Thanks for sticking with me! In this entry, Iâ€™ll be talking about what is involved in being your own advocate. I believe that for myself, I would not be alive to write to you now had I not realized that I am in charge â€“ not the professionals whose help I seek.
Initially, I looked for information at my local library. Everything I found on the subject was brief and grim. Eventually, I found a small online support group. We were all in the same boat: we didnâ€™t have knowledge of our disease, how to treat it, or who could help us. In comparing our situations we began to pull together some of the answers. As the support group grew, we even developed an internal list of the doctors we trusted. [...]
Fifteen years ago, Elmo Aquino, a resident of Orange Park, Florida, was an avid runner. Heâ€™d competed in Jacksonville's Gate River Run, an annual 15-kilometer running event, several times. But one morning in the summer of 2001, his active lifestyle came to an abrupt end when suddenly, while on a treadmill, he found he couldnâ€™t run.
â€śI knew something was wrong, because I was used to running,â€ť recalls Elmo, now age 43. He knew he needed medical treatment. â€śI could have gone to some of the other hospitals,â€ť he says. â€śBut with Mayo Clinic here in town, it was a no-brainer for me.â€ť
Elmo was diagnosed with dilated cardiomyopathy â€” a condition in which the chambers of the heart become enlarged â€” and he ended up in the intensive care unit. Thatâ€™s where heÂ first met Daniel Yip, M.D., medical director for the Heart Failure and Transplant Program at Mayo Clinic in Jacksonville, Florida.Â [...]
For Stuart Baker, flying was life. After beginning his career as a flight attendant, Stuart eventually earned a pilotâ€™s license and flew for a major airline. But by age 40, this native of Winchester, Virginia, had torn his right rotator cuff twice, grounding his ability to fly.
It took seven years, three surgeries and extensive rehabilitation for Stuart to recover use of his right arm. Then, he damaged his left rotator cuff. But thisÂ time, he found Mayo Clinic.Â [...]
Iâ€™m writing this blog series to help others by giving you a glimpse into how I have been impacted by myelofibrosis yet still consider myself to be blessed with a very happy and fulfilled life. If you are a fellow patient, perhaps you have learned much of what I have along the way. If you are recently diagnosed, some of the things Iâ€™ll relate may be new to you. My hope is to share a few helpful new ideas with you regardless. [...]
Michael Tyler and William Tiger didnâ€™t know one another before the summer of 2016. But they now share a unique life event. Both 55-year-olds underwent heart transplant surgery at Mayo Clinicâ€™s Arizona campus on the same day, at the same time. Completing the simultaneous procedures was a milestone for the Transplant Center team in Arizona, who had not previously been called on to perform more than one heart transplant at a time.
â€śIt was truly remarkable how the team came together,â€ť says transplant coordinator Allison Smith, who said the offers for both hearts came in on a Friday afternoon. Extensive coordination and precise timing were crucial to providing the best possible outcomes for the patients.
â€śWhen we all came in on Monday morning and knew the patients were doing well, it was like a euphoric high,â€ť she says.Â [...]
George Hoggard knows a thing or two about the importance of a rapid response. A former firefighter, the 78-year-old Titusville, Florida, resident spent the better part of his 42-year career teaching astronauts at the Kennedy Space Center how to escape to safety in the event of an emergency on the launch pad. He also was a member of the rescue team that would respond if something went wrong with a space shuttle mission.
So when his right eye suddenly began looking left while watching TV on a Sunday evening in April 2016, George knew something was amiss. When he began feeling nauseated, he told his wife, Rita, he needed to get to the hospital.Â [...]
For 14 years, Brad Lewis never knew quite what to expect when he woke up in the morning. A rare genetic disorder, tuberous sclerosis, caused a variety of health problems. But the one that disrupted his life the most was epilepsy. At one point, Brad was having as many as 80 seizures a day.
â€śSeizures are so unpredictable. If Brad wasnâ€™t having a seizure, he was worried about having a seizure,â€ť says his mother, Bernadette Lewis. â€śIt affected every minute of his life, whether he was at school, with friends or at home.â€ť
Brad was also dealing with other complications from his medical condition. After trying many medications and going through multiple surgeries, Bradâ€™s parents decided they needed another expert to weigh in on the situation. That brought the family to Nicholas Wetjen, M.D., a physician in the Department of Neurosurgery at Mayo Clinic in Rochester, Minnesota.Â [...]
