Health breakdown

In spring 2022, Ramirez felt sicker and weaker than she’d been since her 1987 diagnosis.

Between March and June, she had three cardiac catheterizations. The surgeon “saw the mess that the PH had created,” and said something like, “Enjoy life and do everything you can,” Ramirez recalls. “It was his way of saying, ‘The end is near.’ I knew at that point that something drastic had to be done.”

Ramirez, who’s attended six PHA conferences, went to Atlanta with a portable oxygen concentrator. She hadn’t seen many of her PHA friends since 2018, before the pandemic. Everyone wanted to know what was going on with her health.

After she came home from PHA 2022, her doctor, Terry Fortin at Duke University Medical Center, advised her to consider a referral for lung transplantation.

Making the tough decision

After two days of testing and consulting with the transplant committee, transplant doctor Jamie Todd at Duke confirmed Ramirez needed a new heart as well as lungs. Wear and tear from 36 years of PH had enlarged the pulmonary artery connecting the heart to the lungs too much to be repaired.

The realization shook her. “It went from one thing in my mind to something so much bigger,” Ramirez says. “I had 1,000 questions and couldn’t formulate one sentence because I was overwhelmed, confused and a little angry at the same time.”

Initially, Ramirez wasn’t sure she wanted to go through with the evaluation. But somewhere in the “seven days of non-stop testing,” she realized she was no longer saying, “If I do this.” She was having conversations like, “When this happens,” What do we have to do?” and “Where do we go?”

The evaluation was intense: meetings with doctors and a social worker, X-rays, blood work, a psychiatric review and more. The social worker explained that Duke transplant patients must live within 30 minutes of the hospital the entire time they’re in rehab, which had to be at Duke.

Ramirez received fundraising recommendations to help pay for temporary housing and other costs not covered by insurance and a list of companies offering short-term medical rentals. Insurance covered 100% of the $1.5 million-plus cost of the transplant surgery and hospital stay. But it didn’t cover copays for rehab and many transplant clinic visits.

After the evaluation, Ramirez signed a contract and committed to following strict protocols to get listed for transplantation.

There’s so much that you have to be prepared to tackle. Immediately. Because time is of the essence.

Transplant preparation

Back in Lexington, Ramirez and her husband Dale discussed living arrangements and financial concerns. Dale talked to his employer so he could work from the company’s Durham office. Within a month, the couple moved two miles from Duke University Hospital to a fully furnished apartment with utilities, internet and cable. After moving in, Ramirez started cardiopulmonary rehab classes for transplant patients. Her exercise class met two hours a day, five days a week. The participants became close.

“We helped each other through a very unusual time. You’re waiting for this massive surgery so you can continue living a different life, which you don’t know what it’s going to be. We were all kind of just living, working out and waiting.”

She and her caregivers took Zoom classes that covered “everything that you should prepare yourself for” and “everything you don’t want to hear.” The classes addressed medicine, food, exercise, recovery, differences between ICU and step-down, discharge, follow-up care and complications.

Ultimately, Diane and Dale stayed in Durham 11 months: four and a half months on the waiting list, and six and a half months for rehab, surgery and recovery.

The long wait

One of the hardest parts of waiting for organ transplants is experiencing what’s known as a dry run, Ramirez says.

“They’re traumatic. They call you and say we have organs for you. You get there and they do all this testing while they’re testing organs from the donor.”

For her first dry run, Ramirez was at the hospital for five hours. As they were wheeling her into the operating room, she saw a man with a cooler who gestured that the surgery was a no-go.

The second time, Ramirez was sedated in the operating room and had started transplant medication. After a few hours, she woke up to find nurses disconnecting tubes. “I thought, ‘Oh no. Clearly, they wouldn’t be taking any tubes away if I’d had the transplant.”

Ramirez stayed in the ICU about 16 hours to wean off anti-rejection medication, prednisone, heparin, antibiotics, fentanyl and propofol. Throughout the day, medical personnel explained they were shutting off or reducing a medication. Finally, they said she could go home.

“I held it together in ICU,” Ramirez said. “But when we walked into the apartment, I just sobbed.”

The next morning, Ramirez said she felt like she had been hit by a truck. She was too physically and emotionally exhausted to go to rehab.

The surgery

On Sept. 13, 2023, Ramirez received a third call. When lung transplant surgeon John Haney confirmed the transplant would happen, “The last thing I said in the operating room was, ‘Let’s do this,’ ” Ramirez recalls.

