An Uncommon Bond
They finish each other’s sentences, laugh at the same time and nod when the other describes how the disease feels.
“It’s like you’ve run a marathon and all you’ve done is moved a cardboard box,” says 36-year-old Lana Eichhorn.
“You’re exhausted. Nothing there. No giddyup,” say 28-year-old Carmen Froseth.
The two sisters from Fargo face pulmonary arterial hypertension (PAH) -- the same disease that took their mother at age 33.
“I remember Mom was active and walked every day with her friends,” recalls Lana, who was 16 at the time. “Then she started having trouble with the hills. Next she couldn’t catch her breath going up a flight of stairs. She was diagnosed in April 1991 and passed away seven months later. The only thing that could’ve helped her was a double-lung and heart transplant, but she was diagnosed too late.”
Lana’s and Carmen’s symptoms last August included episodes of severe shortness of breath and declining energy. Their initial exams showed nothing unusual, but their family medical history triggered an echocardiogram. Both learned they had PAH.
“It was terrifying,” says Carmen.
“And it was happening to both of us at the same time,” says Lana.
Gradually their terror turned to hope, thank to 20 years of medical progress that continues today.
A closer look at PAH
“A lot of people have no idea what PAH is,” says Carmen. “The only reason we knew was our mom.”
A quick look:
*In PAH, the arteries of the lungs constrict abnormally, forcing the heart to work harder to pump blood. This can lead to heart damage and ultimately heart failure.
* PAH can have several causes. Often it’s secondary to heart disease, liver disease, lupus and other conditions. Inherited and isolated PAH such as Carmen’s and Lana’s is rare.
*Symptoms of PAH can include chest pain, dizziness, shortness of breath during activity, fatigue and more. Because these symptoms resemble those of more common problems, PAH can be difficult to diagnose.
* PAH has no cure, but today’s treatments can reduce symptoms, improve quality of life and slow progression of the disease. The medicines are very powerful, but expensive.
For Carmen and Lana, a key step was connecting with Dr. Heeraimangalore Manjunath, Sanford cardiologist who recently completed his fellowship training at Mayo Clinic. Today he’s one of a small group of physicians in the United States who’s board certified in advanced heart failure, including PAH. He and specially trained nurse Cindy Jurva provide precise, comprehensive care to patients at the Pulmonary Hypertension Clinic at Sanford Heart Center in Fargo.
“This is a very difficult disease, both for the patient and the medical team,” says Dr. Manjunath. “Key steps include identifying patients at risk for PAH, diagnosing the exact type of PAH, and carefully initiating patients on the correct group of medications.”
Carmen takes a combination of medications daily in addition to inhaler therapy every four hours. The powerful medicines have side effects, including severe headaches and fatigue.
“I had another echocardiogram in November and Dr. Manjunath couldn’t believe he was seeing the same person. The results were very encouraging,” says Carmen. “There are no guarantees how long this will work, but we just pray it continues.”
Because Lana’s disease was more advanced than Carmen’s, she required a catheter inserted in her chest to enable a continuous flow of medicine into her lungs. The effectiveness is not yet known, but she’s optimistic. “I’ve already noticed I’m not as tired and short of breath as I was before,” she says.
A different life
So far Lana and Carmen have been able to continue their full-time jobs. But the disease has had a big impact on other aspects of their lives:
* Married five years, Carmen recently learned she cannot have children because of the physical stress of childbearing and the harmful fetal effects of the medicines.
* Lana and her husband have two children, ages 2 and 7. Steps will be taken to ensure that if they have PAH, it will be diagnosed as early as possible.
* Limitations in activities. “You learn to live with them,” says Carmen. “You do what you can to make your everyday life work. And I’ve noticed we’re both so much more grateful for everything we’ve been blessed with.”
So what keeps these sisters fighting this harsh disease? “You fight for your family and for everyone you care about,” says Lana. “No, you can’t do everything you used to do, but you’re alive and that’s what matters most.”
They fight for each other, too. Carmen and Lana text, call or see each other almost daily. They bring the humor, hope and hugs that only sisters know, giving new meaning to an old saying: “A sister is a forever friend.”
Posted Date: February 2012