Member Spotlights feature interviews with fellow 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.
ROSEMARY: What brought you to Mayo Clinic Connect?
@athenalee: I had my liver transplant in August 2020. A couple months after my surgery, I developed hand tremors, soon followed by the feeling of “pins and needles,” numbness, nerve pain, and muscle pain. My transplant doctor thought at first it was due to Tacrolimus (medication to prevent organ rejection), but as the symptoms continued to escalate, she said I needed to see a neurologist.
In the meantime, I started doing research and looked up my symptoms online. That search led me to Mayo Clinic Connect! I not only discovered the Neuropathy group, but also the Transplants and Autoimmune Diseases groups!
ROSEMARY: What motivates you to take part in the community?
@athenalee: I have learned so much from members on Mayo Clinic Connect. Before I found out about the bookmark feature, I was taking notes based on the information and tips shared in the Neuropathy Group discussions. (@johnbishop should write a book. I suggest the title “A Patient’s Perspective on Neuropathy.”)
Furthermore, I feel I’ve gained valuable friendships from so many wonderful people in the Transplant group.
ROSEMARY: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?
@athenalee: Well, I’m definitely not known for being shy. I think all the members and volunteer mentors create a welcoming and supportive community where anyone can feel comfortable. Writing is a great art and an awesome way of expressing support and empathy, sharing experiences, and just chatting with Mayo Clinic Connect friends. The website is very well designed and easy to use, and the mentors do an amazing job at keeping discussions flowing, providing guidance, and oversight as needed.
I also appreciate @estrada53 and I were permitted to start the Transplant Culinary Arts series on Zoom. It’s been wonderful working with @estrada53 and chatting with Mayo Clinic Connect friends virtually!
ROSEMARY: What groups do you participate in?
@athenalee: I’m largely engaged in the Transplants and Neuropathy groups, but I do venture into Autoimmune Diseases, Chronic Pain, Healthy Living, Just Want to Talk, and others. I also enjoy the articles in the Transplant expert blog and other featured articles as well.
ROSEMARY: Tell us about a meaningful moment on Connect.
@athenalee: I’ve experienced so many meaningful moments, but I’d say a favorite is the discussion called “What do you order when eating at a restaurant?” in the Transplants group. I learn things, share things, and really enjoy the discussion. @hello1234 is a wonderful person to connect with. She posts great discussions!
I truly found it fascinating to discuss bone marrow transplantation with Lori, @loribmt. I have gained a new found respect for bone marrow transplant recipients and the conversation sparked me to do research into the differences between solid organ and stem cell transplants.
I also discovered things about solid organ transplants that I didn’t know.
I enjoy sharing information and experiences that I’ve discovered and found helpful. It's nice when sharing information is appreciated and when I feel it benefits people. Learning, sharing, and, the best part, meeting and conversing with so many wonderful people makes it worthwhile.
ROSEMARY: What surprised you the most about Mayo Clinic Connect?
@athenalee: Despite the pain and hardship people have gone through, so many Mayo Clinic Connect participants remain positive and hopeful. Mayo Clinic Connect offers a very giving and supportive environment and has helped me grapple with my own health problems and remain positive. I’ve also found it therapeutic to be able to offer my research and personal experience for support to others. I’ve never been into counseling or therapy, but I have found the support and kindness of fellow members to be inspiring.
ROSEMARY: What energizes you, or how do you find balance in your life?
@athenalee: I awake each morning grateful for my second chance at life. This serves to start my day in a positive way. I’d say learning as much as possible about my ongoing health issues, eating healthy and cooking, and walking, dancing, and exercising. I tend toward evoking humor when possible. This helps me remain upbeat.
ROSEMARY: Tell us about your favorite pastime or activity.
@athenalee: Music, dancing to loud rock and roll, and listening to the opera. Also, watching Sci-Fi and good horror films.
ROSEMARY: Do you have a favorite quote, life motto or personal mantra?
@athenalee: Leonardo da Vinci is a hero of mine…so, here’s two quotes I aspire to incorporate in my life: “Learning never exhausts the mind.” and “The noblest pleasure is the joy of understanding.”
ROSEMARY: What do you love about where you live or vacation?
@athenalee: I live in a small town in Vermont with a population of 12,000 or so. I moved to a small town because I was tired of city traffic and chaotic living. My town has lots of music and events, a theater, a large food coop, a thriving downtown, a year-round farmers market, and a diversity of restaurants. The Connecticut River separates the town from New Hampshire, offering beautiful views. We have 20,000 acres of hiking trails around the town, scenic low-lying mountains, and lots of wildlife. I live just five minutes from downtown. I’m an hour or two away from amazing art museums, concert halls, festivals, historical sites, hiking, and more. The drawback…I don’t like snow and as I write this it’s a balmy 2 F outside! Ugh. Spring, summer, and fall are great though!