Ramirez woke up two days later. The surgeon left her chest open to make sure everything was working properly and closed it the night after surgery. On the second day, she was extubated. “When I woke up, I didn’t know what day it was. I was really confused.”

By that afternoon, Ramirez was marching in place, connected to IVs, machines, pumps and chest tubes. Five days after surgery, she was out of ICU. “It was a quick turn-around for me.”

Recovery

Ramirez’ recovery went so smoothly that word got around. “You’re the transplant golden child. We’ve all heard about you,” one doctor told her. Another said, “We just don’t have heart and lung stats like that.”

Despite her smooth recovery, Ramirez felt like she wasn’t getting enough air. Although her oxygen saturation was 100%, Ramirez had a hard time breathing, a common feeling among transplant recipients. The nurse gave her a liter of oxygen for comfort.

“It was completely psychological,” Ramirez says. “There’s a delay with your brain connecting to the fact that you’re actually breathing well and that it can let go of how you used to breathe.”

Temporary setbacks

About nine days later, Ramirez’ oxygen levels dropped low enough that she needed 4 liters of oxygen. Doctors performed a bronchoscopy and found a large mucus plug that caused the lungs to collapse at the bottom. When they removed the plug, her new lungs expanded.

Afterward, Ramirez felt like she could breathe in a way she never could before. “I was ready to walk down the hall. I wanted to do a marathon. I didn’t need oxygen again after that.”

Ramirez stayed in the hospital for 14 days. She was readmitted 10 days later when she got a bad infection and fluid had to be drained from around her heart. Even then, she felt better than she did before the transplant.

Over the next month in the hospital, Ramirez had three “really gnarly” emergency surgeries. But she was walking a mile a day with a rollator the last week, despite the tubes and drains connected to her heart and lungs.

After she was discharged, she got another infection, but she still went to the gym every day with a PICC line for IV antibiotics.

“Exercise is really important,” Ramirez says. “You lose muscle mass during surgery.”

In the six months before transplant surgery, Ramirez had been walking and riding a bike five days a week. After surgery, her legs were weak, and she felt like her muscles “were gone.”

Importance of caregivers

One of the requirements for transplant is to have a caregiving team in place to be listed. “There’s no way you go through it alone,” Ramirez says.

Ramirez enlisted the support of her sister-in-law Tammy and her best friend, Nicole Creech, whom she met many years ago through PHA. Creech, who has PH and sickle cell, traveled from Lexington, Kentucky, to Duke as soon as Diane’s husband Dale called.

Creech, treasurer of PHA’s Board of Trustees, came to the hospital every day for the first 10 days after the transplant. Creech and Dale took turns accompanying Ramirez on her hallway walks, taking notes and asking questions when Ramirez met with doctors, and relieving each other to rest or shower.

“She got to know all the nurses. They knew she was here for me.”

In the first few days, Dale slept in a recliner in the hospital room and wouldn’t leave his wife’s side. “You can’t take that kind of stuff for granted,” Ramirez says.

Life beyond PH

While Ramirez no longer needs PH medications, she now takes 33 pills a day, including 10 mg of prednisone, 8 mg of Prograf (tacrolimus) and 2,000 mg of Cellcept (mycophenolate) to prevent her body from rejecting the new organs.

The high doses of prednisone caused diabetes, which Ramirez says is common for many people after transplant. Sometimes the diabetes goes away, but some people need treatment for high glucose the rest of their lives.

Unlike her PH medications, the anti-rejection medications are generally more affordable, with better insurance coverage. The anti-rejection medications fall under Tier 2 in the insurance formulary, compared to Tier 5 for most PH drugs.

“With PH drugs, you’re talking about $300,000 a year and your copay is 33%. I haven’t come across anything that expensive [for the transplant drugs].”

Since transplant, Ramirez says her life has changed completely. But she will always be part of the PH community.

Nearly a year after surgery, Ramirez sometimes is surprised by what her body can do. “I knew I was going to be better. I just didn’t think I would be so much better so soon.”

With PH, she was never sure she could do certain activities and how much she could push herself without being wiped out the next day. Now, she participates in hourlong exercise classes.

“It’s a different way of thinking. I’m getting used to not having limitations. And with pulmonary hypertension, I was used to working within limitations. Now I wonder what else I can do.”