PH and Transplant Can Feel Like the Stuff Nightmares Are Made Of

Colleen Steele avatar

by Colleen Steele |

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I recently dreamed that I was walking toward a hospital room to visit my son, Cullen. A doctor stopped and told me that Cullen had died.

I walked away in a state of shock, but then quickly returned in tears and begged for a chance to see him. When I took hold of Cullen’s hand and looked down at him, I noticed he was still breathing. The dream ended when I screamed for help. When I awoke, I felt panicked, a sensation that stayed with me all day.

This nightmare was recent, but since Cullen’s heart and double-lung transplant, I don’t experience them as frequently as I did when he had pulmonary hypertension (PH).

Cullen is doing very well, but has recently experienced some minor random episodes of chest discomfort and shortness of breath. I suspect these changes and his upcoming seventh transplant anniversary in August triggered my nightmare. They are reminders of the tremendous odds he has beaten, and that there will always be a risk of those odds catching up to him.

Zebra stripes and feelings of guilt also tend to haunt my dreams.

Zebras are commonly associated with PH and other rare diseases that are not easily diagnosed.

According to the PH Association, “Physicians often are taught to think of a common diagnosis first, not rare ones, therefore, ‘When you hear hoof beats, think horses, not zebras.’”

Cullen was one of many PH patients misdiagnosed for years because doctors chased the wrong hoofbeats. Since that experience, I keep my eyes and ears open for rarities, and advocate for others to do the same.

My efforts continue after Cullen’s transplant because the uncommon can still happen.

Soon after transplant, Cullen developed a rare immunosuppressant side effect called posterior reversible encephalopathy syndrome. It caused parts of Cullen’s brain to swell, triggering horrific migraines and seizures. It took four months for Cullen to recover, but thankfully, it never returned. However, we continue to monitor headaches and other side effects in case it does.

Cullen also had close calls with other rare conditions, such as post-transplant lymphoproliferative disease and possible parasitic infection contracted by his donor. Fortunately, tests determined he had neither, but the fear of these unknowns left a lasting impression on us.

It’s common for transplant recipients to experience some type of rejection. Over the years, Cullen has teetered between the mild and the more concerning. Bronchiolitis obliterans syndrome (BOS) is a common but threatening form of chronic lung allograft dysfunction. Cullen began battling this five years ago.

We placed our hopes in extracorporeal photopheresis (ECP), an unproven and rare therapy for treating chronic solid organ rejection. Sometimes treatments come in zebra stripes, too. ECP worked for Cullen. It couldn’t reverse the previous damage done by BOS, but it slowed the progression down significantly. Cullen was able to stop treatments and has gone years rejection-free.

He currently struggles with kidney disease, commonly caused by immunosuppressants in transplant recipients, but he remains stable at stage 3.

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I am grateful that Cullen has overcome so much and continues to jump over hurdles, but years of watching him do well have changed me. I don’t want to listen for horse or zebra hooves, and if I catch stripes in the corner of my eye, I’m tempted to look away.

When Cullen recently mentioned shortness of breath and discomfort, all of my PH and transplant mom experience went out the window. It was easier and more reassuring to attribute his symptoms to more likely causes: the hot and humid weather, a mild case of sunburn, stress about college courses, a medication side effect, too little water, maybe he slept weird, etc.

One of these might have been the cause because he feels better now, but good advocating would have been encouraging him to contact a doctor rather than waiting out the symptoms. My nightmare, as I mentioned earlier, reminded me of this. Being declared deceased when still alive would be awful, but misdiagnosing a significant problem as a minor one can be scary, too.

I have snapped out of the allure of thinking everything is fine and returned to being the cautiously optimistic caregiver that I believe has served Cullen well all these years. Improvement or not, we will be contacting and updating his doctor, and scheduling recommended appointments.

Nightmares aren’t fun, and when we have them, our first thought might be to prevent future ones. I think the best way to do that is to evaluate the dream and consider what our self-consciousness might be trying to tell us.

Dealing with the disease sometimes means dealing with nightmares. They are a symptom just like any other and can affect both patient and caregiver.


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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