Sixteen years ago, I was lying in a hospital bed, unsure just how much my life and my family’s lives were about to be turned upside down.
As a nurse, I thought I could be “fixed” and sent home. That was far from my reality. Who would care for my family if I couldn’t? My daughter, KK, was only 12 at the time. What about my patients?
From the beginning, the initial shock sent my family into fight-or-flight mode. We continued to thrive despite the “death sentence” I had been given. My diagnosis was pulmonary hypertension (PH), something unfamiliar to me at the time.
Our lives have taken many twists and turns through the years. But this week, we proudly celebrate 16 years of PHighting PH. Because this is our story, not just mine, I wanted to interview my husband, Manny, to ask about his reflections on our time since diagnosis. Excerpts follow:
JC: Can you share a little about what was going through your mind 16 years ago?
MC: Sixteen years ago, we had just started living some. We had just taken a cruise. Celebrating the many milestones with our close family and friends, our life was busy. We all had our health. Life was good and just starting, or so we thought.
When you told me you couldn’t make it across the parking lot, I was baffled. I still remember that call.
Still today, the hardest part for me to grasp is why can’t you be fixed? I’m a mechanic, so I fix things, but I can’t fix you. Continuously, I hope that one morning, you will wake up, and PH will be gone. But I’ve come to terms with it as part of you, part of us. We’ve adapted our lives and still have fun on your “good” days.
What advice would you offer to a partner or caregiver of someone newly diagnosed with PH?
Breathe. Talk to someone. Things will get complicated. Be prepared to go through many emotions. You’ll be mad, sad, happy, confused, all at once. You find yourself asking why on many occasions.
Be ready for the bell and fight like hell. Your partner, family member, whoever is going through PH needs you more now than ever before.
Caregiver burnout is a common issue. What do you do for yourself to help prevent this?
Caregiver burnout is a monster; it will break you down and beat you hard. A simple trip to the gas station and my mind starts to worry if you’re OK.
When I’m out flying my radio-controlled planes and helicopters or riding my bikes without you by my side, I’m wondering and worried.
It’s not humanly possible to be at ease, but caregivers need these breaks, even if it is for brief periods. I honestly don’t have the answer to this question. It’s an ongoing struggle.
What is one thing you have learned throughout this journey?
As a caretaker, husband, and friend, I’ve learned that in living with someone with a terminal illness, our definition of the word love goes well beyond the scope of what society thinks it is.
I’ve also learned the good and not-so-good sides of the medical world. It truly is a scary environment when the medical professionals ignore a patient or caregiver’s input, resulting in a disastrous situation. You must advocate for your loved ones when they cannot.
What has been the most challenging part of these last 16 years?
This last hospitalization rendered my soul mate blank to the world. It was crushing me, not speaking to or seeing you for approximately 13 days. Without knowing if you would push through. I know you’re a PHighter, but this last episode was the worst ever, and I was not sure that I would bring you home. Those few weeks apart felt more like years.
We all know that living with chronic illness can take a toll on a marriage. What’s your secret? The “Manny fan club” wants to know.
“In sickness and in health.” It’s the way I was raised. Your wife is your queen, and you are her king. You shall be the pillars for her to rest upon. (Mainly, the secret lies in the quality of the pepperoni pizza she orders from DoorDash, LOL.)
Anything else that you want to add?
No matter how tough you are, always be prepared for the unknown. Always tell each other how much you love each other, and never go to bed without kissing goodnight.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have 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 spark discussion about issues pertaining to pulmonary hypertension.
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