Change is inevitable when you or a loved one is diagnosed with pulmonary hypertension (PH). There will be physical, emotional, and social adjustments. And one day you will notice that your home has been unexpectedly redecorated.
Boxes of medical supplies will take over tables, drawers, and cabinets. Trash cans will overflow with medical waste. Furniture will be rearranged to make space for oxygen cylinders. Even your freezer might experience overcrowding — ice packs for specialty medications will fall out when you open the door.
But the chaos can become organized and, more importantly, functional. My family’s first step was accepting the change. We tried storing supplies in a seldom used upstairs guest room, but that was far from functional. PH was in our home to stay and we needed to make proper space for it.
My son had a central line for Flolan (epoprostenol GM). This treatment came with responsibility and supplies. Our priority was creating a comfortable space to mix the Flolan and safely perform central-line dressing changes, and having supplies organized and within reach.
The living room sofa became our choice spot. We purchased a small table that could withstand being sanitized with alcohol every day. Its sole purpose was for Flolan mixing and dressing changes. When not in use, it folded easily and was placed out of the way.
Every evening, we mixed a new cassette of Flolan. Rummaging through supplies slowed the process, so we found a better solution. When big boxes of supplies were delivered, my husband and I worked together to organize the contents.
In a gallon Ziploc bag, we placed everything needed for preparing one mix of Flolan, including: cassette, tubing, Flolan, diluent, needles, syringes, alcohol prep pads, Q-Syte adapter, end cap, labels, and batteries for the Flolan pump. It worked best to store two weeks of bags in a laundry basket tucked under a coffee table. When it was time to mix, a bag containing everything we needed was within reach.
Our son’s PH specialist was in a different state, so using laundry baskets simplified our trip planning. There was never a question if we packed everything we needed, because his medical supplies were already organized in the basket.
Gallon Ziploc bags and a laundry basket also were used to organize dressing change supplies. We prepared each bag with a dressing kit, alcohol prep pads, Betadine, Biopatch, dressing, medical tape, adhesive tape removal pads, gauze, connector, and end cap.
We always had extra supplies for emergencies. Instead of having the overflow take up drawers and cabinets, we purchased plastic stackable drawers. Placed in a corner of our kitchen, these organizers were handy for storing boxes of gloves, masks, and the needle disposal container.
Two wastebaskets were reserved for recyclable and nonrecyclable medical waste. This prevented the accumulation from overwhelming our regular household trash cans.
We invested in an oxygen cylinder rack that was kept in the garage by the door that connected to our kitchen — out of the way but easily accessible. As for those pesky ice packs, once a month we inspected and purged any that appeared overused. A small freezer in the garage was handy during the summer when more ice packs were needed.
Getting rid of expired and unneeded medications also freed up space. We used medication disposal sites offered at some fire stations, Walgreens, and CVS pharmacy locations.
Despite our efforts, an overflow of extra supplies would sometimes derail our organization. Rather than throwing them away, we contacted places that accepted donations such as hospitals, home healthcare companies, nursing homes, community centers, churches, and the Salvation Army.
After my son’s heart and lung transplant, we donated unused supplies to Empower Philippines. Dr. Jude Verzosa and his wife, Therese Zapanta-Verzosa, are the co-founders of this nonprofit organization and dear friends of our family. It warmed our hearts knowing that our donations were going to those in need in the Philippines.
If you are new to PH, consider my advice. Acceptance, organization, and donation are the best ways to maintain your home after diagnosis.
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.