COOPERSTOWN – Mary Margaret Sohns of Cooperstown, who underwent a heart transplant earlier this year after Lyme Disease damaged hers beyond repair, told her story on a recent edition of “The Today Show” in hopes of inspiring others to educate themselves on Lyme disease.
Transplant Gives Cooperstown Woman
New Life After Battling Lyme Disease
By LIBBY CUDMORE • Special to www.AllOTSEGO.com
COOPERSTOWN – In March, after suffering debilitating heart conditions brought on by Lyme Disease six years before, Mary Margaret Sohns had a vision.
“I saw a big white box with a ribbon around it,” she said. “And I heard the theme from ‘The Golden Girls’.”
Her husband Matt came into the room with the phone in his hand. “He said it was for me, and that it was from Newark Beth Israel Medical Center,” she said. “They had a heart for me.”
And at 3 a.m. on March 3, after a surgery that took three hours, Sohns had a new heart.
“There is no way to thank a person for a gift that is priceless,” she said. “The donor not only helped me, but their lungs, kidneys, liver and other salvageable organs went to other people.”
On Sunday, Oct. 6, Sohns and her family walked in the “Heart & Sole” walk in New Jersey, raising $17,490 for the transplant team at Beth Israel. “The original goal was $5,000, but we surpassed that. Then $10,000, and we beat that, then $15,000, and we beat that!” she said.
Even daughter Maggie chipped in, raising $333 – a number that echoes the date and time that gave her back her mother. “She started to cry at the end of the walk because she was so happy her mommy was alive,” Sohns said.
She also invited to a dinner at the Global Lyme Alliance Gala on Thursday, Oct. 10, in New York City, along with her friend Brenda Michaels, Fly Creek Cider Mill co-owner, who also lives with Lyme Disease. Brenda’s brother, Charlie Palmer, was the chef for the evening.
In 2013, Sohns started experiencing “a myriad” of symptoms. “My vision went, I had cramping, I was irritable, I couldn’t sleep and I had issues with depth perception,” she said. “I went from running marathons to being unable to push a shopping cart or walk up to Stagecoach without stopping.”
Though she doesn’t remember ever getting a tick bite, she was diagnosed with Lyme Carditis, a rare condition when the Lyme bacteria enters the heart. “It’s typically reversible if you catch it between 45-60 days,” she said. “But because it took so long for me to get diagnosed, it wasn’t reversible.”
Though the got a pacemaker, she suffered from several setbacks, including a wire hitting her atrium. “I was chewing up pacemaker batteries,” she said. “I was having episodes where I would feel things like weather in my heart.”
She had several episodes in front of her daughter, Maggie. “I could feel it coming, so I told Maggie that if I went to the ground, to go get my medicine,” she said.
Finally, she was seen by a pulmonologist. “She couldn’t understand how I was still breathing with so few heartbeats,” she said. “She told me I should have had a new heart two years ago. I didn’t realize how bad it was; I just kept hoping I would get better.”
By March 2019, she had lost all hope. “I tried to smile and go about things,” she said. “But I kept telling Matt, ‘This is it.’”
But since her heart transplant, she’s made it her mission to educate local people about Lyme Disease.
“We are in Ground Zero for Lyme,” she said. “If you have symptoms, you need to see a Lyme-literate physician. Failure to diagnose or incomplete treatment means that your body still thinks there’s an aggravating organism, so it attacks your brain, your liver, your heart, your kidneys. There’s no-one-size-fits-all treatment.”
Because she didn’t see the tell-tale bullseye most people associate with a tick bite, she notes that anyone with symptoms like she had should see a doctor immediately. “A simple medication at the right time might have changed my life,” she said.
She also wants to remind people to make sure they sign up to be organ donors. “I can no longer be around sick people, so I can’t go back to being a pharmacist,” she said. “But I want to help people realize what a wonderful gift they can give by donating their organs.”
She has not yet met the family of her donor, although she hopes to.
“How do I thank that person?” she said. “I live my lfe and help others learn.”
