Celebrating My 15-year PH Diagnosis Anniversary

Today is Valentine’s Day, y’all. I know that some of you are eating fancy chocolates and sipping wine, all the while blowing kisses to your love.

But for me, Valentine’s Day brings an outpouring of mixed emotions. Fifteen years ago, my life was dismantled in more ways than I can count. I lay in a hospital bed for almost two weeks with no clue what was wrong. But I knew that something was not right. From my work in nursing, I acknowledged that my shortness of breath, irregular heart rate, and swelling were not normal and required medical attention.

In the months leading to my diagnosis, I had an abundance of questions. Most local doctors had no knowledge of pulmonary hypertension (PH). I was told, “It’s in your head,” and this caused me to question myself. Diagnoses ranging from being overweight to having anemia, asthma, and autoimmune disease only added to my confusion. Along with my confusion and the disrespect I was shown, I started to lose faith in my medical providers.

Thankfully, I saw a heart failure doctor who had worked in a PH center and had recently relocated. He fought for me, making calls to my insurance provider and telling them that I was “one sick woman” and needed more testing. This was the beginning of my PH journey.

I started on a calcium-channel blocker, but unfortunately, it was ineffective. So I started on Revatio (sildenafil), and thankfully, it offered some relief. I continue to take Revatio at a higher dosage in combination with other PH medications. I am eternally appreciative of this doctor and the other medical providers I’ve been blessed with through the years.

If I could write a letter to my newly diagnosed self, it would go something like this:

Dear Jen,

You are stronger than you think possible. Anyone would feel scared trying to decipher the facts from all that you have been told over the last several months. Be gentle with yourself and continue to self-advocate.

The journey will be tough, not only physically but also mentally and financially. Some days you won’t be able to imagine how you’ll make it through the next hour, much less the entire day. Remind yourself that tomorrow is a new day, another chance, another gift.

Your family members are the true warriors as they stick by your side. You are blessed with a loving and caring husband who will continue to support you, even on the toughest days. He is your rock when you are weak and your voice when you can’t speak.

Jen with her husband, Manny. (Photo by Kaley Elaine Photography)

Your baby girl will grow up to become a smart, beautiful, and fearless young woman. Despite your fears that your PH will mess up her life, she will continue to thrive. Yes, PH will affect her, but it also will arm her with strength and teach her to live her best life every day.

Jen and her daughter, Kayla, at Kayla’s wedding. (Photo by Kaley Elaine Photography)

You will lose a few friends but gain many new supportive friends and PHriends. The relationships that you will build within the PH community will tug at your heart as you feel their struggles. Your heart will fill with joy as you celebrate their happy moments. Meeting some of these PHriends in person and speaking at various PH functions will be just the beginning of your PH advocacy.

Jen, you will scare the heck out of your loved ones several times. When you lose the ability to eat, feed, and dress yourself, it will be one of the most horrific trials you will endure. But you will continue to thrive and PHight as you amaze yourself, your family, and your entire medical team.

Through many tears, struggles, and pain, you will celebrate milestones that are forever embedded in your heart. You will cry as you watch your daughter graduate middle and high school, and then college. With God’s grace, you will help to plan her wedding to your new “son-in-love.” You hadn’t thought that wedding dress shopping would be possible after your PH diagnosis. But on that day, you will do it. And on their wedding day, your God-given strength will allow you to walk down that aisle with your portable oxygen concentrator.

Jen, you will become bitter and overemotional and question God on multiple occasions. But your faith, family, and strength will pull you through. Frustrations and fears will wax and wane as you experience excruciating and debilitating pain that brings you to your knees.

Writing and sharing your PH story with others will offer an outlet of emotions and prove cathartic for you while also inspiring others.

You see, Jen, PH life is complicated, and with coexisting illnesses it becomes tougher. PH will continuously try to dismantle you, but you will continue to show your courage, strength, and PHight. Remember to stay focused on the positives and remain hopeful despite your many struggles.

Love, Jen

A quote from Maya Angelou that resonates with me on my PH journey is: “We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.”

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.