When Tammy Bolerjack was diagnosed with cystic fibrosis at age 18, she found herself frequently in and out of hospitals for treatments to help her breathe. Running 5K races and half-marathons certainly wasnâ€™t something she envisioned in her future. Little did she know then that eventually a double lung transplant at Mayo Clinic's Florida campusÂ would not only allow her to breath normally, but would motivate her to become a fitness enthusiast and a competitive runner.Â [...]
Karen Safranek didn't take a worry-free step for 10 years. Severe peripheral neuropathy â€” a side effect of breast cancer treatment she received in 2002 â€” left her with constant burning, tingling, numbness and pain in both her feet.
Over time, Karen tried dozens of treatments to rid herself of the discomfort. Nothing worked. So in 2012 when she found out about a clinical research trialÂ available at Mayo Clinic for people who had peripheral neuropathy after chemotherapy, she was interested, but not optimistic.
"I tried so many things. Anything a doctor recommended or heard about, or anything I heard about, I'd give it a try if I could," Karen says. "But years past, and the pain didn't get any better. By 2011, life was not good. I was analyzing my house to figure out where we could put a wheelchair ramp. At that time, I thought it wouldn't be much longer before I couldn't walk anymore."Â [...]
When Richard Oppelt arrived at Mayo Clinic's Rochester campus in early 2001, his lung capacity was minimal â€“ only 21 percent of what it should have been.
A sandblaster for 24 years, Richard, from Melbourne, Florida, had developed silicosis, a lung disease caused by breathing in silica dust, which can damage the lining of the lung air sacs, and cause scarring and stiffening of the lung, making it difficult to breathe.
"When talking with someone, I would have to take a break to catch my breath," Richard says. "I was so short of breath sometimes that my wife had to finish my sentences. I also had a hard time making it up the stairs in my house without stopping several times."
The night before 8-year-old Evie McLeishâ€™s brain surgery, her Mayo Clinic neurosurgeon David Daniels, M.D., Ph.D., told her parents, "I donâ€™t want you to think of this as the end. This is just the beginning of a marathon."
The procedure was the start of Evieâ€™s long-term care plan for treatment of a brain tumor. Along with the brain surgery, that plan included chemotherapy and radiation therapy. Due to her age and the location of her tumor, though, her doctors recommended Evie receive proton beam therapy instead of conventional radiation therapy.
The timing was right. Mayo Clinic had just begun a new Proton Beam Therapy Program at its Rochester, Minnesota, campus. And not only was this unique treatment readily available to Evie, it was relatively close to her familyâ€™s home in Ankeny, Iowa, just a three-hour drive away.
"We were dealt a big blow with Evieâ€™s tumor," says her mother, Ali McLeish. "But there have been silver linings in this whole thing, including that we could get proton beam therapy without having to travel across the country."Â [...]
Jennifer GutmanÂ callsÂ the day doctors diagnosed her youngest son, Lucas, with hypoplastic left heart syndromeÂ the worst day of her life. The severe heart defect, sometimes referred to as HLHS, was uncovered during what Jennifer and her husband, Brian, thought would be a routine ultrasound.
The startling news broughtÂ immediate fears for Lucasâ€™ future.
DeterminedÂ toÂ helpÂ Lucas, Jenniferâ€™s sister-in-law, a physician, reached out to medical colleagues for advice. One of the phone calls she made led her to Timothy Nelson, M.D., Ph.D., at Mayo Clinic in Rochester, Minnesota. Connecting with Dr. Nelson and his team has made the long-term outlook for Lucas and his family considerably brighter.Â [...]
Over the last two decades, however, health concerns have made his outdoor activities more challenging. During that time, Roger has undergone hip and knee replacement, been diagnosed with prostate cancer, and faced additional health issues related to his heart and lungs.
Medical care from his team at Mayo Clinic Health System, along with support from a large circle of family and friends, have seen him through each of these obstacles. And in October 2014, a new feature was added to the mix when Mayo Clinic Health System Palliative andÂ Supportive Care ServiceÂ became part of Rogerâ€™s care team, too.Â [...]
Growing up in Central Florida, Kimberly Kimmons was an active child. She loved swimming, biking and martial arts. But at age 12, Kim was diagnosed with scoliosis, a sideways curvature of the spine that most often occurs during a growth spurt before puberty. Unfortunately, Kimâ€™s family didnâ€™t have the resources to fully address her spinal issues, and the scoliosis continued to get worse.
Years later, when Kim and her husband, Kent, searched for specialists to help fix her back problems, they found neurosurgeons at Mayo Clinicâ€™s campus in Jacksonville, Florida, who were confident they could help. But as they assessed her condition, Kimâ€™s care plan became more complicated. In the end, she had three surgeries at Mayo Clinic to remedy back and neck issues. With time and recovery, Kim was able to reclaim her life.Â [...]
