About

First Name
Tony

State/Province
MN

Country of Residence
United States of America

Health Interests
Bone, joint, and muscle disorders, Healthy Living

Posts (85)

Mon, Oct 28 1:48pm · Help Others Find Cancer Answers - Monthly Mission in Mayo Clinic Champions

For our Monthly Mission we’re encouraging you to share a Facebook post to help spread the word about cancer research and treatment done at Mayo Clinic. Mayo Clinic has contributed to the development of several multiple myeloma drugs and our researchers continue to conduct cutting-edge clinical trials that help drive discoveries into clinical practice. We can help others find answers.

>>Share Answers through cancer research – Clinical Trials

Share Answers through cancer research – Clinical Trials

 

>>Share Answers through cancer research – Multiple myeloma

Share Answers through cancer research – Multiple myeloma

Mon, Oct 7 11:36am · Champion Spotlight: Kelsey in Mayo Clinic Champions

Kelsey is a Champion that has taken control of her story and life through sharing her experience with chronic pain.

Kelsey-ChampionSpotlight

Champion Spotlight is a series that features Mayo Clinic Champions and celebrates the effect they have on people’s lives. Tony Hart, Mayo Clinic Champion specialist, talks with Champions who have provided hope for others in their own ways.


TONY: Can you tell me a little about your healthcare journey?

KELSEY: I spent more than ten years – ten years – trying to understand why my body was betraying me, why I literally couldn’t keep my eyes open, why every nerve ending in my entire being was firing, and why no doctor could tell me what was wrong with me. They misdiagnosed me with every single thing under the sun, tried treatments with no relief. When I say that I was desperate, it doesn’t even come close to explaining how I felt. I had to quit my job because I simply could no longer do it. My identity changed. I was no longer the hard-working, smart, funny, positive person I had worked so hard to become. I was sick. I was just so sick all the time. And I was hopeless.

Enter the Mayo Clinic and a brilliant team of doctors. It was the first time I was sure that someone was listening to me, and believed me, and was invested in figuring out what was happening and how to help me. Finally, I had a diagnosis (several actually): autonomic dysfunction (or autonomic neuropathy), including small fiber neuropathy, POTS syndrome, Stabbing (or ice pick) headache and, finally, a confirmation of severe fibromyalgia. These diagnoses explained every single symptom I had been having for more than ten years. Every. Single. One. Just having a diagnosis made all the difference. I wasn’t crazy. I was right that something was happening to my body and, finally, FINALLY, I could focus on how to get better. The only problem? There’s no quick fix for these.

Mayo Clinic referred me to their month-long Pain Rehabilitation Center to help retrain my brain and my body to live with chronic symptoms and pain, to regain my life and to understand what things I could control to help manage my symptoms. When I first arrived, I wasn’t able to walk more than 15 steps without needing to sit down, I was sleeping all day long or not sleeping at all because my skin was on fire, I was vomiting from the intensity of the pain I was feeling. The program included biofeedback training, diaphragmatic breathing training, Physical Therapy, Occupational Therapy, yoga, sleep hygiene training, life adjustment training, and education on chronic pain from some of the world’s best chronic pain researchers, doctors, nurses and therapists. This program works. I wasn’t just walking, I was ready to hike as soon as I got home to Colorado (and I did). I was sleeping 8 hours a night and staying awake all day. My memory improved. My creativity returned. My zest for life was renewed. And, my pain levels improved dramatically.

TONY: What made you decide to share your experience and become an advocate?

KELSEY: For the ten years I suffered, I felt so alone. I only wish someone had shared their experience with me about the Mayo Clinic, and the Pain Rehabilitation Center specifically, so that I could have found it sooner, so that it didn’t take so long for me to finally come out on the other end a better, more whole person – a wiser being. I want to help others find hope and answers and support too. I want them to know that they are not alone and that there is help for them—and even for their loved ones who struggle to find answers right alongside them. I met people in the program who had stories so similar to mine and arrived with all the fear and pain in the world and left with hope, for the first time in a very long time. More people deserve those same outcomes. And they deserve them sooner rather than later. I hope that sharing my story helps make that a reality for even one other person.

TONY: What do you find most rewarding about helping others?

KELSEY: When you deal with chronic illness, there are so many things that are out of your control. You do your best to use the tools that help you manage your symptoms, but some days are just difficult days. Before the Mayo Clinic, all of my days were difficult days and I had to rely on others for help, which was uncomfortable for me. Now that I’m able, it is my honor and privilege to pass that help on to others. To see the relief in people’s faces when I explain that there’s hope, to see the tears in the eyes of loved ones who finally feel like their family member might find a solution, to see someone take a full, deep, healing breath, knowing that they don’t have to face this alone…these are the biggest and best rewards.

TONY: Is there any advice you would give others wanting to share their own experience?

KELSEY: Do it! Sharing your experience is not only helpful to others but can be cathartic for you. It has helped me accept and move forward with my diagnoses – to move past the uncertainty and sadness and grief about a life that is different than what I had envisioned for myself. Illness, in all of its forms, is something we often live with silently. We don’t want to burden others, we don’t want people to feel sorry for us, we don’t want them to make assumptions about what we can and can’t do. But in sharing your experience—in your words—you get to have a voice, take back control of your story and your life. And, if you’re lucky, you’ll help other people along the way.

