30 Days of PH: Organizing PH

30 Days of PH: Organizing PH
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Day 6 of 30 Days of PH⁣
Topic: Organizing PH ⁣

This is Jane’s story @Jane_Northrop  

My daughter, Nicole, was diagnosed with Eisenmenger’s Syndrome, PAH, and congenital heart defects in January 2010 at the age of 15, after being misdiagnosed her whole life.  

When Nicole turned 18, she assigned me as her power of attorney and health care surrogate. I continue to handle the administrative aspects of her care.  

I try to merge electronics with pen and paper. I rely heavily on Evernote. Nicole does a daily sheet that we created to keep track of symptoms, vitals, food diary, and any Remodulin issues. I also have “notebooks” in Evernote that correlate with the physical binders I have in our home. I use both google calendar and a paper calendar to keep track of Remodulin deliveries, medication deliveries, appointments, etc.

I make and attend all appointments with Nicole. If there is a problem with the oxygen concentrators, I will take care of this. I reorder/refill all her medications and will pick up all her retail pharmacy medications. I keep track of all the paperwork and have access to her patient portals. She gives me consent with all her doctors annually for them to talk to me.  

I have a 3” binder that zips up that is with us at all times. I have tabs divided by the month and it is usually for the current year.  Anything that I receive either in the mail or the doctor’s office will be filed in the appropriate month. If I’m getting it out of the patient portal, I will usually keep it in the appropriate notebook in Evernote. I have a pocket in the front of the binder that is a file folder where I keep her test results until she gets new ones, and then the previous will be filed away in the home binders.  

I have binders for DME, specialty pharmacy, and current doctors. Nicole is on disability so there’s a binder for that, a test results binder, a hospital binder, lab work, and insurance. Retail pharmacy and any other paperwork I will usually keep in a file box.  

If I stay on top of the notes and paperwork I usually can keep everything pretty organized, which saves both Nicole and I headaches and time.  

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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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Colleen Steele was born and raised in New Jersey and received a Bachelor of Arts in English from Immaculata University in 1994. Currently, she lives in Washington state with her husband and two sons. Her oldest child was diagnosed with idiopathic pulmonary arterial hypertension when he was 8. At the age of 14, he received a heart and double-lung transplant. He has experienced many bumps in the road but for the most part, he is doing well and living life to the fullest. Colleen’s love for writing, experience advocating for her son, and determination to spread PH awareness inspired her to become a columnist and forums moderator for Pulmonary Hypertension News in 2019. In her, “Life As A Caregiver” column, Colleen is open and honest about caring for her son, his experiences living with PH, and life post-transplant. It is her ambition to educate and inspire others facing similar challenges that her family has battled and survived.

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