It was 2012, and Beth Spreitzer was busy with life. Mothering her fourth-grade daughter and taking care of a household left no time to get sick. However, after experiencing what she thought were too many common symptoms â€“ fatigue, chills, fever â€“ and not improving, Beth thought something else must be wrong.
"In the past, the most I'd ever have to fight off was a cold. I attributed my recent symptoms to being busy and getting older," Beth says.
During a routine visit, her gynecologist noticed her thyroid was inflamed and tender to the touch. This butterfly-shaped gland rests in the bottom of the neck, around the windpipe. It has two side lobes that you can't feel when the thyroid is its normal size. The gland secretes hormones that regulate heart rate, blood pressure, body temperature and weight.
Her doctor asked if she'd been sick. Beth confirmed that yes, she suffered from a fever and chills a couple of weeks earlier and even had a cold sore, which for her was uncommon. But she admits she didn't think much about the conversation afterward.Â [...]
As senior captain of her high school volleyball team, Brooke Johnson was determined to lead her squad to the state tournament. Never mind that the team hadnâ€™t made it there before. Or that her small school had never sent any athletic team to a state tournament. Or that Brooke had health issues that made playing a challenge. Not even that she required extensive hip surgery four months before the season started. None of that mattered to Brooke.
â€śI was convinced we could do it,â€ť she says. â€śThatâ€™s what I was working toward, and I refused to give up.â€ť
The obstacles in her path were significant. Her team at Mayo Clinic in Rochester, Minnesota, worked with Brooke, though, to see her through to her goal. And in November 2015, her Heritage Christian Academy volleyball team made its first appearance in the Minnesota state high school tournament, earning third place overall.Â [...]
When she was a teenager, Sharon Mills started having excruciating pain after eating. Medical tests found abnormalities with her liver but no reason for the irregularities or pain. She continued to experience the troubling symptoms for decades.
As an adult, Sharon moved to different parts of the country several times. With each move, she visited academic medical centers and underwent a wide variety of tests and procedures in hopes of uncovering a reason for her pain. No one could give her an answer, until she moved to Jacksonville, Florida.Â [...]
When Gene Franke left his farm in rural Hayfield, Minnesota, driving a semi-trailer truck loaded with hay and bound for Oklahoma, he never imagined the return leg of his journey would be as a passenger in an air ambulance jet. But in September 2011, thatâ€™s exactly what happened.
A serious accident left Gene paralyzed and in critical condition. Doctors in Oklahoma didnâ€™t think he would survive. Longtime patients of Mayo Clinic, Gene and his wife, Barbara, were determined to get him back to Mayo's Rochester, Minnesota, campus for care.
â€śThe doctors at Mayo Clinic knew what was going on, and they assured us they could do something for him,â€ť Barbara says. â€śWe knew he had to get up here. The care at Mayo Clinic is like nowhere else. Weâ€™re used to it, and thatâ€™s what we wanted.â€ťÂ [...]
I struggled for years with extreme fatigue, major skin problems, muscle weakness, escalating eye issues, and a host of other unexplained symptoms. I moved to Georgia with more and more symptoms. I developed relationships with new doctors and developed new symptoms â€“ seizures and heart-related syncope. I went to see a neurologist, who began to run tests. In the meantime, I had regular quarterly blood panels by my regular physician, who upon reporting to me by phone noted no irregularities. I was told time and time again to stop chasing a diagnosis. My family continued to watch my decline.
After running numerous tests, my neurologist could only ascertain that I may have had some mini-strokes. My neurologist referred me to a major university hospital.Â After two visits, and being practically laughed out of the place, I began to have serious doubts about my symptoms and began to believe the many specialists and psychologists who told me it was emotional response.Â [...]
Each year after their big Thanksgiving meal, Tess Wilson's family has a tradition of playing games in a gym to burn off some calories. For much of her high school and college years, Tess spent that afternoon sitting on the sidelines watching the rest of her family run around. Severe, chronic pain made it impossible for her to join in the fun.
Thanksgiving Day 2014 was different. On that day, Tess was in the thick of the action. She played capture-the-flag, hide-and-go-seek, soccer and tag.
"I was incredibly sore the next day, but not in a chronic pain way," she says. "I just used muscles that I had forgotten were there."
The change came as a result of Tess' participation in a aÂ clinical research trialÂ at Mayo Clinic that studied the effects of a new treatment for chronic nerve pain, called scrambler therapy. After two weeks of the therapy, Tess found relief from the constant pain that had been plaguing her for five years.Â [...]