Friday, February 14, 2020

Windham woman shares personal experience of congestive heart failure diagnosis at the age of 35

By Elizabeth Richards

Shelly Afthim is a wife, mother, community volunteer, and heart failure patient.  Her story is one all women should hear.

Heart disease causes one in three deaths in women each year. Forty-five percent of women over the age of 20 have some kind of cardiovascular disease.  More women die from heart disease than from all types of cancer combined. These are startling statistics that Afthim didn’t know before her journey with heart failure began.

Shelly Afthim
In 2006, Afthim thought she had a bad case of bronchitis. She had a cough that wouldn’t go away, extreme fatigue, and shortness of breath. One night, as she fell asleep, she startled awake and found herself gasping for air.

She drove herself to the hospital, something she has since learned you should never do when having trouble breathing or heart-related symptoms. Once there, she had a chest x-ray and they found something she’d never expected: she had congestive heart failure. She was 35 years old.

“You would have never thought that it was my heart,” she said. There was no known family history of heart disease, although several years later her older sister died in her sleep at the age of 50 from cardiomyopathy.

After about a week in the hospital, Afthim was sent home, with a visiting nurse checking in on her every other day. She’d been home less than two weeks when her blood pressure, pulse and oxygen levels were so low the nurse called the doctor, who told her she had to immediately get to the hospital.  The numbers were so low, her doctor said, that she was at risk of sudden death or stroke. 

Afthim went to Mercy Hospital, but they couldn’t do what she needed, so they planned to transfer her to Maine Medical Center. As she waited to be transferred, a nurse practitioner discovered that the blood work from her first visit had showed a positive test for Lyme disease.  She was put on an antibiotic to treat the Lyme disease, which is assumed to be the cause of her heart problems. After being treated at Mercy for a week, she was transferred to Maine Medical Center where a defibrillator was implanted. 

After that, Afthim said, she thought life would be back to normal. “I kind of looked at it like my security blanket, like ‘I have this defibrillator, my heart’s going to be okay’,” she said. But the Lyme disease became a chronic condition that caused other problems such as pain throughout her body and severe memory issues that impacted her job. 

At the same time, Afthim received more bad news: her defibrillator had been recalled.  Since removing it required a risky surgery, the unit was reprogrammed to send a warning signal if it was, indeed, defective.  A year later, that alarm sounded.

Afthim went to Brigham and Women’s hospital, where the surgeons had more experience with that type of surgery, and the defibrillator was removed and replaced. Once again, she thought all was well.
Unfortunately, her difficulties weren’t over yet. After beginning a new medication to help with her Lyme disease, an interaction with her heart caused enough irregular heartbeats that she needed a heart ablation.

Finally, Afthim started to recover. She began volunteering for the American Heart Association, was the Heart Walk Survivor Story in 2007, and in 2016 she was one of the spokeswomen for Go Red for Women.  She then decided to go back to work, taking a position at the American Heart Association. 
Within six to eight months of returning to work, she began having symptoms again. Her ejection fraction, which describes the amount of blood pumped back into your system with each beat, was below 15%.  The typical ejection fraction for a healthy heart is 60-70%.  In 2006, Afthim’s had been 18%, and she’d brought it back to 40% by the time she returned to work.  “Now, I had made it even worse,” she said. “Instead of focusing on my health, I decided to focus on a job again and that wasn’t the right thing for me to do.” 

Her doctors began discussing a heart transplant, but she asked for time to improve the numbers on her own.  With the help of a new prescription that wasn’t available before, her heart has rebounded to 40% again.  “I’ve learned to accept my limitations now,” Afthim said.  She says she has a great support network, including friends in the community as well as other survivors.  She volunteers for the American Heart Association, Windham Boosters, and other community outreach efforts, and has hobbies that keep her busy.  “I just try to balance my life now and realize that having a job doesn’t define who you are as a person,” she said. “Taking care of myself and being here for my kids is the biggest thing for me.”

Afthim has been asked to be the keynote survivor speaker at the Go Red for Women luncheon in Portland on March 19th, to share her story and help people understand that heart disease doesn’t always mean a heart attack or stroke. “Sometimes there are things like heart failure that is just something that people have to live with,” she said. The luncheon is an annual event that often has 600 people in attendance, with speakers and breakout sessions to learn about heart disease. 

For women, it’s important to know the signs and symptoms, which may be different than symptoms in men, Afthim said.  Often women are too busy taking care of others to recognize the signs, she added.

Although she lives with two chronic conditions, neither is obvious from the outside.  “I think It’s really important to have people that you trust, and people who support you through it because you don’t look sick,” Afthim said.  “People see me, and they think I’m fine, but they don’t understand that if I was having a bad day, you wouldn’t see me at all. I’d be staying at home and I wouldn’t be out in public.”        

“I really feel like we need to do a better job, especially with women, to make sure that they do know that their greatest health threat is their heart,” Afthim said. Although women find it difficult to take time for themselves, she said, there are things they can do in their daily lives to prevent heart disease, including not smoking, eating right, and knowing important numbers like blood pressure and cholesterol levels. “There are things that you can do yourself to lower your risks,” she said.  

Although Afthim is no longer the director of the Southern Maine Heart Walk, she’ll be walking with a team of family and friends on May 17, 2020.  On her fundraising page, she wrote “I walk because I know that with every step, I’m making a difference in someone’s life. I know that I am alive today because someone walked for me, so that I could survive.”

Donations to the team can be made through the website by clicking the Heart Walk page and searching Afthim’s name.

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