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Aug 26, 2011 by @susanashephard · View  

Living With Myelofibrosis (Part 3 of a 4 part-series)

Patricia Wagnerby Patricia Wagner

Thanks for sticking with me! In this entry, I’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 – 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 didn’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. [...]

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joseph roche responded 3 days ago · View

My husband has been diagnosed with mylelofibrosis and I am scared out of my mind, he started the pill jakafi and we had to stop it dropped his platletts into lower 20 had to have 4 units of blood and plazma...been looking for food to feed him any help and advice we have read your 1 and 2 he is walking and moving....and its hard because as you know sooo tired...please help we are suppose [...]

Edited: 08/23/2016 @ 1:52pm


nicholas responded 1 day ago · View

Slowly reduce your jakafi.

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Fri, Aug 12 at 4:27pm CDT by @SharingMayoClinic · View  

Life Beyond A Heart Transplant is Vibrant and Full for Elmo Aquino

For years, Elmo Aquino dealt with persistent heart problems that eventually led to a heart transplant. Since then, he’s moved forward and has been thriving, both personally and professionally.

Fifteen years ago, Elmo Aquino, a resident of Orange Park, Florida, was an avid runner. He’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 couldn’t run.

“I knew something was wrong, because I was used to running,” recalls Elmo, now age 43. He knew he needed medical treatment. “I could have gone to some of the other hospitals,” he says. “But with Mayo Clinic here in town, it was a no-brainer for me.”

Elmo was diagnosed with dilated cardiomyopathy — a condition in which the chambers of the heart become enlarged — and he ended up in the intensive care unit. That’s where he first met Daniel Yip, M.D., medical director for the Heart Failure and Transplant Program at Mayo Clinic in Jacksonville, Florida.  [...]

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mrauto58 responded Sat, Aug 20 at 12:09am CDT · View

where I do feel great for this gentleman and his family I just lost my wife due to the same condition she was 56 we were on the list for 6-7 years she did ok than 2 years ago we got the lvad put in went for our 2 year ck up was ok did some adjusting which is billings Mt and we went to the mayo in Minn. Two days after getting home she [...]

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Wed, Aug 17 at 7:49am CDT by @SharingMayoClinic · View  

After Severe Rotator Cuff Injuries, Stuart Baker Found Relief at Mayo Clinic

StuartBaker805For Stuart Baker, flying was life. After beginning his career as a flight attendant, Stuart eventually earned a pilot’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 this time, he found Mayo Clinic.  [...]

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Aug 22, 2011 by @susanashephard · View  

Living With Myelofibrosis (Part 1 of a 4 part-series)

Patricia WagnerI’m Patricia Wagner. I’m 58 years old and live in a retirement community with my husband and two cats. I’m now followed by Dr. Ruben Mesa, a hematologist at the Mayo Clinic in Scottsdale.

I’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 I’ll relate may be new to you. My hope is to share a few helpful new ideas with you regardless. [...]

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Sundwn01 responded Tue, Aug 16 at 11:54pm CDT · View

Looking for parts 3 and 4

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Tue, Aug 16 at 10:57am CDT by @HoytFinnamore · View  

Coordination and Teamwork Make Simultaneous Surgeries Seamless for Heart Transplant Recipients

WilliamandMichale805Michael Tyler and William Tiger didn’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 Clinic’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.

“It was truly remarkable how the team came together,” 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.

“When we all came in on Monday morning and knew the patients were doing well, it was like a euphoric high,” she says.  [...]

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Thu, Jun 30 at 10:22pm CDT by @SharingMayoClinic · View  

Quick Access to Stroke Experts Through Telemedicine Makes All the Difference for George Hoggard

GeorgeHoggard805b 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.  [...]

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Fatik Qudsi responded Sat, Aug 13 at 3:00am CDT · View

Thanks to Mayo Clinic for speaks clearly . Walks. Used hands . Good.

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Tue, Aug 9 at 8:13pm CDT by @SharingMayoClinic · View  

Surgery to Get Rid of Seizures Gives Brad Lewis New Freedom

After years of taking medication for persistent seizures, Brad Lewis had surgery at Mayo Clinic to eliminate them. Five years later, he remains seizure-free.
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.

