Miracle on Wheels - northernexpress.com

Posted: 26 Oct 2019 07:06 AM PDT

Meet the 30-year-old about to test her newly transplanted heart and lungs at the 2019 Iceman Cometh race.

By Al Parker | Oct. 26, 2019

Camille Frede (pictured above, center) was only 4 years old when her parents, Nancy and Eric Frede, received the devastating news that their daughter would be lucky to live to age 9.

Diagnosed with pulmonary hypertension (PH), young Camille constantly struggled with health problems. She was in and out of hospitals for years.

Now, 26 years later, the Grand Rapids native is living with a new heart and lungs and, on Nov. 2, will ride in the 2019 Bell's Iceman Cometh Challenge mountain bike race from Kalkaska to Traverse City.

She won't tackle the 30-mile point-to-point race alone. She'll ride with family members; her doctor, Aaron Waxman; and her exercise physiologist, Julie Tracey — both of whom are flying in from Boston to compete with her (both are pictured above).

"My parents are cyclists and have ridden in the Iceman for years, and I always came up to support them," said Camille. "This will be my first time riding in it. I'm not trying to set any records — I just want to finish."

"Camille has always had hopes and goals," said mom Nancy. "It will be mentally and physically challenging for my daughter to do 30 miles."

Finishing is an amazing accomplishment for any of the 5,000 entrants who brave snow, sleet, rain, and whatever else northern Michigan dumps on the competitors each year, but it'd be extra extraordinary for Camille; the Grand Rapids woman underwent a heart-and-double-lung transplant just last year. After being on the transplant list for about four months, Camille went into surgery on March 25, 2018, at Brigham and Women's Hospital in Boston.

A RARITY
The procedure isn't a common one. There were only 32 heart-lung transplants in the nation last year, according to the United Network for Organ Sharing. (There were 21,167 kidney transplants and 3,408 heart transplants during that same period.) Camille's heart-lung transplant was the Boston hospital's first heart-and-double-lung transplant in 22 years.

Pulmonary hypertension is a condition where the patient has high blood pressure in the heart-to-lung system. It causes the blood vessels in the lungs to become rigid instead of elastic, which makes it difficult for the heart to pump blood through the lungs to pick up the oxygen it requires. It is a fatal condition.

According to the Centers for Disease Control and Prevention, pulmonary hypertension occurs at all ages, and the incidence increases with age. It's more common among women, non-Hispanic blacks, and people aged 75 or older.

Many patients say living with PH is like breathing through a straw every day. They often have trouble with simple physical activities like climbing stairs or eating without getting out of breath.

Despite her doctors' grim prognosis during her childhood, Camille sought to live as normal life as possible. In middle school she played volleyball, was a cheerleader, and ran with friends at Holy Spirit Catholic School in Grand Rapids. She earned a bachelor's degree in science and nursing from Calvin College and worked as a surgery nurse for years. She's now studying to become a physician's assistant.

HER OWN BEST ADVOCATE
Camille had long refused to let PH rule her life, but after more than two decades of battling the condition, her body began to fail in 2016. Ever the fighter, she refused to believe that her adventure was ending at only 28 years old.

Camille threw herself into researching ways to save her own life and learned that the heart and double-lung transplant could be the key to her survival. She worked to make it happen at Brigham and Women's Hospital in Boston under the care of Dr. Waxman. By February 2017, Camille's health had deteriorated to the point that she was admitted to the Boston facility, where she would await the transplant that wouldn't come for more than a year later.

Going into surgery, Camille admits she was frightened but also excited. She spent 10 hours in the operating room. "I wanted to live and didn't want to die," she told reporters after surgery. "And I prayed for the family of the donor, to have them find some peace."

She spent three days with her chest open to dry out the surgical area, then was discharged from the hospital 10 days after the surgery.

Later, listening to her new heart and lungs, Camille said they sounded so strong and clear, compared to her old heart and lungs, which sounded so sickly.

Post-surgery, she remained in Boston, unable to work and constantly monitored for signs that her body was rejecting the new organs. She was on more than two dozen supplements and medications, taking pills four times a day, taking insulin, and getting checkups twice a week.

"I was anxious about it," she admitted. "Rejection is one of the fears, and it's hard to overcome."

But along with the anxiety came something unexpected: "I got kind of bored."

SEIZING LIFE, PART II
Perhaps the sign that Camille began regaining her spirit and health was when she began setting some new goals. First, to become a physician assistant. The former Spectrum Health Surgical Nurse applied to Western Michigan University and was asked to come for an interview. "After the surgery, I wore a mask to the interview," she recalled with a smile. "They accepted me right away."

Then, rehab. Camille started slowly, taking stairs instead of the elevator, but nine weeks later, she was hiking. Not long after she took up running, moving slowly initially, then working up to a 5K race.

