Summer is here, and perhaps a road trip is in your plans for the season. I’ve always looked forward to this time of year. However, living with pulmonary hypertension (PH), summer can take a toll on my body. Dealing with the unpredictable ”variety pack” of PH symptoms, it is imperative for me to prepare and learn how to balance rest with activity — particularly when planning a summer road trip.
Recently, my husband and I traveled to visit my grandmother, who suffers from dementia. I was feeling optimistic and excited as we planned this journey, which included a 16-hour round trip. It was the longest road trip that I have conquered in over three years. Although I was excited, I started feeling anxious the day before we left.
A long road trip affects my body in many different ways. You might be thinking, “How much can this affect you since you’re just riding in the passenger seat?” Traveling for anyone can be hard, but adding a rare disease like pulmonary hypertension (PH) makes a fun summer road trip incredibly challenging. My body aches all over as I shift around in my seat, trying to find a more comfortable position.
Effects on my body
While traveling, my feet and legs swell up, as does my abdomen. I try to elevate my feet on the dash as we travel, but this is not the most comfortable position. The heaviness of my legs and my tight, swollen abdomen increase my discomfort and breathlessness. I become restless. I also tend to become irritated and frustrated as I realize the limitations that PH has placed on my body. On our return trip, I was so drained that I slept most of the way home.
My body now needs to recharge, and my recovery is taking longer than I’d hoped. As I write this, I have been home in replenish mode for five days. This means pajama days on the couch as I suck up oxygen. I need extra diuretics to reduce the fluid buildup that takes a toll on my worn-out body. Let’s not forget the constant trips to the bathroom. Are you exhausted yet? This trip was not merely physically draining, but mentally tiring, too. Though the memories I made with my family were priceless.
Road trip tips
Road trips can be challenging, but achievable with some preplanning. I want to share some tips with you to help alleviate some of the additional stress and anxiety that traveling with pulmonary hypertension may cause.
- Plan ahead: Check and refill any medications that are running low. When packing my medications, I usually include at least one extra week’s worth; it’s better to have too much, than run low. I also store water and snacks to take with my meds.
- Charge medical devices: Refill portable oxygen tanks, recharge portable oxygen concentrators (POCs), and bring backup batteries. I use a POC from Inogen. If you need other medical equipment delivered to your destination, arrange this well in advance.
- Update medication and medical information: I keep a copy of my current medications, allergies, and doctors’ contacts, as well as my diagnoses, in my purse. I update this list regularly. Don’t forget copies of your insurance information.
- Research your route and destination: When you live with an unpredictable disease like PH, things can change in a second. Locate hospitals and other services along the drive and close to your destination.
Unfortunately, emergencies are inevitable when living with a life-threatening illness like PH. Planning can help to manage a crisis if one occurs. I hope that these tips are helpful for those of you who may be setting off on a road trip this summer. Plan some stops to get out and stretch and for bathroom breaks. Make sure to rest and enjoy your journey as you create lasting memories.
Do you have any tips for summer road trips? Please share them 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.