TERESA: What brought you to Mayo Clinic Connect?
@jeanern01: I am a registered nurse and I have congenital heart disease. I have a husband who is a physician and we have 2 healthy kids. I felt pretty comfortable where my health was at and how I was managing it. But 3 years ago I was thrown a big curve ball when I was diagnosed with 2 different cardiac congenital abnormalities that were completely unknown to me (a bicuspid aortic valve and an aberrant right subclavian artery). They required immediate attention and a referral to Mayo Clinic. Surgery repaired a large aortic arch aneurysm and left subclavian aneurysm caused by coarctation of the aorta.
I was doing my research on my new diagnosis when I found Mayo Connect. Not being able to find much data on one of my conditions, I thought hopefully I can connect with others who have a similar diagnosis and compare treatments, options and outcomes. I was able to connect to members with similar cases to mine almost immediately and I felt a sense of relief knowing that I was not alone — there are others and they are here to tell me their stories. It was motivating, inspiring and incredibly comforting.
TERESA: What motivates you to take part in the community?
@jeanern01: I felt immediate comfort talking to people who had similar issues. It is great to have online community support. So if there is someone who has similar experiences as mine who is asking for support or help, or just wants to tell their story, I want to pay it forward and listen and help as best as I can.
TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?
@jeanern01: I really feel Mayo Clinic Connect is a safe, non judgemental place. There are so many people here who are willing to help, listen or just send a virtual hug when needed. I find sometimes just interacting with others helps reduce anxiety. It is therapeutic. It’s just a great support system.
TERESA: What groups do you participate in?
@jeanern01: Right now I am in:
TERESA: Tell us about a meaningful moment on Mayo Clinic Connect.
@jeanern01: I don't really have one specific moment on Connect — I have had many. I was diagnosed with an aberrant right subclavian artery, which I was told is fairly rare, and I could not find much information on it. I did find several others through Connect who had similar issues, some had the same questions, and others had answers.
I was also just recently diagnosed with an adrenal mass. The first place I turned to was Mayo Clinic Connect and I was instantly connected with others. Since then I’ve been that connection to someone else.
TERESA: What surprised you the most about Mayo Clinic Connect?
@jeanern01: The number of people who utilize the program was the most surprising thing for me about Mayo Clinic Connect.
TERESA: What energizes you, or how do you find balance in your life?
@jeanern01:I am an information seeker. I find the more I can find out about a problem and increase my understanding, the less anxious I feel and the more in control I feel.
I enjoy traveling with my family. My husband constantly pushes me out of my box and comfort zone, challenging me. We have had so many great adventures.
TERESA: Do you have a favorite quote, life motto or personal mantra?
@jeanern01: “I believe every human has a finite number of heartbeats. I don’t intend to waste any of mine.” Neil Armstrong. My sisters had t-shirts made for my entire family with the quote when we did the 1 in 100 ACHA walk this year.
TERESA: What do you appreciate the most in your friends?
@jeanern01: They are my family.
TERESA: What food can you simply not resist?
@jeanern01: I am such a foodie! I love all kinds of food and trying new foods. One of my favorite things about traveling is trying new local foods.
TERESA: Puppies or kittens?
@jeanern01: Since I have 2 cats, my answer is kittens.
Member Spotlights feature interviews with fellow Mayo Clinic Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.
@jeanern01 Thank you so much for sharing your story. It truly is inspiring and as another information seeker, I also find learning more about my conditions comforting. Thanks again for letting us get to know you a little better!
This is an amazing place…I agree with the concept that “ you were hit by a truck and did not see it coming”.
Thank you for your work as a nurse and your husband’s work as a doctor.
I can’t even remember how I found this site in the last year, probably searching for anything on my husband’s diagnosis with IPF, meds, And also discovering that he had a very watchable aneurysm near his lungs. Maybe the IPF diagnosis will save his life…crazy thought, yes?
I have so many non life threatening painful nerve/spine/etc issues, and this site has been so helpful for me
With fabulous support and suggestions.
My husband had an amazing experience yesterday afternoon-I posted some questions yesterday morning about supplements that were suggested for him to take by our functional Med group.
The “team” got back to me with tons of appropriate, helpful and decision making information. Within a few hours on a Sunday!!!
He was so impressed and couldn’t believe it.
I know that you are all feeling the family here, and I pray for you and you family, @ jeanern01
And thank everyone, as well as all volunteers and staff, on this site, for your help!
ch47
Thankful,to be a part of Mayo, -…Deborah Thomas
It is 7:00 am, I just have joined Mayo connect, I will getback!
Good morning, Deborah. Welcome back.
Check out the Support Groups here https://connect.mayoclinic.org/groups/ and follow a group of interest to you and join the discussions.
Or use Search to find discussions on topics relevant for you https://connect.mayoclinic.org/search/