In 2008, her eight-year-old son Karen was diagnosed with pulmonary arterial hypertension (PAH) after a right heart catheterization. I spent most of that night researching, taking notes, and writing questions and concerns about this rare and incurable disease that I had never heard of until that day.
The next morning, I walked into the follow-up doctor’s office, hand in hand with my husband, Brian, and a notebook and binder filled with my research results.
Read social media posts from students returning to school this month to ponder the day and the present.
American philosopher and scholar Alan Bloom said, “Education is the transition from darkness to light.” I believe it was education that helped guide my family through her PH treatment over the years and the heart and double lung transplant Karen received in 2014.
All PH or transplant patient curricula are as unique as caregivers, but share some common core standards. Below are some highlights of my caregiver education on PH and transplants: .
How to take and organize notes
Reading and writing have always been part of my learning style, so I made sure I had Karen’s medical notebook and binder with me at every appointment, emergency room visit, and hospital stay.
Especially in the early days when PH was a foreign language, I was afraid of forgetting important points, so I took notes at every meeting. I wrote down unfamiliar medical terms so I could look them up later and write down their definitions. I thought the better I could communicate with my doctor, the better I could defend Karen.
Binders consist of dividers and folders that help organize medication lists, including summaries of important appointments and procedures, medical history, emergency contacts, generic and brand names, dosages, and purposes. I have also inserted business cards of many of the specialists and pharmacies involved in Karen’s treatment.
medicine
It wasn’t just medical terms that I learned. I also felt it was important to study medicine to better understand PAH.
Mathematics and science were my least favorite subjects in school. I always struggled with both, but this time it was different. I needed A to keep my son PHight alive. This made learning easier.
I read as much as I could about PAH and asked Karen’s doctors and nurses. I re-educated my anatomy and focused on the heart and lungs and how they work. I read and watched videos that helped me understand Karen’s various routine tests and procedures. . During hospital rounds, I listened as intently as the resident as the doctor discussed Karen’s health. Finally, I was able to answer some of the medical questions asked by the residents.
You mean I was on my way to becoming a nurse or a doctor? Certainly not, but the more I learned, the more confident I became as a caregiver.
chemistry
Cullen underwent three treatments to treat PAH. All I had to do with Traclear (Bosentan) and Revatio (Sildenafil) was let Karen swallow them. epoprostenol GM) was a big responsibility that my husband and I took on.
I was taught how to properly mix florane and diluent and how to read and follow dosage tables. increase. Eventually a new concentration of Flolan will be required and the pump will need to be programmed accordingly.
Flolan IV: Rate in mL per day: 82
Dosage in ng per kg per minute: 27.6
Concentration in mg per mL: 15,000
Dosage per 100 mL of diluent: 1.5 mg Vial: 1
It looks daunting, but it honestly wasn’t as hard to master as we thought it would be until we passed multiple demonstrations of our ability to mix Flolan and program a pump to dose it. The hospital did not discharge Cullen.
Share with research group
In a previous column, I wrote about the special things PHriends Cullen has created over the years and the wonderful parents who have become my friends and research partners. We learned through each other’s experiences and shared the spurts of energy we used to use to help each other in any way we could.
I couldn’t ask for a better classmate.
book report
I have a Bachelor’s degree in English and started experiential and theory teaching at PAH. Sharing Karen’s story through writing is part of her self-made syllabus that I enjoy, it’s therapeutic for me and hopefully helpful for others.
If you’re just starting to learn about PAHs, apply your favorite creative methods to your syllabus.
Note: Pulmonary Hypertension News is strictly a news and information website about this disease. It is not intended to provide medical advice, diagnosis or treatment. This content is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or other qualified health care provider if you have any questions regarding your medical condition. Do not disregard or delay seeking professional medical advice because of what you read on this website. Opinions expressed in this column are those of Pulmonary Hypertension News or its parent company. It is not BioNews’ opinion and is intended to stimulate discussion on issues related to pulmonary hypertension.
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