Books About PH

[Kathleen Sheffer]

One of our members (@seagypzy) brought up the topic of books about PH. She’s looking for resources for educational and reference purposes as a newly diagnosed patient. There are several medical texts available about the disease, but as far as we know, very few books have been written by patients.

Have you read any books about PH? Do any of them have patient authors?

Here are some books by patient authors that I know of:

• • Mary Gohlke (1985) — I’ll Take Tomorrow: The Story of a Courageous Woman Who Dared to Subject Herself to a Medical Experiment-The First Successful Heart-Lung Transplant

• • Gail Boyer Hayes (1998-2013) — Pulmonary Hypertension: A Patient’s Survival Guide

• • Jeannette Morrill (2010) — Living with Pulmonary Hypertension

• • Liz Devivo (2013) — Holding On For Dear Life: What My Fatal Diagnosis Taught Me About Living

• • Colleen Brunetti (2014) — Defining the New Normal: A Guide to Becoming More Than Your Diagnosis

• • Charity Tillemann-Dick (2017) — The Encore: A Memoir in Three Acts
    • Read an interview she did with PH News!

Have you read any of these books by PH patients? What did you think? Do you have others to add to the list? Have you written your own book or have you thought about doing so?

I read several memoirs by transplant recipients after my heart-lung transplant (including the three listed above). They were inspiring and informative: the patient authors normalized some of my crazier symptoms (hallucinations, anxiety, anger, and so on) and assured me things would improve and that the process of healing was worth it. I hope to one day write a memoir of my own as I have found that writing for my blog and my column for PH News has helped me and others. Writing can be therapeutic, but the best part is hearing from other people who can relate to what I share. That has encouraged me to share more, including the unpleasant parts of my life (like bowel movements!).

Have you benefitted from reading and/or writing?

• This topic was modified 2 years, 2 months ago by Kathleen Sheffer.
• This topic was modified 2 years, 2 months ago by Kathleen Sheffer.
• This topic was modified 2 years, 2 months ago by Kathleen Sheffer.
• This topic was modified 2 years, 2 months ago by Kathleen Sheffer.
• This topic was modified 2 years, 2 months ago by Kathleen Sheffer.
• This topic was modified 2 years, 2 months ago by Kathleen Sheffer.
• This topic was modified 2 years, 2 months ago by Kathleen Sheffer.
• This topic was modified 2 years, 2 months ago by Kathleen Sheffer.
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[Kathleen Sheffer]

Oh my goodness seriously struggled formatting that list, as you can see by the nine different modifications!!!

[Joni]

Thank you @kathleen-sheffer, that is a good list. I bought the newest issue of Patient’s Survival Guide as a digital download. It is hard to read on my phone, but it has some good info. Another great resource might include a list of links to youtube videos and youtubers with pulmonary hypertension/living with pulmonary hypertendion. I spend 10 minutes before bed each night watching something about pulmonary hypertension.

[Brittany Foster]

Joni,
There is a youtuber and motivational speaker who changed the way i look at oxygen and disease. she didn’t have PH, she had cystic fibrosis and unfortunately passed away after a transplant. But look up Claire Wineland and her videos. She is simply amazing and I know her legacy will live on.

[C. Todaro]

Currently reading “….Patient’s Survival Guide”. Very helpful. Thanks for the list.

[Kathleen Sheffer]

Great to hear! When you’re finished, let us know what you think was missing or what you would add, and what you found most helpful.

[Brittany Foster]

Definitely interested in this too! Let us know how the book is when you’re done !

[Author]

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