Mayo Clinic Champions

Mayo Clinic Champions share their knowledge and experience to help other patients make the best choices for their care. Champions are committed to making a difference in the lives of others facing complex health issues and always advocate for patients.

PUBLIC PAGE
Sep 24, 2018

Monthly Mission: Why did you become a Champion?

By Tony Hart, Champion Specialist, @TonyHart87

Champion Badge

Mayo Clinic Champions make a difference for others. They understand what others are going through with their health care journey because they’ve been there. People join the Mayo Clinic Champions program for many reasons, but the program would like to hear why you chose to join.

Some Champions join to:

  • Reach others to help them find answers
  • Learn more about Mayo Clinic
  • Share their experiences to show others are not alone
  • Spread the news about what Mayo Clinic has done to help you

Or there are many other reasons that may be unique for you. Share why you became a Mayo Clinic Champion in the comments below or email the Mayo Clinic Champions program.

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@mepowers

I found this site when I was already well into remission, and wished I knew about it when I was going through treatments. I would have loved to have had others to talk with about the way I was feeling. I received my initial treatment at Mayo and was then sent to my home state to get treatment. Mayo saved my life, and I was treated so wonderfully, I wanted to share that experience with anyone it might help. When I was going through the treatment, I just put one foot in front of the other and made it through. It wasn’t until later that I realized what I had been through. It is also to talk with people that know exactly what you’ve been through. It’s a great network!

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I'm so happy to hear this @mepowers. I'm glad you are doing well. Sharing your experience to help others find hope and healing really makes you a Champion. I'm glad your experience can help others and get support as well.

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All my health records are in one file and all facets of my health service are immediately aviiable to each and every doctor that I have an appointment with,

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@TonyHart87

Welcome aboard @team4travis. Lee used to be my manager in my old role at Mayo Clinic actually. He's a fantastic speaker and I can see how he could inspire you. Being President of a nonprofit (T.E.A.M. 4 Travis) is an amazing way to tell your story and help others. I'm glad many of the Mayo Clinic resources have helped guide you along. Keep up the great work.

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Thank you Tony, for the warm welcome! Yes, Lee was a great speaker, I'm sure he was a great manager too. I look forward to being part of this community and continuing to advocate for Isolated Congenital Asplenia, fundraising for research and treatment as well as raising awareness!

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@nurseheadakes

Wow – I am so sorry about your little one; and give you praise for your work in bringing attention to this unknown rare disease. My husband and I just moved from WI where there were other rare genetic diseases noted & cared for at Children's' Hospital in Milwaukee over the last 30+ years. As a nurse, I remember the heartaches and difficulties in gaining information, treatments, and answers that weren't always there. It continues to be an area of high emotions, stillness, research and prayers.

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Hi nurseheadakes, thank you for your kind words about our work at T.E.A.M. 4 Travis. We're getting involved in the rare disease community and learning more about so many trials and tribulations as people search for answers to their rare disease. Unfortunately, we had no idea Travis was born without a functioning spleen, this was only revealed after his death, during an autopsy. So, the work we do is in Travis' memory, creating his legacy by hopefully calling awareness to ICA and contributing to research and development of a diagnostic, so that other families don't have to experience death of a child from this silent killer.

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The death of a child can never be described adequately or sincerely because there are no words to envelope it. I have a sister/brother-in-law who lost their first born years ago after having him for only a few days as well. For them, it was not a tumor or disease but accidental exposure of radiation to mom/baby during the pregnancy that ended his life early (encephalitic) It was a shocker as well. Something preventable but nothing they could do. He would have been the oldest Grandson for our extended family but instead he is with our Heavenly Father awaiting us when we join him. There is our Hope.

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I'm so very sorry for your sister & brother-in-law and their son's death after only a few days of life. The accidental radiation exposure is truly a tragedy. You commented they had their son for only a few days "as well". I wanted to clarify, my son Travis was 4 years old, not 4 days old, when he died of the rare genetic birth defect ICA. Many children with ICA die before their 1st birthday, so it's something of a miracle I was able to be his mother for 4 years. Loss of a child forever changes you. Child death at any age is absolutely traumatic, it is outside of the natural order of things. Even with faith and hope, it is a challenge.

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It was a normal delivery for the two of them….but then he only lasted a day or two and then died. It was traumatic for all of us because no one suspected. Indeed, I would say it was a miracle for you. And there are other miracles out there. We must always remember that our children are gifts given to us for a little while…and that we should cherish them for as long as we may have them, whether it is for a short while or for a life time.

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I joined because I firmly believe that Mayo is the best place to start. Without really knowing the question, my first answer will be Mayo Clinic. I am a 14 year cancer survivor, my husband is a 9 year survivor , we have lost many family members to cancer. After being at Mayo for my husbands multiple myeloma, and two ASCT, I discovered a whole different way of getting medical help. It is a world away from anything we can expect locally. I want to share how amazing it is to really have care that is centered around the patient. I have convinced 4 of our friends to go to there and they feel the same. I have even offered to take others there. I believe there is no better medical care anywhere in the world. If I can help others by sharing that story, or by sharing my experience with cancer then it would be my pleasure.

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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.

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@shrinkerbell

I became a Mayo Clinic Champion because I feel that I have been through so much, I like to encourage people and let them know they are not alone and if I can do things then so can they. I think one of my biggest accomplishments has been-after living almost my entire life with obesity, In 2006 I was almost 600lbs and a patient at a care center recovering and was told that I could no longer go on any van or buses for wheelchair transportation. At first I was pretty upset, then I got mad. I decided I was going to show them, so with the approval of my RN, Doctor, and dietician, I started on a low carbohydrate/high protein diet. I lost around 200lbs in 18mo.;however, then I went through some "stuff" and gained 50lbs. So, I basically stayed around the same weight from 2006-2012. In 2012, I had gastric bypass surgery. I lost another 200lbs in the first year. Since I could not walk at this time, my exercise consisted of what I could do in my bed and in my wheelchair. I just had my 7yr surgery anniversary appointment yesterday. Eventhough I have gained about 40lbs, my doctor is extremely happy because I have still lost over 75% of my excess body weight. He is also happy with my blood work and my continual general positive progress. I just like to encourage people that are obese, that they too can do what I have done if they want to. This has not been easy even with gastric bypass. Gastric bypass is NOT the easy way out it is a tool that I can use to lose weight. However, the most important tool through this whole progress has been my head. I have had to figure out why I was eating, and TRY to change that habit. It is NOT easy. This is a day-to-day, meal-to-meal, life of choices. That is why this is NOT a DIET. This is a New life journey is a different direction. I have learned that I am not always going to make the right choices, and "life happens" with things we can't control. I just need to remember that Making a bad food choice does NOT make me a BAD person. I just need to get back "on track" making "good food choices". I do really wish I could reach as many people as I can and just let them know that if I can do this-so can they. I do know, however, that people have to be ready for their own journey, and if they are not ready, nothing I say will make a difference.

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Hello @shrinkerbell (by the way, I like the name you chose!)

Congratulations on achieving a lot of important goals! More importantly, I commend you for being willing to change your thinking about food. You have developed a great philosophy for the ups and downs related to eating habits. I especially like what you said, "I just need to remember that Making a bad food choice does NOT make me a BAD person. I just need to get back "on track" making "good food choices".

This is a philosophy that can take you through achievements as well as the setbacks that come with making a significant change in lifestyle.

Once again, congratulations and I appreciate your sharing your story on Connect!

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