“Seizures are so unpredictable. If Brad wasn’t having a seizure, he was worried about having a seizure,” says his mother, Bernadette Lewis. “It affected every minute of his life, whether he was at school, with friends or at home.”

Brad was also dealing with other complications from his medical condition. After trying many medications and going through multiple surgeries, Brad’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.  [...]

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Fri, Aug 5 at 5:04pm CDT by @SharingMayoClinic · View  

Double Lung Transplant Recipient Beats Cystic Fibrosis to Become A Running and Fitness Enthusiast

After fighting cystic fibrosis for more than a decade, Tammy Bolerjack received a life-saving double-lung transplant at Mayo Clinic. Taking full advantage of her renewed health, today she’s fit and running strong. 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 wasn’t something she envisioned in her future. Little did she know then that eventually a double lung transplant at Mayo Clinic's Florida campus would not only allow her to breath normally, but would motivate her to become a fitness enthusiast and a competitive runner.  [...]

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Feb 19, 2015 by @HoytFinnamore · View  

Breaking Away From Pain With the Help of 'The Scrambler'

KarenSafranek1000Participating in a clinical trial gave Karen Safranek a solution to her decade-long struggle with peripheral neuropathy 

Karen Safranek didn't take a worry-free step for 10 years. Severe peripheral neuropathy — a side effect of breast cancer treatment she received in 2002 — 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 trial 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."  [...]

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Christa Jocelyn responded Sep 24, 2015 · View

The MC5-A Calmare therapy device is designed to generate a patient-specific cutaneous electrostimulation to reduce the abnormal pain intensity. Sixteen patients from one center received one-hour interventions daily over 10 working days.

Edited: 09/24/2015 @ 11:42pm


Janlynn E responded Thu, Aug 4 at 11:46pm CDT · View

I am willing to bet that I am at the edge of going crazy and have tried everything for my SEVERE peripheral Neuropathy (chemo induced). I had read of the Mayo clinic trial but never saw any results until now. So...... where do I get the Calmare scrambler treatments in the Southern California! I am hoping that I might soon no longer wake up in tears from the pain. Has it been approved for insurance [...]

Edited: 08/04/2016 @ 11:49pm

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Thu, Aug 4 at 9:44pm CDT by @SharingMayoClinic · View  

Mayo Clinic’s First Lung Transplant Recipient in Florida Makes Every Moment for 15 Years and Counting

Richard and Janice Oppelt with transplant surgeon Dr. Cesar Keller. When Richard Oppelt arrived at Mayo Clinic's Rochester campus in early 2001, his lung capacity was minimal – 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."

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Sat, Jul 23 at 10:50am CDT by @SharingMayoClinic · View  

'All We Want Is for Evie to Reach 100 Percent of Her Potential'

Evie McLeish at Mayo Clinic Proton Beam Therapy Center. The night before 8-year-old Evie McLeish’s brain surgery, her Mayo Clinic neurosurgeon David Daniels, M.D., Ph.D., told her parents, "I don’t want you to think of this as the end. This is just the beginning of a marathon."

The procedure was the start of Evie’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 family’s home in Ankeny, Iowa, just a three-hour drive away.

"We were dealt a big blow with Evie’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."  [...]

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seguemike responded Tue, Aug 2 at 5:27pm CDT · View

Evie, keep rockin' and kickin' cancer! Enjoy your life and your family & friends. All the best, MAK:)


cdiffsull responded Thu, Aug 4 at 6:28pm CDT · View

Evie was an inspiration to her PBT "big sisters" throughout their treatments, too. It's going to be so exciting watching Evie flourish and grow up to be an amazing young lady. Hugs Miss E!

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Wed, Aug 3 at 9:41pm CDT by @SharingMayoClinic · View  

Healing Baby Lucas’ Heart With His Own Cells

A Mayo Clinic research team led by Timothy Nelson, M.D., Ph.D., is using Lucas Gutman’s own stem cells to try and save him from needing a heart transplant later in life. Jennifer Gutman calls the day doctors diagnosed her youngest son, Lucas, with hypoplastic left heart syndrome 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 brought immediate fears for Lucas’ future.

Determined to help Lucas, Jennifer’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.  [...]

