How it feels waiting to receive a gift of life

Samantha is just thirty-six years old and on a waiting list for a double lung transplant.

She’s not a smoker and never taken drugs. She’s not overweight. She’s had the benefit of good medical health insurance her entire life. And yet, she’s been on a sharp downward spiral for the past 8 years.

Yep, it’s been a pretty crazy journey,” Samantha sighs. “I haven’t been able to work since 2018. I had to move back home as my health deteriorated, and sign up for Medicare. This is certainly not the life I expected.”

That’s an understatement. Through no fault of her own, she has a condition called pulmonary hypertension, diagnosed in 2017 after three years of testing, hospitalizations, trips to Mayo Clinic, Cleveland Clinic, National Institutes of Health, and multiple heavy-duty medications. Nothing has helped her.

There is no known cure for pulmonary hypertension, a condition that affects the way oxygen moves from alveoli to the capillaries lining the alveolar walls. In Samantha’s case, her lungs are not fresh and pink and working to provide hemoglobin to her red blood cells. Instead, her alveoli are rigid, scarred, and non-compliant. In essence, they are slowly shutting down. And that causes her heart to work twice as hard to provide her body with oxygen, so it has become dangerously enlarged – three times its normal size.

Samantha carts around an oxygen tank with her wherever she goes. She gets short of breath very easily. She is always, always exhausted – no matter how much sleep she gets.

Having found the ideal transplant hospital for her needs, Samantha moved to a tiny apartment near the hospital three months ago. Her sister, mother and her dog came with her for moral (and physical) support. She began pre-transplant physical therapy right away.

She felt hope when she was formally accepted onto the National Lung Registry transplant list in mid-November 2021. And then things began happening with lightning speed. Within twelve hours of being listed, she was notified there was lung match. The call came in at 2 AM.

Wow, so quick! Samantha was told she had two hours to get ready. She stopped taking her blood thinner – and arrived at the hospital ER at 7 AM.

Feeling elated and scared, Samantha checked in, got wheeled up to surgery center and said a tearful goodbye to her mother and sister. Family had to wait outside the surgery center, so Samantha donned a gown and socks, and waited four hours. Nurses came and went, inserting IVs, getting new X-rays, and taking 20 vials of blood. No food or water allowed. 

“I was feeling a ton of mixed emotions as I waited to get a foreign organ placed into my body — pretty terrifying to consider. My mind was just racing…”

Samantha’s cell phone rang four hours after entering the hospital. It’s a call from her transplant coordinator. “I’m sorry, Samantha, but It’s a no go. The lungs are no good. Hopefully next time will be a successful match.”

The news was a little shocking, but Samantha had been warned each donor organ transplant rate had a 30% risk of not being a good fit. She remembers thinking, “Okay, maybe next time will be the one.”

Unfortunately, that was just her first “almost” lung transplant. Unbeknownst to her, she’d have three more trial runs.

The second ‘almost’ was much more intense,” relays Samantha. “Once again, I said a tearful goodbye to my mom and sister. This time I was actually placed on the operating table with arms and body strapped down. At least 15 people were buzzing around me. The machinery around me was loud and overwhelming. Just before the gas mask was placed over my face someone looked down at a phone and shouted, “Wait a second! Let me find out what’s going on.” 

“My anesthesiologist came into the OR and told me these lungs were also no good. The surgeon had detected too much scarring. Then he brightened, saying, “The good news is the transplant team caught this before we started.” 

As tears rolled down Samantha’s cheeks, she felt the ER go from “organized chaos to crickets” in a matter of seconds. She felt just as disconnected from reality as the tethers and IVs that were being disconnected from her body.

“My third “false alarm” was easier,” said Samantha. “I was placed on standby at home in my apartment, told to “Stay near your phone, we’ll call you for updates.” So, the three of us didn’t leave the house for six hours. Finally, the lung transplant coordinator called. Another no go.” 

Unbelievably, there was a fourth ‘almost’ just last week. Another four hour wait alone in pre-op. Another twenty vials of blood taken. And more X-rays. Another disappointment – not a quality match.

“Nobody wants mediocre testing of a transplant organ. Of course we all want as perfect a match as possible,” says Samantha. “But the process is pretty exhausting, physically and emotionally.”

As this interview was completed, Samantha, her mother and sister are planning a quiet Christmas together in their little apartment – unless of course, another possible match comes through.

All three have hope, and faith… for Samantha’s future in the year ahead.

The transplant system in the United States has evolved to become a gem of the healthcare system. As it has grown there is more need than ever for enhanced transparency and communication. We need to ensure that patients like Samantha get the organs they are allocated as soon as possible, and the care necessary for surgeons to optimize their outcomes. 

At MediGO we care for the journey of every organ that passes through our system, in order to make the entire industry more efficient and effective.