Three months after the surgery Camille was riding a bike, a longtime family activity. She eventually qualified to compete in the World Transplant Games in Newcastle, U.K., in August. She finished 4thin the time trials and finished 5thin the 30K event.

With 30K under her belt, it stood to reason that the 30-mile Iceman, a race her father, Eric, has tackled about 20 times, would next on her list. As of press time, the weather for the upcoming race promises to be Iceman-worthy: 40 degrees, raining, windy, and sloppy. Perhaps not surprisingly, Camille isn't giving the small stuff, like weather conditions, much thought. Her eyes are on the prize — finishing — and sharing some worthwhile life advice with others: "Recycle your organs," she said. "We have all sorts of recycling. We save the whales and other animals. Let's save the humans."

Camille Frede's quest to make the most of her new heart and lungs isn't over after the Nov. 2 Iceman Cometh Race. She plans to attend the 2020 Transplant Games in New Jersey and the 2021 games in Houston as well. Follow her journey at www.camillefrede.com.

Root On the Riders
The 2019 Bells Beer Iceman Cometh Challenge is a point-to-point mountain bike race traditionally held on the first Saturday of November. The race starts at the Kalkaska Airport and finishes 30 miles later, at Timber Ridge RV & Recreation Resort, east of Traverse City, where crowds gather to cheer on and welcome riders. The course consists of dirt roads, two-tracks, abandoned railroad beds, and the VASA trail. It crosses only one paved road (Williamsburg Road, at mile 17) as it winds through the hilly terrain of the Pere Marquette State Forest. The Iceman attracts cyclists of all ages from all over the world whose ability levels vary from first-time racers to Olympians. Learn more at www.iceman.com.

Pulmonary Hypertension Survival Predicted by Cardiopulmonary Reserve Index - Pulmonology Advisor

Posted: 22 May 2019 12:00 AM PDT

This article is part of Pulmonology Advisor's coverage of the American Thoracic Society International Conference, taking place in Dallas, Texas. Our staff will report on medical research related to asthma and other respiratory conditions, conducted by experts in the field. Check back regularly for more news from ATS 2019.

DALLAS — The cardiopulmonary reserve index (CPRI) may be an effective predictor of survival in patients with pulmonary hypertension (PH), particularly in patients with PH caused by left heart disease (LHD), according to study findings presented at the American Thoracic Society International Conference held May 17-22, in Dallas, Texas.

"The [cardiovascular reserve index] has been proposed as an estimate of cardiovascular reserve based on stroke volume, systemic vascular resistance, respiratory rate, and body surface area in various conditions including heart failure and shock," researchers wrote. Therefore, they sought to adapt the cardiovascular reserve index formula to pulmonary circulation to determine whether it could predict survival in patients with PH.

The researchers retrospectively obtained data from a total of 4363 patients who underwent a first diagnostic right heart catheterization between 1996 and 2006. A total of 1710 patients were diagnosed with PH; 125 cases of pulmonary arterial hypertension, 1410 cases of PH-LHD, 26 cases with PH caused by lung diseases and/or hypoxia, 105 cases with chronic thromboembolic PH, and 1 case with PH from unclear/multifactorial mechanisms. The following simplified formula was used to calculate CPRI: (20*mean pulmonary arterial pressure—mean pulmonary arterial wedge pressure)/(heart rate*body surface area).

In the overall PH group, CPRI was a predictor of survival according to the Cox regression analysis (hazard ratio [HR], 2.105; 95% CI, 1.319-3.360; P =.002). In a subgroup analysis stratified by PH groups, CPRI was only predictive of survival in patients with PH-LHD (HR, 4.370; 95% CI, 2.109-9.054; P <.001). The inclusion of pulmonary vascular resistance (HR, 1.017; 95% CI, 0.958-1.079; P =.587) in a multivariate Cox regression model demonstrated that CPRI was a persistent predictor of prognosis (HR, 3.640; 95% CI, 1.017-14.653; P =.046). Both CPRI (HR, 12.190; 95% CI, 4.310-34.478; P <.001) and diastolic pulmonary vascular pressure gradient (HR, 0.979; 95% CI, 0.936-0.995; P =.001) were considered multivariable predictors of PH-LHD prognosis.

The researchers noted that further studies are needed to determine why CPRI is only a predictor of survival in PH-LHD and whether it could be helpful in guiding treatment.

Reference

Shafran I, Gerges C, Gerges M, Segel M, Lang IM. Cardiopulmonary reserve index as predictor of survival in patients with pulmonary hypertension due to left heart disease. Presented at: the American Thoracic Society International Conference; May 22, 2019; Dallas, TX. Abstract A6794/P995.

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