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Tue, Aug 2 at 9:44pm CDT by @SharingMayoClinic · View  

Tree Farmer’s Passion for the Outdoors Thrives Thanks to Palliative Care Team

Roger and Sally Conklin welcome visits from Charlene Anderson, a palliative care nurse practitioner. Roger Conklin has a passion for being outdoors. A tree farmer for more than 50 years, Roger looks forward to the changing seasons and experiencing the cycle of planting, growing and harvesting.

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 and Supportive Care Service became part of Roger’s care team, too.  [...]

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Fri, Jul 29 at 4:36pm CDT by @SharingMayoClinic · View  

Seamstress Moving and Sewing Again After Complex Spine Surgery for Scoliosis

Years of progressing scoliosis left Kimberly Kimmons in severe pain and put her vocation as a seamstress at risk. But a series of surgeries at Mayo Clinic successfully treated her condition, allowing her to continue creating unique fashions.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, Kim’s family didn’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 Clinic’s campus in Jacksonville, Florida, who were confident they could help. But as they assessed her condition, Kim’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.  [...]

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Wed, Jul 27 at 3:08pm CDT by @SharingMayoClinic · View  

After Learning Flu-Like Symptoms Were Actually Thyroid Cancer, Mother Shares Advice to Help Save Others

BethSpreitzer805It 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 – fatigue, chills, fever – 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.  [...]

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Thu, Jul 21 at 9:39am CDT by @SharingMayoClinic · View  

Volleyball Player Realizes Her Dream With Help From Her Mayo Clinic Team

Volleyball player Brooke Johnson was inspired by her care team after her hip surgery.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 hadn’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.

“I was convinced we could do it,” she says. “That’s what I was working toward, and I refused to give up.”

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.  [...]

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Wed, Jul 20 at 4:20pm CDT by @SharingMayoClinic · View  

Unique Form of Genetic Testing Uncovers the Reason for Years of Mysterious Symptoms

SharonMills805When 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.  [...]

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Sat, Jul 16 at 11:05am CDT by @SharingMayoClinic · View  

Refusing to Give Up After Devastating Accident, A Farmer Finds Help and Healing at Mayo Clinic

Gene Franke is back on his feet after farm accident. 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, that’s exactly what happened.

A serious accident left Gene paralyzed and in critical condition. Doctors in Oklahoma didn’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.

“The doctors at Mayo Clinic knew what was going on, and they assured us they could do something for him,” Barbara says. “We knew he had to get up here. The care at Mayo Clinic is like nowhere else. We’re used to it, and that’s what we wanted.”  [...]

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Aug 15, 2014 by @iggeez1416 · View  

Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Karen Gibson at Mayo Clinic with her husband. I want to share my story to possibly help another person and to hopefully help others who are still facing their own health unknowns.

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 – 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. 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.  [...]

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livalot responded Mon, Jun 13 at 1:01pm CDT · View

I'm so sorry! It is a debilitating disease. I had my thymus gland out in February and am getting infusions every 6 months. Had my first 2 in April. Plus was on 60 mg of prednisone. Down to 40 mg and back up again. I'm not sure the surgery or the infusions are working. It's hard to tell. Hoping you find something that gets you better. We need a cure!


laureen responded Sat, Jul 9 at 11:13am CDT · View

The great man who cures all known diseases, Dr Sebi is a healer, pathologist, herbalist, biochemist and naturalist, who immigrated from Honduras and who has committed his life to the service of helping people cure their diseases. In 1988, he took on the Attorney General of New York in a Supreme Court trial where he was being sued for false advertisement and practice without a license after placing ads in a number of newspapers, including [...]

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Oct 19, 2015 by @HoytFinnamore · View  

Sidelined No More - Scrambler Therapy Puts Tess Wilson Back in Action

Tess Wilson is enjoying life again after scrambler therapy helped her chronic pain. 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 a clinical research trial 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.  [...]

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ginaw responded Fri, Mar 4 at 12:24am CDT · View

Does this help someone with HNPP...hereditary neuropathy with liability to pressure palsy?


Dlvsbrs responded Fri, Jul 8 at 7:28pm CDT · View

Does this help with small fiber neuropathy as found in erythromelalgia? Could it help Erythromelalgia patients?

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