New symptoms lead to more tests and a POTS diagnosis

A PH diagnosis was only the start of this columnist's health complications

Jen Cueva avatar

by Jen Cueva |

Share this article:

Share article via email
Banner image for

“Just one more” sounds like a line from a country song, doesn’t it? Flash back a few years, and you’d catch me saying that at the local karaoke bar. It was my little plea to my husband, Manny, and a promise that we could head home after just one more drink. Or perhaps it was after a thrilling ride on the back of Manny’s motorcycle as we wound down with friends at our favorite spot. I was known around town as the “chick with the oxygen.”

But not this time. This time, it’s not that easy.

Lately, “just one more” has been echoing in my mind, and I wish the reason behind it were a little more fun. Navigating the twists and turns of pulmonary hypertension (PH) is an adventure on its own. But the plot thickens with each new diagnosis.

Recommended Reading
banner image for

A Struggle With PH and Comorbidities

My problematic health history began in 2005 with PH and congestive heart failure. Fortunately, my PH was diagnosed early, and I’ve been lucky enough to manage it with just oral treatments. I also have an amazing PH team, which has gone above and beyond in caring for me the past 19 years.

Almost a decade later, we were cruising through life, figuring out how to manage PH, and then, out of nowhere, another diagnosis hit us. It was a surreal moment when I found out I had chronic kidney failure on top of everything else. I even told my husband he should leave me. He hadn’t signed up for this, and it was his chance to escape. I felt trapped and unworthy, burdened with a growing list of chronic and progressive medical issues.

But to my immense gratitude, he chose to stay. He weathered the storm of PH with me, and now we face the challenges of chronic kidney disease together.

This can’t keep happening

About a year after my chronic kidney disease diagnosis, I experienced the shocking reality of waking up in the intensive care unit following an ambulance ride I couldn’t remember. I discovered that I was battling hyponatremia, or low sodium levels, in addition to everything else. This period marked one of my life’s most challenging seasons.

Dealing with moments of confusion in which I couldn’t recognize my husband, daughter, and other loved ones was heart-wrenching. It wasn’t just tough on me — my family and close friends shared in the turmoil, navigating a storm of anger, worry, anxiety, and depression alongside me. The realization that they had to witness me in such a vulnerable state, lost to my surroundings and the people I love, caused profound heartache.

That dark season continues to linger in my thoughts as I replay the many times when my medical team feared that my time on Earth was running out. But with prayers, they were wrong.

Along the way, anxiety, anemia, and gout joined the mix. Juggling these with a rare disease like PH and other conditions, I stand today only because of faith, love, and exceptional care.

During a routine visit with my PH team recently, I poured out a list of symptoms I’ve been battling for the past few weeks: dizziness, nearly fainting, a rapid heart rate, and breathlessness. These weighed heavily on me, even if I limited myself to minimal activity. Worst of all were the tremors in my hands, legs, and feet that robbed me of precious sleep. Despite bedtime remedies, exhaustion clouded my brain and my days. All I craved was rest.

My PH doctor’s attentive ear and concerned gaze hinted at another diagnosis, which turned out to be postural orthostatic tachycardia syndrome (POTS). A tilt-table test unraveled this mystery, revealing yet another layer to my health journey. POTS is challenging by itself, as a simple change in posture can trigger a roller coaster ride of blood pressure plunges and heart rate spikes.

With every twist and turn, another chapter of my medical story is written. But once again, with faith, lots of prayers, love, support, and my medical team, I will PHight through this diagnosis, too.


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.

Comments

Hildi avatar

Hildi

Welcome to another adventure of “unselfish kneeling”. You are exceptional, you take all your obstacles with graceful hands. Most likely you are running out off the loving glue that put together all the pieces in your heart💔❤️❤️❤️, keep phighting, practice gratitude for all your love ones and all the ones in this forum that appreciates your kindness. Thanks, smile, keep great memories 🤩🤩🤩

Reply
Jen Cueva avatar

Jen Cueva

Hi Hildi, thanks a ton for reading and dropping a comment on my column about POTS. Absolutely, prayer does wonders, and my faith has been a huge support for me.

Really appreciate your kind and encouraging words. Fingers crossed, I'll catch you in the PH New forums soon. Take care, my PHriend.

Reply
MamaBear007 avatar

MamaBear007

What a terrifying experience for you and your family, Jen! I'm so glad they were wrong about your expiration date, but what a terrifying way to discover this newest diagnosis! I'm so sorry!

Reply
Jen Cueva avatar

Jen Cueva

Hey MamaBear, Yeah, it was super scary and I'm so glad they got it wrong. I'm just thankful I can get up and walk around now without feeling like I'm gonna pass out. It's definitely made me think more about how quickly I move from sitting to standing.

Hope you and the fam are doing good. I've really missed seeing you around the forums.

Thanks a ton for reading my column and for all the love and support. Take care, my PHriend.

Reply
Carol Volckmann avatar

Carol Volckmann

Just came back to the Forum after getting out of the hospital. Jen, I am so very sorry POTS has shown up . I know this too you will handle as you have with everything as Hildi said " with grace". I am sending you light, love ❤️ and support of this entire Forum to encourage your strength you receive from the Forum, your family, friends and your faith - just keep on going - we all love you soooo much!

Reply
Terry Lynn Gregrich avatar

Terry Lynn Gregrich

Hello special new friend,
I was diagnosed with PH this week. I havd all listed symptoms but being a strong Christian nurse,
my positive feelings prevail. Cu=ently I am hesitany to exercise until I know how serious the damages
Are to my heart. Yes... I am afraid of what lies ahead for me. Please keel me " in the loop "
I need you.

Reply
Jimi McIntosh avatar

Jimi McIntosh

Jen , sorry that they found another rare and exotic disease, as if , PH wasn't enough. When asked what ails me, I reply by naming what I didn't have as of this morning. I pray that you will handle this new one, like you and Manny have handled everything else. I think our savior gave my wife "long covid" so that can no longer complain about the time she spends taking care of me. I have heard of it, with symptoms similar to a hard dialysis treatment that leaves you tired, confused, anxious and wanting to recline in a dark room, letting time pass you by. I continue to pray for your healing and normalcy to your day. I look to you and the others PH suffers for Strength. Remember the old gospel song" Ask the Savior to save me and He will carry you through "

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.


A Conversation With Rare Disease Advocates