Lori, why does the above again say it is to me rather than to you? THAT IS VERY FRUSTRATING!
Hi! That’s frustrating for sure! Let’s see if I can help out.
Oh I understand what you’re saying. I think what happened is that you’re ending up replying to yourself by clicking the Post Comment button at the bottom of the page. Or replying in your own box.
Next time you want to reply to a specific person’s comment, click the “reply” button IN their comment. That way it will be directed to them. As I did for you in this comment.
You can also make sure it gets posted to a specific person by adding their @name, in this case, @loribmt That way the person will get the notification that there’s a response to their reply. 🙂
I’m going to be away from my computer for an hour but I’ll come back to check to see if this works for you. Does what I say make sense?
Lori,
I think I got it right this time. At my age computer
technology, spelling, and typing does not come easy. Thanks for your
understanding and advice. Although I got up to 30 words a minute typing in
Denton, TX high-school in 1940 I had the same secretary for sixteen years
working in NY City in the 1960s,70s, and 80s.
Surprisingly, some typing
capability has returned!!
@dubyael, thank you for your insightful comment! 99 hey?! That’s awesome. I’m a liver transplant recipient. My two surgeons were female and my current transplant doctor is female.
If you watch Netflix, check out A Surgeon’s Cut, episode 3. It’s about Dr. Nancy Ascher, the first woman transplant surgeon.
Be well, Athena
Too funny Laurie! I greatly enjoyed hearing from you. Thank you. I don’t do much typing on my iPhone, too small and I have hand tremors…very messy! Siri is useful though. I use my iPad for most of my writing. I recommend one.
Peripheral neuropathy is just weird and painful. I take Gabapentin when I’m home from work. It helps some. I also take a muscle relaxer at night which really doesn’t do anything for pain, but is helpful for sleep. I’d do cannabis, but it interferes with my immunosuppressant meds, along with a lot of pain meds for neuropathy.
For me, I’m hopeful my new rheumatologist I get to see next week can help, as my neuropathy is caused by an autoimmune disease. Then, two weeks later a new neuromuscular doctor…my hope is they can coordinate with my transplant team to actually devise a care plan for me!
How’s your new place? Are you able to eat any good food these days?!
Hugs, Athena
@athenalee Hello Athena! Thankyou very much for your helpful response. I'm still in a quandary as to whether my leg pain is caused from neuropathy or possibly from vascular issues. You'll maybe recall that I have had Giant Cell Arteritis for three years now, as well as several other autoimmune diseases , so it could well be either. From my former great team of 7 or 8 specialists, none have ever addressed this particular issue and I've had so many other issues, I didn't pursue this one as insistently as I should have. Now that I've moved to a different place and am almost completely without medical aid for the long haul, woe is me! You're fortunate to be in a centre with doctors available to you and I'm very happy for you. I hope your two new upcoming appointments will have great results!
You asked about my new digs...well, sad to say, this place hasn't worked out for the best. I just had good news this week though that I've been accepted into an Assisted Living facility in a town close to my family! We're all elated! Two of my sons and their wives will travel to my present location to move me and my stuff! My move-in date is February 22nd. Unfortunately, we have a lack of available doctors right now in British Columbia and none are taking new patients. The only solution for me will be an ambulance ride to the hospital an hour away. However, I'm really hopeful that my new environment will bring some stress-free and peaceful living and a renewed lease on a healthier life! Ever the optimist!
All the best to you, Athena. Hugs back. Laurie.
P.S. I want to write much more but am afraid my little cell phone might crash and delete! More later!
Woes you for sure! Especially with all of your health issues. Assistant living will be much better and allow for the independence that you need and deserve. Plus, close to family! I’m very happy for you! Sadly, Covid has done so much harm to the medical world. Although, my ailments largely developed after Covid, so I don’t have much in the way of experience. More rural areas are notoriously underserved certainly. I’ll have a 2-2.5 hour drive to my doctors each way…but hopefully the coordination of care will be worth it. Maybe you can find a way to see a couple specialists in one trip.
I’m sure being in a much better environment and closer to loved ones will help with healing and stress reduction. Please post “what’s out your window” pictures when you get settled in your new digs!
🤗Athena
@athenalee Thankyou for your message, Athena. I'll be sure to post some pictures to What's Out Your Window once I'm settled. Can hardly wait for February 22nd! Ten more sleeps, as my grandkids used to say. Hugs. Laurie
Great to get to know more about you @athenalee Wonderful interview!
Thank you very much @stephanierp ! I just read you harrowing tale of transplant waitlist and surgery. I’m honored to meet you and will see you around Connect!