The first time I heard the words, "I think you have Scleroderma and Pulmonary Arterial Hypertension" was in January of 2012 was from my Internist who had been following for many years. Her words were quickly followed by, "but to be absolutely sure I am going to refer you to the Pulmonary Hypertension Clinic in Halifax." Wow! Talk about a shock. My mind kept racing and wondering exactly what that meant and how serious this was. I had never heard of either one before.
To say I was a tad overwhelmed, would be an understatement. Within a month, after going through many tests, I knew exactly what my diagnosis was: Limited Systemic Sclerosis (Scleroderma) and Pulmonary Arterial Hypertension with extremely high pressures. My Cardiologist did not mince words and told me immediately after my Right Heart Catheterization that I did indeed have Pulmonary Arterial Hypertension and finished the sentence with the words: "this will likely be life shortening".
To hear that at age 68 was not very encouraging. My immediate reaction was not one that most people would expect. I was very calm, even though overwhelmed. What would the rest of my life look like? Was there any medication that would help? Was I facing living each day in doom and gloom? Should I get my affairs in order? What will I tell my family? How will my children react? Many questions raced through my mind.
Eleven and a half years years have passed since that fateful day, and I will share with you that my life has been anything but doom and gloom. What I have learned about myself over the past few years is that I am a very resilient person.
Resilience is basically the ability to bounce back from most anything life may throw at you, to recover quickly from difficulties, deal head on with situations, and carry on with as little stress as possible. It's not about avoiding stress but facing it straight on.
A resilient person usually has:
a sense of purpose
self-awareness
self-confidence
stress handling techniques
positive attitude
perseverance
problem solving skills
When faced with adversity in my life, whether it is dealing with chronic illness, family situations, or the present situation facing our world, the Covid-19 pandemic, I try to face it by tapping into my resiliency. Everyone has a certain amount of resilience and needs to access it when facing difficulties, whether situational or dealing with chronic health issues. It doesn't mean the situations are not difficult, but resilience provides us with the ability to deal with them in a reasonable manner.
Over the years I have developed ways to cope with countless situations. I have always been driven in most things in my life and that has included continuing to educate and improve myself whether through research, taking courses, or attending and conducting workshops.
Attending support groups with like-minded people has been literally life saving for me. I have learned much about myself and have recognized areas I needed to effect change to better my life. Through this, I have managed to create a positive self-image and built confidence in my strengths and abilities. Last, but by far not the least, I have a firm faith and rely on my belief system to guide me through all areas of my life.
My life with pulmonary arterial hypertension has been anything but boring. I have never let myself believe that I could not do something. I have pushed my boundaries to the very limits of my being. If it is suggested that I should not do something, I usually say: "Just watch me."
Of course, I do try to practice sound judgment and would certainly not do anything harmful, nor life threatening. Since my diagnosis, I have travelled extensively, including, Hawaii, California, several European countries, and Western Canada. I have been up in gondolas as well as travelling in a rail car to one of the highest peaks in Switzerland!
I am retired and live alone so do not have a caregiver nor do I feel I need one at this point. I do most things myself and if I can't do something today, I wait for another day to try again. I realize that at my age that my independence could change at any moment. I am prepared to face that hurdle when the time comes.
So yes, there is life after diagnosis. I know this will come to an end at some point, but at 79 I am still going strong and intend to for quite a while. My advice to everyone of you is to push yourself to the very limits and enjoy every moment of your life. Resilience is the answer! Most importantly, listen to your PH Team. Follow their advice.