One night, Janet Simmons could lay down to sleep, and the next night she couldn’t.
“I had to start sitting up a little higher in bed each night,” says the Detroit resident, who at that point had been on heart medication for a year. “Eventually, I was sitting straight up during the night. I also didn’t have much energy, and had some shortness of breath.”
Janet saw her primary care physician, who took a chest X-ray that showed she had an enlarged heart, which had grown gradually over time. After more tests and referrals, she met with the cardiology team at Henry Ford Hospital.
A life-changing decision
“They set me down, talked to my family and told me I needed a left ventricular assist device, and that I would also need a heart transplant,” Janet says. “The medications weren’t doing enough to address my heart failure.”
The Henry Ford team brought out a model of the left ventricular assist device (LVAD) to show it to Janet and her family, and asked her if she would be willing to undergo this life-changing procedure. An LVAD is an implantable device that helps a weakened heart pump blood to the rest of the body.
“I fell in love with Dr. Williams,” Janet says. “She was so clear with me, and she put it out there, A-B-C. I understood everything she told me, the good and the bad. And I knew this was the only way I was going to be able to live and be with my family. I have two daughters, two granddaughters and now one great granddaughter.” Janet also has an identical twin sister.
In addition to being there for family, Janet knew that she would need to get the procedure if she wanted to get back to her job, which she loved.
As a warrant officer for the State of Michigan, Janet worked in the field, helping local businesses on their tax issues. “It’s tough, because you’re out there telling people you have to pay me money, but I enjoyed my job, and I helped people salvage their businesses. I’m a people person, and I met probably 15,000 people over the years, from all walks of life.”
Still, Janet recognized that until she dealt with her heart failure, it wasn’t safe for her to be working in the field, and that she was potentially endangering herself and others. So she went on medical leave.
The procedure, and more changes
Following her procedure, Janet adjusted to life with an LVAD pretty quickly. It helped that she noticed immediate improvement, with all of her pre-LVAD symptoms disappearing.
Still, one area was particularly tough to adjust to: Not being able to take a shower.
“A hot shower makes you feel good, especially at the end of the day,” Janet says. “I was desperate for one, and I complained to my care team until they got me a shower kit.”
This involved extensive preparation between Janet and her granddaughter, putting the LVAD in a special bag so that it didn’t get wet and wrapping all equipment elements in plastic wrap.
“After it was done, I fell out laughing,” Janet said. “An hour’s worth of preparation for a 20-minute shower. It totally wasn’t worth it, and I told my Henry Ford team, I will never bother you about taking a shower again.”
Another major adjustment was travel.
“We’ve always been a traveling family,” Janet says. “I’ve been to Germany, I’ve been to Paris, I love to travel internationally. But now I can only travel in the U.S., and when I do, I need to notify Henry Ford so they can tell me where I can go if I have an issue with my LVAD.”
Janet also had to sell her house since she lived alone, and buy a place closer to her family.
But the biggest blow came when she wasn’t able to return to her beloved job. After being on medical leave for three years and being placed on the heart transplant list, she became ineligible to return to work and had to retire.
The transplant battle and a new diagnosis
During this time, Janet also had to leave Henry Ford. Due to an insurance issue with her potential future heart transplant, Janet went to another health system. While she was sad to leave, and she missed her Henry Ford team, she met a new heart failure specialist there: Jennifer Cowger, M.D.
“I loved meeting with Dr. Cowger, so when she came to me one day and told me she was leaving to go to another health system, I was upset,” Janet says.
Janet did her research, and began working to solve the insurance issue. She made some calls, and found out that it would be possible to transfer back to Henry Ford.
“We started the paperwork and got the transfer in place,” Janet says. “The first day I saw Dr. Williams in the hallway back at Henry Ford, I was happy as a lark and I hugged her. I saw Dr. Cowger shortly after that, and I was so happy to see her too. It was a great reunion with both, who are now my doctors again.”
Unfortunately, after her long journey to get to the right team and on the path to a heart transplant, disaster struck for Janet when she was diagnosed with breast cancer. While her Henry Ford team was able to treat it with radiation, she was taken off the transplant list during this time. Given her age, she won’t be able to go back on the list, and the LVAD has become her permanent lifeline.
Not taking life for granted
“Life is a very valuable thing, and people take so much for granted,” Janet says. “I probably did myself, never expecting anything like this to happen to me. I’ve grown very aware and respectful of life.”
These days, Janet focuses on living her best life. She has her faith, three Shih Tzus that she walks five times a day and her family, including her granddaughter and 13-month-old great granddaughter who live with her. She’s even working on an extensive home renovation.
“I believe that this was supposed to be my journey, and I have an appreciation for just being here,” Janet says. “Not a lot of people would have survived what I did.”
She’s also very thankful for the care she’s received to help get her this far.
“If these doctors were not as experienced as they are, I would have been gone a long time ago,” Janet says. “And Henry Ford’s staff are some of the most wonderful people that I’ve ever encountered in the medical field.”