http://beachbodycoach.com/johnsfitquest