Recently, I was fortunate enough to be able to speak to the employees of MedComp and MarTech in Harleysville, PA, about understanding the patient perspective of long term vascular access and management (yes, this is a topic I geek out over!)
I believe it is important for the manufacturers and distributors of medical device companies to understand the perspective of the patients they work with. From my experience of attending healthcare conferences over the past three years, I have found that the majority of the medical device companies do little to understand how their systems affect the patients they serve. That is why I was so excited when MedComp wanted to bring me out to their headquarters to educate their employees.
Here are the insights that I shared with them, that I hope can help all of you to have a deeper insight into.
The Life of a Professional Patient
Many of us are in and out of the healthcare system our entire lives and we have to do our best to remember all of our medical histories
Once you have a chronic condition, this stays with you for life and affects all aspects of your daily life, from your diet to the activities you can and cannot do.
Many of us live with physical medical devices, such as PICC lines, ports, glucometers, or our lives revolve around doctor's appointments and trips to the pharmacy.
Here Is A Little of What I Go Through on A Weekly Basis:
- 20 to 40 pills per day, many of them supplements
- 1 to 5 infusions per day through my PICC line
- Weekly IVIG Therapy at my home (a 4-hour infusion!)
- Weekly PICC line Dressing Changes
- Doctors Appointments in NYC, Boston, and Rhode Island
- Managing prescriptions, appointments, and vital signs daily
Not Every Day Is Easy
While I am on the path to recovery from Lyme and coinfections, some days I still face joint pain, neuropathy in the right side of my body, and chronic fatigue. Some days I walk and my right leg doesn’t always want to come with me. On days where I am having a hard time, it is all about adjusting my schedule to do what is best for my body and mental health.
Just Because I Have a PICC Line, Doesn’t Mean I Can’t Do Amazing Things
I may live with vascular access, but I still travel, go to the beach, do fun photo shoots with friends, and oh by the way I co-founded a pretty awesome company called Mighty Well. Have you heard of it? ;)
Where I Find Support
Thanks to the power of the internet, I have met amazing people through physical and online support groups. Some of my favorites are condition specific, or those like PICC Line Club 2.0 on Facebook which helps people with PICC lines, ports, central lines, tunneled catheters, midlines, and all types of vascular access. My favorite however has been the power of the hashtag on Instagram. I have met so many amazing friends via Instagram through hashtags such as “spoonie,” “Lymewarriorr,” “Chronicallyfabulous” and more! Do yourself a favor and check them out.
The Psychological Effects From Living With A Chronic Condition
I have gone through the dark days of trying to understand who I am now that I have a chronic condition. I want others to know that you will come out of it strong and more empowered. Here are some of the questions I struggled with and thankfully have found my own answers to:
- Who am I Now?
- Who Was I When I Wasn’t Sick?
- Who Are My Real Friends?
- Why Do I Feel So Alone Even Though I Am Surrounded by Family and Friends?
Trust me, it gets better and you may even meet some amazing people along the way!
Encourage Loved Ones To Ask Questions Like:
- How Are You Feeling, Honestly?
- Do You Want Me To Check In With You?
- Can I Help You With That?
- Do You Need to Vent?
- Or simply say, “I Care!”
What I think I helped MedComp To Understand:
Once we leave the hospital with a medical device, such as a PICC line, Port, or central line, there are many challenges and life adjustments that come along with it. Here are some things I don’t think that most people realize we have to deal with:
- Showering Challenges (can’t get our medical device wet!)
- Dressing Challenges (need to be able to access your medical device.
People staring and asking questions about our physical medical devices
Going through TSA and any kind of security is a bitch. Yup, I said it.
Organizing all of our medications, many of which have to be kept refrigerated.
Leading a Normal Life in general!
I am so grateful that I got to speak to over 50 employees at MedComp. If you or your organization would like to better understand the patient perspective, you can book to have me come speak to your organization.
I have spoken for The Association for Vascular Access, Fidelity Investments, The Association for Vascular Access, Tuft's Health Plan, The United States Association for Small Business and Entrepreneurship, MassChallenge, RI Jumpstart Coalition for Personal Finance, WIN Lab Miami, Babson College, Wentworth Institute of Technology, Emerson College of Nursing, and more. Thanks to the help of these organizations, I've been given the opportunity to share my story with spoonies everywhere!