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As Mayo Clinic Connect celebrates its 10th anniversary, Rosemary Huckleberry, better known as @rosemarya, reflects on the evolution of the past 10 years—Mayo Clinic Connect’s and her own from member to mentor.
In 2009 I received a liver and kidney transplant at Mayo Clinic in Rochester. After returning home post recovery, I wanted to learn more about living life as an organ transplant recipient. That’s when I discovered Mayo Clinic Connect.
Because I trusted the Mayo Clinic name, I felt comfortable joining an online social network for the first time. I thought by becoming a member of Mayo Clinic Connect, I could meet another transplant recipient—someone like me with whom I could share and learn. I was eager to know more.
One day someone asked a question I knew I could answer. We had the same health condition! To my surprise, I was looking for support for myself, and instead, I found people asking questions about many of the things I had already experienced. It felt natural for me to talk about parts of my own health journey with liver failure and organ transplant to support and encourage others. I like to think that by sharing my story, patients and loved ones find comfort in realizing they are not alone and that there is always hope.
Back in 2011, Mayo Clinic Connect interactions were more limited. A member asked something, another answered, maybe. It led to short, one-to-one exchanges between two or few people. At the time, I thought it was terrific, learning along with others. Looking back, I can see that there wasn’t the sense of community there is today. Moderators, mentors, and active members make it a priority to welcome new members, introduce them to other members, share knowledge, and encourage connections and conversations. It’s much more like gathering together around the coffee table and benefitting from the wisdom and experiences of many.
I’ve been a volunteer mentor since the mentor program was introduced in 2016. When invited to become a mentor, it was natural to say yes. I saw this as a way to support and uplift others like myself. Through group conversations, I like to help people learn more about their condition, ask questions, and be more prepared for talking with their medical team.
The most rewarding part of being a mentor is the ability to touch others. I can extend my hand and send a gentle virtual squeeze to someone hundreds of miles away. I like that. One of my biggest joys is when a member shares that they have received a successful organ transplant.
In 2016, I started a discussion called Living Life after Your Transplant, where I invited members to share their tips for everyday practical living with a transplant. The Mayo Clinic transplant staff synthesized the knowledge and advice shared in that conversation to create a blog post and a video (click the link to see the discussion, the blog, and the video we made). The video was shared with patients via the Mayo Clinic app and was also uploaded to Mayo's YouTube. I could never have imagined that Mayo staff would have used information from a patient discussion as they did!
A highlight for me as a long time member and mentor was being interviewed on Mayo Clinic Radio about the value of the online patient community. What a thrill to be acknowledged and to represent the community.
Member Spotlights are a fun way to learn about members. I stepped out of my comfort zone and volunteered to conduct member interviews along with fellow Spotlight team mentors @hopeful33250 and @johnbishop. I enjoy helping members tell their stories.
Mayo Clinic Connect has had a bright past and it will continue to have a bright future. I would like to see continued emphasis on mentors and members guiding and encouraging members to be advocates for themselves. I hope Connect is a resource for medical professionals to learn what patients say they need, and use these insights to help improve their relationships with patients for better care.
Above all, I would like Mayo Clinic Connect members to know that, even when they may not think they express themselves very well, what they have to say is important.
Come join me around the conversation table. Your contributions make a difference.
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For what it is worth, this afternoon I was eating candy that a neighbor brought to me, she had made it herself and, within less than 5 minutes, I felt stressed, depressed, did not know why, but I remembered that the same thing happened to me yesterday after I ate so much candy and washed them with orange juice. So I looked up on the Internet what were the side effects of too much candy, too much juice. I looked up both on the English site and the French site... the side effect of candy and too much juice is diabetes, the side effects of diabetes who goes untreated: depression, anguish, fatigue, stress, high blood pressure... all of which I have. My general practitioner had mentioned that I was borderline diabetic but NEVER SUGGESTED THAT I SEE A SPECIALIST. Tonight, I ate a salad, had no juice, no wine, and went walking (3 miles). I already feel a little better. So, as I said above, do the research and see for yourself; I will call a specialist Monday.
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5 Reactions@nannette2022, I am happy that you have joined Mayo Connect. I want to say, "Welcome" and "Thank you" , for researching and sharing what you learned about the Mayo brothers.
I commend you for being alert and listening to your body when you had eaten too many sweets. I am happy that you are feeling better and that you took a walk and enjoyed a healthy meal. It is especially easy for me to overdo sweets, especially during a holiday.
I am not surprised that your general practitioner did not send you to a specialist when he said you were borderline diabetic. I am, however, disappointed tht he did not discuss it with you and give you some dietary information.
Where I live (KY), it can take months to get an appointment with a specialist unless it is an emergency referral from a primary care/general practitioner. Nannette, have you had a checkup with your general practitioner recently? I think that this is a good time to schedule an appointment and tell him what you experienced yesterday and today. Then ask him about borderline diabetes. He might want to monitor your possible condition more closely. If you have someone to go with you to be an extra set of ears?
Here is a link to the discussion Group about Diabetes & Endocrine System .
https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/
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4 ReactionsRosemary, my general practitioner, after I asked about how his son was doing was more eager to tell me how well he was doing in college, that he was not going to become a general practitioner because there was no money to be made in that field, but he was going into finance, When I grew up, going into the medical field was like going into the priesthood: a vocation.
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3 Reactionsthank you.
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1 Reaction@nanette2022 Right on!! I usually have a very simple breakfast, a salad lunch, and a proper full meal evenings. Works well for me. oldkarl
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4 Reactions@nannette2022, I’m very sorry you’re borderline diabetic, but it’s great that you’re in tune with your body and wanting to make change. I haven’t eaten refined sugar in a number of years. But, when I had a liver transplant and started researching the impacts of my meds, I found that one of them makes me at a high risk of diabetes,
For about a year now, I’ve adopted a pretty strict low carb diet. Very seldom do I have pasta, potatoes, white flour, processed foods, etc. I also have peripheral neuropathy and a couple autoimmune diseases, so my diet, along with walking and exercise, has helped with these issues as well,
It isn’t an easy diet, especially if you have to work, as cooking certainly requires more time. But, planning can help. And, the rewards will be great! There’s a lot of information, videos, etc. available on diabetes diets. I hope you can get into see an endocrinologist soon to discuss a path forward. Best wishes and be strong!
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3 ReactionsThank you so much for the information. I have started walking 6 miles a day (3 AM 3PM). and I totally refrain from sugar and limit the intake of fresh fruits.
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2 ReactionsThank you for sharing this and for your dedication to MCC. This podcast was inspirational and motivating to me. I look forward to sharing it with others. 🙂
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2 Reactions