Thank you for sharing this great interview!
Sat, Feb 1 9:17am
Dec 26, 2019 · From Empowering to Empowered - Experts by Experience
Lee thank you for sharing your amazing and inspiring story!
Hi, Dr. Marcelin. I did a search on Google Scholar (https://scholar.google.com/) and found what I think you might be looking for but I'm not sure.
Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities — https://ascopubs.org/doi/full/10.1200/CCI.18.00124
Social Media Engagement and the Critical Care Medicine Community
Hope this helps!
Hi Dan @DanHinmon, I've never seen a patient story that has turned me off although I've seen a few healthcare ads that I kind think – that's nice but wouldn't the ad money be better spent by reducing the cost vs. advertising. That's just my personal opinion though and I've never seen one like that from Mayo.
Patient stories that I really like are ones where the patient has been successfully treated and there is an incentive type ad urging me to followup or check if it might be something that affects me.
Jun 21, 2019 · A Good Night's Sleep - Experts by Experience
I was diagnosed with lymphedema last year, while undergoing treatment for pain and swelling issues with my right ankle, knee, and leg. After going over the examination and test results, the doctor asked me about my sleep quality and habits. I didn’t think much about it at the time—I was more concerned about the lymphedema, and I really didn’t think I had any sleep problems.
After my appointment with the Sleep Medicine department, I was sent home with an oximeter test unit, which I had to bring back the next morning. The results indicated that I would need further evaluation—an overnight sleep study.
The overnight sleep study was quite an experience! With
all the wires connected to my body, one might have thought I was on life
support. Yet, I was surprised when I was diagnosed with severe obstructive sleep apnea.
The good news is that obstructive sleep apnea can be treated by using a continuous positive airway pressure device or CPAP machine. My doctor explained how the CPAP works and the goals we were trying to achieve: to reduce the number of sleep events to four or less per night. When I picked up the CPAP machine and full-face mask, a sleep therapist provided more tips for using the mask and getting it adjusted. As I headed home to start my CPAP journey, I thought this was pretty much all there was to it—put the mask on, turn on the machine and go to sleep. Boy was I wrong!
This is where I have to pause and give thanks to my CPAP
cyber-friends on Mayo Clinic Connect. Without them, I would have struggled even
more than I did.
The first full-face mask gave me the proverbial “CPAP
nose.” Within 30 days I switched to
another mask which fit under and up against the bottom of the nose. But I felt
like I was suffocating, and had to switch to yet another mask.
Almost 90 days after I started using the CPAP machine, I had to bring it back to Sleep Medicine so that they could download the data and verify the usage for Medicare compliance. It seems I was complying—I used the CPAP at least four hours per night. My sleep therapist was very helpful with tips to help me overcome my CPAP nose issue. For instance, she told me that some of her patients had found a cloth cover for the full-face mask which helped keep the nose from getting chafed. She even wrote down the web address so I could look it up at home.
I’m still not at the end of my CPAP journey, but the road
is a lot smoother, and more importantly, I’ve learned how to be my own advocate.
I started the journey with the goal of reducing my apnea-hypopnea index (AHI) to four or less. I realized it wasn’t as easy as I thought it would be. I found an online patient-support community where people were discussing how to reduce events while using a CPAP. Being able to participate in such discussions and learning from the experience of others was extremely helpful.
I learned that many people struggle with the CPAP mask, which was also part of my struggle—I wasn’t alone. This helped me start a discussion with my local sleep therapist on what types of masks others are using, and learn about the variety of masks.
I’m still not sure I have the best mask (for me), but I have one that is pretty close, and it has my numbers around five or less most nights. I’m always searching for tips on improving my CPAP usage by interacting with other patients, and as my CPAP cyber friends would say: Happy Zzzzzs!
Experts by Experience is a collaboration
between Inspire and Mayo Clinic Connect, online support communities
for patients and caregivers. By sharing their stories, patients
and caregivers awaken, inform, and strengthen the capacity to partner in
their care. The stories also help clinicians and non-medical professionals in
health care implement patient-informed practices in their interactions and
communications, by uncovering opportunities for quality improvement. The series
showcases the value of shared experiences and features contributors from around
About the author: After being discharged from the Navy, John Bishop worked at IBM as a Customer Engineer in Southern California and Aberdeen, South Dakota. He transferred to IBM in Rochester, MN and worked as a technical writer until retiring in 1997. John began a second career at the Internet helpdesk with KMTelecom, and plans to retire at the end of 2019. If you ask John, “What’s next?” he would most likely say, “Being able to devote more time to my new passion—Mayo Clinic Connect.”
Merry @merpreb that's what I love about being a Mayo Clinic patient. I can easily communicate with my care team through the patient portal. I can also access any of my previous test results which is a real bonus to me for comparing stuff. I've been able to use it to determine whether or not I need to come in to see the doctor or to ask followup questions that I didn't think of during the last appointment. Mayo's patient portal is patient friendly ☺