On the outside, Amy is a bubbly 24-year-old girl who charms you with her infectious smile and sense of humor. Look a little deeper, and you’ll find a girl with tremendous courage who has battled the challenges of diabetes since the young age of 2.
After years of regular visits to the hospital, the additional diagnoses of fibromyalgia as well as neuropathy and attempts at nearly every pain management treatment under the sun, Amy’s story gives a glimpse of the resolve it takes for many to overcome any and all obstacles for a more normal life.
In one of her recent video blogs, Amy challenges the notion that diabetics can lead a ‘normal life’ despite the presence of this disease. She says:
“Sure, because ‘normal’ is giving yourself 4 shots a day, testing before every meal, writing down everything you eat and counting carbs… For a diabetic maybe that is normal, but how can you do that and lead a ‘normal life’? What’s normal about being the kid at the birthday party that is like, ‘Oh wait, stop… don’t blow out the candles and don’t cut the cake yet because… I have to test myself.’”
Amy says she has wrestled with this idea of normalcy for many years, so much so that when she hit her sophomore year of college things got out of hand.
“I have struggled with diabetes for… ever. Going to college, being there and trying to be a ‘normal student’ while also living with diabetes was really hard, and I went through what they call diabetes burnout which is where you just get burnt out after having dealt with it for so long,” says Amy. “I simply didn’t deal with it. I wasn’t denying I had it, I just didn’t want to deal with it anymore.”
“I didn’t test. I would guess on getting my proper insulin dosage. I wasn’t eating. I was never hungry because of my blood sugar, so I weighed about 80lbs. I was always a good student and was so focused on school and friends that my diabetes just fell by the wayside. I was very angry at myself for a long time. I’m a very controlled person. I excelled in so many things but the diabetes was really difficult for me.”
A Frightening Wake-Up Call
Amy recalls when her condition took a turn for the worse during her time in college, a rude awakening which changed her life forever.
“I was 19, a sophomore in college and really out of control with my blood sugar—just not taking care of it. One day my feet swelled up. I had persistent, horrible pain.” She then went home to Florida for spring break and was admitted to the hospital where she stayed for a month and a half and was diagnosed with neuropathy.
Typically, neuropathy is common among older diabetics but young Amy was at risk due to her blood sugar being so out of control at that stage of her life. This frightening diagnosis threatened what shred of ‘normal’ she had left in her life, and her daily routine changed drastically.
“I couldn’t sleep with a blanket and it was really hard to have anything on my feet. I had to shake the bed to distract myself from the pain. My life consisted of sitting in bath tub for 6 hours a day running water over my feet,” Amy explains.
When Amy found Okyanos, she was searching for anything that might offer her a healthier, more normal life. “I tried all different types of pain management from distraction to meditation, biofeedback, physical therapy and medications. I got it to a point of manageability where I was ‘functional’ but still had really bad flareups. It was never gone, always somewhat there.”
Amy’s Decision to Come to Okyanos
With the help of her sister, Amy was able to fundraise a significant portion of the cost of her cell therapy. Still, despite the excitement and hope Amy felt, she admits she still had fears and apprehensions about the experience.
“When people hear that you’re doing a medical procedure and you have to go to another country, their guard is automatically up. Sometimes they think you’re going to some chop shop, but my doctor was extremely encouraging and really interested,” she says of her decision to undergo cell therapy.
Amy, who also has fibromyalgia, says she often feels uncomfortable in conventional hospital settings, “I’ve been in a lot of hospitals. In fact, I have kind of a fear of hospitals—I’ve met many staff who were overworked and unkind. The people at Okyanos were above and beyond to the point where when Nurse Stephanie called me to follow up, it felt like an old friend.”
She elaborates on her experience at Okyanos and on the day of the procedure:
“I looked at the website and read about it all. Nothing could prepare me for how genuinely nice the facility was, from the waiting room to the operating room and the fact that they picked me up and came to my hotel room to check on me. Everything was just really well thought out from the moment I got off the plane to when I came out of surgery.”
“The doctor was great. I was really nervous and he was totally accommodating; he made me feel at ease and comfortable by explaining everything. He even let me see my actual stem cells. Everything was super well explained and when it came time for the procedure I didn’t feel any doubts whatsoever. It was great.”
Life After Cell Therapy
Having gone into this experience with some hesitation and a set of expectations, Amy says she couldn’t be happier with her results.
“I can now sleep with a blanket. I don’t shake the bed the entire night. My feet aren’t a constant thought in the back of my mind anymore. The other day, it was about 4pm and I thought, ‘I haven’t thought about my feet once today,’” she shares.
Amy also says Okyanos doctors told her to be on the lookout for some seemingly insignificant things one wouldn’t expect. “My hair is fuller since treatment, which was completely unexpected!”
Amy’s post-cell therapy successes are seen from a couple different angles. In addition to changes in her daily life, perhaps the biggest win came when Amy saw her doctor a few weeks after treatment. After a regular checkup, they discovered Amy’s A1C levels were significantly lower.
“My doctor at home hadn’t ever dealt with this kind of situation before. I think what really blew her mind was the fact that my A1C has gone down so much. Before surgery I was at 8.9, now I’m at a 7.8. I haven’t been that low in years.”
“I am taking less insulin than I was before, and I just feel better. I don’t know how else to put it. I wake up in the morning and I just feel better, which is a big deal when at 24 years old I was feeling like an 80-year-old. I’m not totally there but I am vastly better.”
Amy’s Advice to Patients Like Her
Amy’s challenges in life thus far offer one advantage to those around her—she now has a wealth of experience to draw from. She says she intends to help others going through similar struggles.
“I had this mindset before I went in… I didn’t go in thinking it was going to be a cure. The doctors at Okyanos were great about talking to me about it and telling me the same thing. I just wanted betterment, and that’s exactly what I got. I was to the point where I thought nothing would make me better. But this did make me better, and that in itself is a miracle.”
“Living in America, there’s some confusion surrounding stem cells, but what it took for me was more research into it. The fact that it couldn’t hurt, it’s from your own body and there’s very minimal risk means what you could potentially gain would far outweigh the risk many times over.”
“Sometimes you find those who are concerned about facilities outside of the US. I thought, ‘You want me to fly to the Bahamas, fix my problem and put me up in a nice hotel on the beach? How could I say no!?’”
“People need to open their minds. Once you open your mind, you never know what the possibilities are.”
An Update From Amy 1 Year Post-Treatment
“On Aug. 1st I played soccer with my cousins at my grandmother’s 90th birthday party. Yep—SOCCER. I am thinking of joining an indoor intramural team with co-workers starting in September. I used to play before my hospital stint and to think that I could actually kick a ball again is simply amazing.”
To learn more, you may contact a Patient Liaison to request a free educational consultation or dial 855.OKYANOS (659.2667).