Category: Advocacy
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At Age 57, Retired American hurdler, Olympic Silver-medalist, and 4-time world champion in the 110-meter hurdles, Greg Foster, was diagnosed with AL Amyloidosis. Below, he recounts his long journey to finding a diagnosis.
In early 2016, I was diagnosed at the age of 57 with AL Amyloidosis. Just a couple of years prior, I remember simply thinking, “Wow, I must not be in as good of shape as I thought.” There had been a steep decline in my ability to do my usual cardio workouts. I was suddenly struggling to run half of a mile after being able to run five days a week and lift weights daily. In fact, the thought of seeking medical attention never crossed my mind.
My first trip to my primary care physician (PCP) was made after I experienced severe shortness of breath from walking up the stairs at home. It involved discussions of my family medical history, which includes heart failure in both my father and younger brother. Once my appointment concluded, my PCP immediately recommended and scheduled an EKG and stress EKG to take a deeper dive into how my heart was functioning. The doctor believed that the thickening of my heart muscles the hospital discovered were easily contributed to my extensive track record as an athlete – “Athlete’s Heart,” he called it. “Nothing to worry about,” he said.
By 2015, I spent two days in the emergency room due to severe stomachaches and more severe shortness of breath. Over the next few days, I had an EKG, blood work and saw a handful of doctors. The results indicated elevated protein levels in my heart, kidneys and liver, but the doctors told me they were not alarmed. I was referred to a hematologist, who determined there were no abnormalities.
In the months leading up to 2016, I had a cardiac catheterization, heart MRI and countless blood tests done for diagnostic purposes. At this point in my journey, I was still searching for answers.
In the beginning of 2016, my shortness of breath resurfaced and I noticed extreme swelling in my lower legs. Having never experienced fluid retention, I attributed it to standing all day and tried to ease the swelling slightly by elevating my feet each day. After nearly a month, I could no longer put shoes on and decided to see my PCP. During my visit, he noticed an elevated heart rate and had me walk around with a heart monitor to further investigate it. After the heart monitor showed a huge escalation in my heart rate, I was immediately referred to the hospital for additional evaluation and testing.
While at the hospital, I received an IV Lasix for the fluid retention and dropped nearly 20 pounds of water weight within 12 hours – from 230 lbs., the heaviest I’d ever been, down to 211 lbs. After another EKG, I was released from the hospital without definitive answers and scheduled to have my heart biopsied to collect tissue samples for testing.
Ten days after my heart biopsy, Dr. John Nash with the Mayo Clinic informed me that I had cardiomyopathy, a term used when the heart muscle becomes enlarged, thick or rigid. As the condition worsens, the heart becomes weaker and less able to function properly. In other words, it can lead to heart failure.
It had been a year and a half of doctors’ visits and testing, and this was the first time that it was more serious than “Athlete’s Heart.” This was the first time it was confirmed that I had heart failure.
My next trip to the Mayo Clinic involved more testing, blood tests, and fat pad and bone marrow biopsies to re-confirm the diagnosis. After a week or two of waiting for the final results, the Mayo Clinic determined I had AL amyloidosis.
That was the first time I ever heard the word amyloidosis. The very first thing I read when looking it up was: “There is no cure for amyloidosis.” To me, this sounded like a definitive death sentence – I was completely devastated.
I returned to the hematologist and had my first visit with my amyloidosis specialist, Dr. Keith Stockerl-Goldstein, shortly after. Once it was confirmed that I had AL amyloidosis, the doctor recommended I undergo chemotherapy and a stem cell transplant to destroy and stop the growth of the bad plasma cells in the hopes of reversing the damage to my heart.
I returned to the Mayo Clinic in June 2016 for my treatment. I spent a total of two weeks in the hospital undergoing treatment, which included chemotherapy and a stem cell transplant.
Today (June 2018), I am nearly two years post-transplant and there are no traces of the amyloidosis in my system.
While there have been no traces of the amyloidosis, I have unfortunately seen little to no change in my heart function and symptoms. I regularly experience shortness of breath, tightness in my chest, swelling in my lower extremities, nausea, weakness and fatigue.
I continue to receive lab tests every 2 months and visit my amyloidosis specialist every 4-6 months. I’m also prescribed a few different medications including: Lasix (every other day) and metolazone (once-weekly) to ease fluid-retention and “manage” my systems, as well as Doxycycline (twice daily) in the hopes of, according to some studies, keep the amyloidosis at bay and reverse the damage to my heart.
My perpetual symptoms have created a sense of fear of personal failure. While some days seem to be better than others, I have been experiencing feelings of depression and general sadness. Walking up the stairs and working out has continued to be difficult and watching what I eat and sodium/fluid intake is my only means of “control” and management. I haven’t been able to work back up to the way things used to be and haven’t been able to go back to work full-time.
While I’ve always been great at overcoming obstacles in life, this specific one has me stumped. I truly wish there was something I could personally do to increase my heart’s functionality and really get it to work the way it was meant to work.
At the end of the day, I try to think positively to the best of my ability instead of thinking about the uncertainty of the future. I try to focus on the things I have, such as the love and support of family and friends – if it were not for the generosity of my loved ones, I don’t know what I would do.
My journey has been one of great disparity, frequently knocking me down mentally, spiritually and physically. It truly has been a fight, but I’m in it to win it. I have cleared hundreds of thousands of hurdles over my lifetime and I hope to clear this one as well.
I would trade in some of my greatest achievements to go back to the old Greg Foster and the way things used to be. That alone would mean more to me than any accomplishment in the world.