You can share your experience

Mayo Clinic Champions love to hear how others are sharing their experience. If you’d like to tell your story, comment below or email the Champions program, and you may be the next Champion Spotlight.

Mon, Aug 19 9:58am · Your Ratings and Reviews Matter in Mayo Clinic Champions

5 Star Rating

Leaving online ratings and reviews is a powerful way to help others find Mayo Clinic’s hope and healing. Your health care journey makes you an expert by experience and that experience is valuable to others. Reviews and ratings can give others a sense of comfort and trust as they move through their care journey and provide insights on what to expect.

Where can I leave a rating or review?

There are a lot of different sites to leave ratings and reviews for individual doctors, care centers, and hospitals. A popular site to review a doctor who treated you is Healthgrades, where you can search by doctor name and location and then leave your rating for them under the reviews section. Additionally many use Google reviews to provide a review for a hospital or center. You can leave Google reviews for using any of our three campuses below.

You can also search for a specific center within a hospital like the Mayo Clinic Spine Center in Jacksonville, Florida, to leave a review there. To find a center that is specific to what you were treated for, it’s easiest to use Google to search “Mayo Clinic center” or “Mayo Clinic program” and then the general condition or disease you were treated for, such as “Mayo Clinic center for epilepsy” or “Mayo Clinic epilepsy center”.

Leaving a review for a specific center is most helpful for others, but if you can’t find one, a review for whichever campus you were seen at also helps.

Examples within Neurology

As an example to show you what sort of centers are out there, we’ve provided links to the Google review sites for a handful of neurology conditions and centers at Mayo Clinic.

Mayo Clinic Brain Tumor Program

Mayo Clinic Epilepsy Center

Mayo Clinic Stroke Center

Mayo Clinic Spine Center

Mayo Clinic Neurology

Mayo Clinic Pediatric Neurology

Tue, Jul 23 1:25pm · Let's get social - Monthly Mission in Mayo Clinic Champions

SocialMediaButtons

Social media is a powerful way to get new information and to share it with your friends. Mayo Clinic is here to help you spread trusted health information and hope to those you care about. You can find the latest through the Champions Newsfeed but we realize you don’t check that page like you do your own social networks. The same great information is also posted to the Mayo Clinic social media accounts.

So if you don’t already, be sure to follow the Mayo Clinic social media accounts to see the latest from Mayo Clinic in your social feeds.

Tue, Jul 9 11:48am · Champion Spotlight: Bill and Helen in Mayo Clinic Champions

Bill and Helen are Champions and chronic kidney disease advocates who want to give others hope. They lead the Saddleback Kidney Disease Support Group that has helped many get the education and support they need.

Bill and Helen

Champion Spotlight is a series that features Mayo Clinic Champions and celebrates the effect they have on people’s lives. Tony Hart, Mayo Clinic Champion specialist, talks with Champions who have provided hope for others in their own ways.


TONY: Can you tell me a little about your healthcare journey?

BILL & HELEN: We live in Southern California. Bill was diagnosed with End Stage Kidney Disease 11 years ago at the age of 72. Our road was quite a rocky one and our first nephrologist gave us very little information about any treatment options other than dialysis. We spent the next 2.5 years pursuing transplant with a dear friend, Jeff, age 46 as our living donor. Once the donor was declined at the first transplant center, two additional centers approved Bill but wouldn’t consider the donor since he had been previously declined. We were devastated. It was then through nothing short of a miracle we met Dr. Mark Wedel, a retired physician who was passionate about helping kidney patients.  He had been transplanted at Mayo Rochester the year before.  He referred us to another local center where they were much more forward thinking and willing to screen our donor on his own merit.  On July 6, 2011 Bill received Jeff’s kidney…at the age of 75. Bill is now 83 and thriving! We knew we needed to share our story so that we could help others facing kidney failure.

TONY: That’s quite a journey. I’m glad you were able to find a living donor and receive a kidney transplant despite hurdles. What made you decide to share your experience and become advocates?

BILL & HELEN:  We learned a great deal about the hurdles kidney patients face and the roadblocks they often encounter in seeking solutions.  For us this included navigating insurance matters, transplant screenings, waiting list barriers, and dialysis options, all while taking care of Bill’s day-to-day health regimen and dietary requirements.  We wanted to help in any way we could to educate and walk along side of others as a way to pay it forward.  In 2011 we worked with Dr. Wedel to implement a local support group at Saddleback Church.  As the group began to increase its number of patients, we were finding some of them had rather unusual health histories that we felt local centers wouldn’t consider. When those patients appeared, Dr. Wedel stepped in to determine their best options and then reached out to his contacts at Mayo on their behalf where a number of them received transplants. We also know that the Mayo Team is willing to “think outside the box” when screening patients and donors. We feel each patient is entitled to be screened on his/her own merit, unless their medical records say otherwise.

