Pulmonary hypertension is unpredictable in countless ways. I experience noticeable health changes throughout each day, from one hour to the next. Pulmonary hypertension has impacted the way I breathe and the amount of daily exertion for the things I love doing. Recently, it has harmed my weight and nutritional intake.
Growing up with congenital heart disease, I have always been conscientious of diet. After receiving my pulmonary hypertension diagnosis, I have tried even harder to focus on heart-healthy nutrition, limiting salt intake, following fluid intake guidelines, and cutting back almost completely on caffeine consumption. Regardless, pulmonary hypertension has thrown me a curveball lately.
In the past few months, I have had frequent 10-day hospitalizations. I’ve lost weight from these admissions and have struggled to regain it due to vomiting, nausea, and appetite loss, resulting in malnourishment. I’ve been struggling to strengthen myself while also battling the mental and physical stress of weight instability.
After my 10-day hospital admission from the end of December to the beginning of January, I felt physically weaker than I have in a while. After vomiting and experiencing uncomfortable digestive pains, I didn’t have much energy to eat. I knew that I had to eat to maintain some type of strength, but malnourishment limited me physically and my breathing became strained. I was too weak to carry around my oxygen tank, I couldn’t put on my AffloVest due to back and chest muscular pain, my skin dried, my hair fell out with each wash, and my whole-body fatigue worsened.
Not only was I feeling physically defeated after my weight loss but I also felt mental exhaustion. With significant weight loss and inadequate bodily vitamins and minerals, I felt more depressed and lacked all desire to do what I loved. I couldn’t find the energy to write my columns I have been so passionate about. Physically and mentally, I felt as if I was falling apart and couldn’t see much hope in things resolving.
I was helped most by a gastrointestinal (GI) doctor who has been an incredible advocate for me and has worked closely with my pulmonary and cardiology team. She has helped me to make a turnaround after my most recent 10-day hospitalization. It turns out I have delayed stomach emptying due to poor circulation and blood flow. After a CT scan, doctors noted that I have a rare vascular ring pressing on my esophagus causing dysphagia and vomiting. To help restore nutrition while I try to find a surgeon to fix this, I am using a stomach PEG tube. I have been doing tube feeds throughout the day in hopes of building strength.
It’s an understatement to say that this has been an unexpected, shocking twist in my medical journey. I never before pictured myself getting supplemental nutrition and having my GI tract affected by horrific things beyond my control. During this time I must focus on the control that I do have. I can set up my feeds and visit with my dietitians and GI doctor to get the best nutrition possible while awaiting surgery. The surgery will hopefully undo this twist in my life story.
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.