By Georgette Bridger
When I hear the words, “The Right Heart,” my mind automatically thinks about pulmonary hypertension (PH). Then I begin to reflect on what my husband has been through since his diagnosis several years ago: a right heart catheterization, pulmonary rehabilitation, new medications, pulmonary function tests (PFTs), daily oxygen, five hours of travel to The John Hopkins University Medical Center to receive specialized care and all of the evident factors related to pulmonary hypertension.
Yet, as a long-term caregiver for a spouse diagnosed with scleroderma and then later pulmonary arterial hypertension (PAH), the words “The Right Heart” resonates deeper and on an intensely emotional level with me. Through this remarkable journey with all of its peaks and valleys, I have come to recognize it takes an individual with the “right” heart in order to effectively care and advocate for a person who lives with a complex, chronic and rare illness. We have all heard the phrase, “It takes a village to raise a child.” Well from my perspective, it takes a person with the “right” heart to provide the appropriate attention and support that pulmonary hypertension and a rare disease requires.
It takes a heart filled with compassion and love, a heart willing to seek continued knowledge, to research specialists, treatment options and clinical trials. It takes a heart of dedication, perseverance, passion and an array of strong qualities to make sure your loved one’s illness is well-managed. Dealing with insurance issues alone takes a heart filled with uncompromising passion, a heart able to bust down barriers, overcome obstacles and tackle tasks that often present the caregiver with overwhelming emotions, frustration and eventually, victory.
My journey began four years prior to meeting my husband, Dean. I met a woman who told me a terrifying story of how she almost choked to death one night when mucous got lodged in her throat and cut off her airway. She further stated she had scleroderma (a word I had never heard) and that her husband left her because he could not deal with the limitations of her illness and the monumental efforts required to care for her.
In 1996, three years after Dean and I married, he began having strange symptoms. After many appointments, one of the specialists diagnosed him with scleroderma. In an instant, everything came flooding back, the terrifying incident the woman went through, her husband leaving because of her illness, the scary information I read regarding scleroderma. I felt utterly powerless in that moment. The good news was that shortly after Dean’s diagnosis, he appeared to be in remission.
In May 2014, Dean came out of remission, and two years later he was diagnosed with pulmonary arterial hypertension. It has been almost six years into his role as “patient” and my role as “caregiver.” In all honesty, I use to think of a caregiver as someone who was with the patient 24/7, providing self-help skills while meeting the patient’s physical needs and rarely leaving the house.
Yet, caregiving is more complex than I could have ever imagined. I suddenly came to understand that it was a gross lack of knowledge on my part to think caregiving was limited only to the physical aspects of patient care. Rather, caregiving involves assisting in the “management” of illness. Education, advocacy, research and patient support services are all critical components of caregiving, which frequently involves complicated decisions.
I don’t view this responsibility as a burden, inconvenience or obligation. I accept this job with a thankful heart and the attitude that I will do everything possible to ensure my husband lives his best life, in the best quality possible. I count my blessings for each and every day I have with him. He is my HERO! His zest for life inspires me! He is doing his part in following through with the doctor’s course of treatment, and, therefore, I will continue to eagerly do my part.
Protecting the right side of our loved ones’ hearts definitely takes an uncompromising passion and a person with the “RIGHT” heart. As with many of you, it’s a responsibility I willingly and gratefully accept and approach with my whole heart (both left and right sides). It’s a responsibility I will persistently continue until a cure is found or as I vowed almost 27 years ago, “until death do us part.”
With my newfound understanding and respect for what caregivers contribute daily, I now acknowledge that caring for a loved one is a generous gift that demands significant amounts of time, energy and effort. We cannot overlook the vital role of the caregiver. I want other caregivers to know you are not alone. I recognize the heart and soul you pour into your role as a caregiver and admire your devotion, dedication and commitment.