Managing pulmonary hypertension (PH) can be exhausting. Adding coexisting conditions makes it even more challenging.
Like me, many people struggle to manage multiple illnesses. In addition to PH, I deal with chronic kidney disease (CKD), iron deficiency anemia, and a few others. It can be overwhelming. Some say it is a full-time job and I would not argue with that.
The worst feeling is not knowing which disease or medication is causing my symptoms. The chest pain and palpitations may be related to my heart and PH, or symptoms of my anemia. The swelling and puffiness from fluid retention are symptoms of either my PH or CKD — or a combination of the two. The unrelenting fatigue is common among all of my illnesses. Lucky me.
Living with coexisting illnesses takes a toll physically and mentally. Deciphering which came first is difficult. I work hard to focus on what my body is telling me. Learning to listen to my body is a daily struggle. I know that when one organ is affected, a downward spiral in my overall health likely will follow.
Because I am dealing with more than one disease, I also have multiple specialists with multiple ideas on my medical team. Their opinions often clash, which is frustrating and confusing for me. Thankfully, all but one of my specialists work at the same hospital. It is crucial that I trust my medical team.
I often run into roadblocks when taking medications to help each disease and the side effects. A specific medication used to treat one disease is contraindicated with another. It is like a balancing act in a circus. Yep, some days I am the circus clown.
Most weeks, I have labs or appointments. It can be exhausting. I try to schedule appointments for certain days of the week, keeping Monday open in case I need to rest after a busy weekend.
If you or your loved ones are dealing with PH and coexisting illnesses, I encourage you to take it easy on yourself. Ask questions of your specialists. Make a list of medications or activities that helped or worsened each symptom. These little notes can help find the culprit, especially when managing coexisting illnesses.
Do you struggle as you try to manage your PH and coexisting conditions? Share your thoughts in the comments below.
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.