TONY: Despite not receiving a transplant at Mayo Clinic yourselves, what drives so many from your support group to Mayo?

BILL & HELEN:  As the wait for deceased organs is terribly long in Southern California, several patients from our group began contacting Mayo in Arizona.  The waiting list is considerably shorter for deceased organs in Arizona and it is a fairly convenient travel destination.  Each and every patient at any Mayo facility has been treated with equal professionalism and exceptional care. To date 28 patients from the group have received kidney transplants and 15 of those have been at Mayo facilities.  Additional patients are still in the process of pursuing transplant at Mayo facilities. The streamlined process for screening patients and donors is one of the high points for patients. At local transplant centers, it’s not unusual for patients to spend a minimum of 6-8 months being screened with lots of frustration in the process.  As a number of group members have migrated to Mayo in AZ, we were also honored when several of the doctors from The Mayo Arizona Transplant team came to Southern California and held a Q&A for the patients and their families. It was very informative and helped more of the group members to think broader about their opportunities.

TONY: Your passion for helping others really shines through in your work as advocates. What do you find most rewarding about helping others?

BILL & HELEN:   We wanted to turn our biggest setback into our best comeback so people know they are not alone. When we see patients attend the group for the first time, they often are like “deer in the headlights”; overwhelmed with their diagnosis and not sure where to go and what to do.  Once they have attended meetings regularly for a month or so and have been loved on and learned more, we slowly see them become more peaceful and reach out to encourage the others who are new to the group.  This is what really brings us joy…knowing they are more in control of their disease instead of allowing their disease to be in control of them.

We remember those days of frustration during Bill’s early stages of his disease.  There is so much information available but it’s often overwhelming to sort through and put together a plan.  If it weren’t for our faith in God we would have lost hope.  We also want patients to know about all the options available to them, not just the ones in their own backyard.

A support group needs leaders for sure.  That being said, Bill and I are very much aware that this group wouldn’t exist without the willingness of all the patients and family members who come and share their stories.  They come to get help but in the process they are helping others.

TONY: What a difference you’ve made! Is there any advice you would give other Champions or those wanting to share their own experience?

BILL & HELEN:   Every patient’s journey is different.  Some stories have happy endings and others maybe not so happy.  But every patient’s story can help someone else who may be going through a similar experience.  Don’t waste a hurt but use it to help others.

We have been fortunate since the inception of this group to have “alumni” continue to attend our meetings and become very proactive advocates for those group members still pursuing their transplant journey.  These alumni members are very useful in giving the patients a new perspective and helping them see their situation from a different lens.  It’s one of life’s best rewards and we are grateful for their continued commitment to pay it forward.

You can spread hope

Mayo Clinic Champions love to hear what others are doing to spread hope. If you’d like to tell your story, comment below or email the Champions program, and you may be the next Champion Spotlight.

Tue, Jun 25 9:40am · Track the difference you make in Mayo Clinic Champions

You’re already doing amazing work with sharing your Mayo Clinic experience with others. We encourage you to track the difference you are making. Tracking helps you better see the full impact you are having and it lets us know about all the great work you are doing too. As you connect with others, it’s easy to track it through your Champion profile.

  • Visit the Goals and Badges section of your profile.
  • Select the badge that best fits your connection.
  • Check the box that you’ve done it.
  • Write in background information (optional).
  • Click “save”.

Hope and Healing Badge tracking

Tracking also shows your progress on how close you are to earning badges. The badges  display on your profile for others to see as you post comments on the Champions website. There are five Champion badges that you can earn:

  • ChampionRegister to become a Mayo Clinic Champion and receive the e-newsletter.
  • Social MasterShare Mayo Clinic health information and medical news on social media.
  • Hope & Healing – Recommend others seek care at Mayo Clinic.
  • MavenSpeak at a meeting or event about your health journey.
  • StorytellerShare your Mayo Clinic story with someone.

The difference you are making is important and tracking helps us all celebrate it.

 

Mon, Jun 17 8:15am · Monthly Mission: Why did you become a Champion? in Mayo Clinic Champions

Thanks so much for sharing @auntieoakley. I'm glad you found answers at Mayo Clinic and have a drive to help others find healing there too. I'm sure you've helped many with your story.

Mon, Jun 10 7:59am · Impact the patient experience at Mayo Clinic in Mayo Clinic Champions

strategy puzzle

You can help transform care for patients with your feedback. The Mayo Clinic Patient and Family Advisory Council (PFAC) is looking for representatives with diverse backgrounds, experiences and perspectives who want to have a valuable impact on the patient experience at Mayo Clinic. PFAC members regularly advise Mayo Clinic on how to provide better patient-centered care, and serve the health needs of our community. PFAC members have provided:

  • Feedback that helped develop a patient-friendly online portal
  • Input that drove elements of the redesign for Mayo Clinic’s critical care unit
  • Insights that improved wording on patient surveys and materials
  • And much more

Becoming a PFAC member is a great way to help others and have a valuable impact with your feedback. As a Mayo Clinic Champion, you have a unique perspective of Mayo Clinic that will help create an improved patient experience.

Learn more about applying to be a PFAC member.