Waiting Room Warriors Battle Worry and Fear

It is said that good things come to those who wait. But when you are waiting for a loved one to get out of surgery, patience has nothing to do with the outcome. Neither does worrying.

Fear is difficult to subdue under these circumstances. The longer the wait, the more concerned you might become that the result will not be good.

My son was diagnosed with pulmonary hypertension (PH) at the age of 8. He fought this disease for five years and endured many procedures. He’s had several central-line placements, an atrial septostomy, and I lost count of how many heart catheterizations.

He is now five years post-transplant. The biggest surgery of his life was, of course, the heart and double-lung transplant. Following that have been many cardiac catheterizations, bronchoscopes, heart and lung biopsies, a port and tunneled apheresis catheter placement, and myringotomy tubes placed in his ears.

No matter what kind of surgery a patient faces or how many times they’ve had it done before, medical history is discussed thoroughly as well as the precautions that will be taken. If that isn’t intimidating enough, listening to the litany of risks involved can leave loved ones pacing the waiting room floor.

My son’s first stint in an operating room was a right heart catheterization to diagnose PH and its severity. The necessity of this procedure and the risks involved were explained in detail by his team. This left me alternating between numb and jittery as I waited for word that he was in recovery. All I could do to pass the time was to watch the clock. That made waiting feel like an eternity.

Future procedures took place at a different hospital. This facility displays an update board to inform loved ones when surgery begins and ends and when the patient is taken into recovery. I have compulsively watched that more than the clock.

What 10 years of experience in waiting rooms has taught me is that there is no way to take my mind off the worry, but there are things I can do to make time go faster.

First, I sit quietly for a moment, close my eyes and say a prayer for my son, and try to calm my mind as best I can. Next, I briefly leave the waiting room for a cup of coffee, to make phone calls, and to post updates to social media and my son’s CaringBridge site. I have learned to trust that my cellphone will be called if there is an important update.

Depending on the estimated time of surgery, I will also peruse the gift store. This is my favorite thing to do while waiting because it’s cheerful and makes me feel hopeful. I enjoy putting together gift bags for my son while he’s in surgery and for his brother who is at home waiting for news.

I immediately check the board when I return, but I have never been gone long enough to discover that he is already out of surgery. The wait continues, and my mind starts racing again.

What I do next depends on the severity of the situation. Sometimes I can read a book, but often I am too distracted. Skimming magazines keeps me from obsessively watching for updates.

If I’m not too emotionally exhausted, crossword puzzles or word searches help keep my mind busy. But my guilty pleasure is mindless cellphone games. When I play them, I’m on autopilot. Before I know it, the wait is over and I’m called to recovery.

What about the long, excruciating wait during his transplant? For a long time, I felt shocked and guilt-ridden that I fell asleep. When I anticipated that day, never did I picture myself closing my eyes for even a second.

But the weeks leading up to transplant were emotionally draining. I watched my son decline further every day, increasing my fear that he wouldn’t make it to transplant. The call came at 7 a.m. one August day. He was airlifted from Seattle Children’s Hospital to Lucile Packard Children’s Hospital Stanford, and at 12:30 a.m. the following day, surgery finally began.

A dear friend who is also a PH transplant mom stayed with me. I fell asleep and was embarrassed when I woke and realized she had left for work. In my mind, I should have been up worrying instead of sleeping! But after my son’s eight-hour surgery, I was rested and ready to help him tackle his long road to recovery.

No matter how we caregivers get through it, we are all worried, weary-eyed, waiting room warriors.

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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.