In 2008 my then 8 year old son Cullen was diagnosed with Pulmonary Arterial Hypertension (PAH) following a right heart catheterization procedure. I spent much of that night researching, taking notes, and writing down questions and concerns about this rare and incurable disease, which I had never heard of until this day.
The next morning, I walked into the follow-up medical consultation holding my husband Brian’s hand and carrying a notebook and binder filled with the results of my research.
Reading the social media posts of students returning to school this month makes me think of that day and the days leading up to the present.
American philosopher and academician Allan Bloom said, “Education is the movement from darkness to light. I believe education was the candle that guided my family through years of PH treatment and the heart and lung transplant Cullen received in 2014.
Each HP or transplant patient’s curriculum is unique, as is that of their caregivers, but they share some common basic standards. Here are the highlights of my training as a caregiver in PH and transplantation.
Note taking and organization
Reading and writing has always been part of my learning style, so I made sure to have Cullen’s medical notebook and binder for every appointment, ER visit, and hospitalization.
Especially in the beginning, when PH was basically a foreign language, I was afraid of forgetting important points, so I took notes at each appointment. I wrote down unfamiliar medical terms so I could look them up later and write down definitions. I figured the better I could communicate with the doctor, the better I could defend Cullen.
The binder includes dividers and folders to help organize important summaries of appointments and procedures, medical history, emergency contacts and a list of medications, which includes generic and brand names, dosages and the goal. I’ve also added a business card insert for the many specialists and pharmacies involved in Cullen’s care.
Medical words weren’t the only thing I studied. I also felt it was important to learn about medical science to help me better understand PAH.
Math and science were my least favorite subjects in school. I’ve always struggled with both, but this time was different. I needed the A to help my son PHight stay alive. Learning has become easy for this reason.
I read as much as I could about PAH and asked the doctors and nurses in Cullen questions. If I still didn’t understand, I asked them to explain in another way. I re-educated myself on anatomy, focusing on the heart and lungs and how they work. I have read and watched videos to help me understand Cullen’s various routine tests and procedures. During hospital rounds, I listened as intently as the residents did as the doctors discussed Cullen’s health. Eventually, I found myself able to answer some medical questions posed by the residents.
Am I saying I was on my way to becoming a nurse or a doctor? Certainly not, but the more I learned, the more confident I felt as a helper.
Cullen was placed on triple therapy to treat his PAH. All I had to do with Tracleer (bosentan) and Revatio (sildenafil) was to swallow Cullen. But as I shared in a previous column, continuous intravenous Flolan (GM Epoprostenol) was a huge responsibility that my husband and I took on.
We were taught how to mix Flolan and Thinner well and how to read and follow a dosage chart. The chart would start with the example I give below and continue with an increase of 1 milliliter per day every two to three days. Eventually, a new concentration of Flolan would be necessary, and the pump would have to be programmed accordingly.
Flolan IV: flow rate in mL per day: 82
Dose in ng per kg per minute: 27.6
Concentration in mg per mL: 15,000
Use per 100 mL of diluent: 1.5 mg vials: 1
It sounds daunting, but honestly, it wasn’t as hard to learn as we thought, and the hospital wouldn’t let Cullen out until we had successfully completed several demonstrations of our ability to mix Flolan and program the pump that took him. administered.
Study groups and sharing
In previous columns I have written about the specialness that PHriends Cullen has made over the years and their wonderful parents, who have become my friends and study partners. We learned through each other’s experiences, and we shared energy vapors that we could often help each other out in any way we could.
I couldn’t have asked for better classmates.
I began my experiential learning and theoretical training in PAH with a Bachelor of Arts in English. Sharing Cullen’s story through writing is part of my self-created program that I enjoyed. It has been therapeutic for me and hopefully helpful for others.
If you’re just starting to learn about PAHs, apply your favorite creative outlet to your program as well.
Note: Pulmonary Hypertension News is strictly a disease news and information website. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to stimulate discussion of issues relating to pulmonary hypertension.