The passionate and dedicated folks at PatientsLikeMe have followed my journey almost as closely as I have. Recently, they asked me to share my transplant experiences from getting “the call” to rehab and recovery.
If you haven’t checked out PLM yet, I strongly recommend you do, starting with this interview!
It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!) Read the full interview
Recently I was interviewed by the patient-support website PatientsLikeMe.com about “Life on the List”. You can check out the full interview here.
I love PLM because it provides a single, comprehensive location where I can track everything from my meds to treatments, hospitalizations, and even how I’m feeling today. The charts feature offers a running history that I can review as needed with my medical team. Plus, the forums allow me to connect with other patients to ask questions, share ideas and encouragement, and offer feedback on a wide variety of pf-related issues.
A key component of PLM is data sharing between researchers and members. Researchers frequently send out requests to members to take part in questionnaires, interviews or surveys. And, I can give them access to my charted info for further research and analysis.
If you haven’t visited PatientsLikeMe.com, it’s well work a click. They have communities for a wide variety of diseases, illnesses and conditions — even “rarities” like pulmonary fibrosis.