I’ve written before about the importance of community while battling chronic illness, especially rare diseases. The advice and support I’ve received from other patients through online groups and in-person PH conferences have been invaluable to my fight.
Today, we’ve launched the Pulmonary Hypertension News Forums, a new part of our website devoted to empowering patients, caregivers, and medical professionals with information and community. Now you can create a profile and chat with other readers and me.
I am truly privileged to work for BioNews Services, the company that runs PH News and other rare disease-specific news sites. I can be myself and share my truth in a professional context. Writing publicly about personal details of my life has in turn given me the confidence to be open about my condition with my photography clients. Honesty and vulnerability have only generated positive feedback so far. Which is why, as I announce growth in my role with BioNews, I feel it is appropriate to include a story about my bowel movements.
Recently, a patient considering a lung transplant asked what the hardest part of the process was. Without hesitation, I answered, “GI issues,” adding that it is impossible to predict the biggest hurdles (gastrointestinal issues were the last hurdle I expected). I spent so much time sitting on a toilet during recovery that I vowed to dedicate at least an entire chapter of my forthcoming memoir to the subject of poop. Seriously.
About five months after my transplant I started having diarrhea regularly. The problem persisted for months, my doctors shrugging their shoulders and blaming different medication tapers. Then, someone in a lung transplant Facebook group asked whether prednisone causes loose bowel movements. Another patient commented that magnesium oxide can cause them. I did the math — my diarrhea had started when I replaced hard-to-get MG Plus Protein tablets with generic magnesium oxide capsules. As soon as I reversed that medication change, I went back to having regular bowel movements. Simply paying attention to an online discussion made a huge impact on my quality of life.
All right, that’s enough about poop (for now). My point is that I have benefitted from easy access to information and sources outside my immediate medical team. It’s rewarding to pay it forward, and I’m excited to do more of that with this online platform.
Yes, there are other online support groups for PH patients. No, our goal is not to replace them. I don’t know if these forums will be more or less effective than existing forums, but I am personally delighted by the incorporation of a public discussion into a news-based platform. I’m grateful that BioNews recognizes the importance of community forums as tools for those facing chronic illnesses.
Through the PH News Forums, patients, caregivers, and medical professionals can discuss relevant articles. For instance, when I write about waiting for my heart-lung transplant, one might ask what my status was on the waiting list and what the average wait time is.
Without proper moderation, Facebook groups become a stream of repetitive questions. The PH News Forums combine curated content with group conversation. Organized by topic, the forums will be more efficient and accessible resources than linear feeds. Topics include Advice for Newly Diagnosed Patients, Diet and Nutrition, and Mental Health. Members can propose new topics where appropriate. I will be moderating the discussions to ensure they remain relevant and respectful.
Visit the PH News Forums page to create a username and password on the right side of the page (or the bottom, if you’re on a mobile device). After you click register, you will be prompted to enter your name and some details about yourself, including your relationship to the PH community — patient, caregiver, medical professional, and so on. Go ahead and add a profile photo and a short biography about yourself. Next, visit the different forums to introduce yourself to other users, weigh in on topics, and create your own.
There’s a private messaging feature available to all users so that if you have any questions for me, just go to my profile, stare at the picture of my face, try not to think about my bowel movements, and hit “Private Message.” I am so excited to meet you all!
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.