COLUMN • Capitol Perspective
By State Sen. JAMES L. SEWARD • Special to www.AllOTSEGO.com
ALBANY – May is Lyme Disease Awareness Month and with the number of reported cases in New York rising each year, it is important to arm yourself and your family with the tools to avoid the disease when possible, and detect and treat when necessary.
Lyme disease is an infection, caused by bacteria, that is spread by the bite of an infected blacklegged tick. Lyme disease can affect the skin, joints, nervous system and/or heart. When detected early, it usually can be treated with oral antibiotics. If left untreated, it often causes serious health problems.
According to reports by the Centers for Disease Control (CDC), New York State has the third highest number of confirmed cases of Lyme disease in the country, trailing only our neighbors Pennsylvania and New Jersey. While this problem has historically been concentrated on Long Island and in the Hudson Valley, the state Department of Health reports that it is quickly migrating to other counties across New York.
Not all ticks carry the bacteria that cause Lyme disease; they become infected after feeding on infected animals such as mice or other small mammals. Transmission times for Lyme and other tick-borne diseases vary, and the sooner a tick is removed, the lower the risk of infection. Always check for ticks after spending time outdoors. You cannot get Lyme disease from another person or an infected animal.
Ticks can be active all months of the year when temperatures are above freezing. However, most tick encounters occur from April through November. Their preferred habitats are wooded areas and adjacent grasslands. Lawns and gardens at the edges of woods may also be home to blacklegged ticks. Ticks may feed on wild animals such as mice, deer, birds and raccoons, but domestic animals such as cats, dogs and horses can also carry the ticks closer to home.
I have worked to enact several new laws in New York State to improve our response to Lyme and other tick-borne diseases. We have also taken steps to upgrade education efforts and enhance efficiency when it comes to treatment and reporting measures.
Last year several measures I co-sponsored were signed into law, including:
- Senate bill 7171, requiring the state to study the effect Lyme and tick-borne diseases have on mental health;
- Senate bill 7170, establishing an expert-based Lyme and Tick-Borne Diseases Working Group to review current best practices for the diagnosis, treatment, and prevention of Lyme and TBDs;
- Senate bill 7242, requiring Lyme and tick-borne disease warning signs at all state-managed parks, including trail entryways and campgrounds.
Another bill that I have co-sponsored would serve as a major step forward for treatment of Lyme. The legislation would create specific protocol to notify individuals of their diagnoses related to Lyme and other TBDs. The bill would require the commissioner of health to work with health care providers to develop a standard protocol and patient notification for the diagnosis and treatment of Lyme and TBDs.
In discussing this issue with individuals who have contracted Lyme and doctors alike, it is clear that diagnosis and treatment plans vary greatly. We need to develop a uniform health care strategy that will increase positive outcomes so people aren’t left guessing if they are infected or if they will be left to struggle with a debilitating disease for the rest of their lives.
I have also helped secure state funding to combat Lyme. Last year, a record $1 million was included in the state budget for research, education and prevention efforts. Unfortunately, the new Senate majority failed to continue that commitment this year and the funding was not included in the new state budget – a major disappointment.
Additional information regarding Lyme disease prevention, how to remove a tick, and symptoms is available through the state Department of Health website at www.health.ny.gov. By knowing the facts and taking precautions, you can enjoy the outdoors and avoid Lyme disease.
James L. Seward, R-Milford, represents the 51st state Senate district, which includes Otsego and eight other counties.
ALBANY – State Sen. Jim Seward, R-Milford, has been appointed to the Senate Task Force on Lyme and Tick-Borne Diseases, charged with improving prevention, diagnosis, and treatment of these diseases.
“As chair of the Insurance Committee and representative of an area where tick-borne illnesses continue to spread, Senator Seward brings a valuable perspective that will help increase public awareness and prevent Lyme disease,” said Senate Majority Leader John Flanagan, who made the appointment. If you’ve noticed an increase of ticks in your garden during the summer, it may be within your best interest to get in touch with a pest control company similar to terminix arizona (if you live in and around this area) to finally get this issue resolved. You don’t want to issue to get worse.
Gibson’s Anti-Lyme Disease Bill
Over Hurdle In House Committee
U.S. Rep. Chris Gibson’s anti-Lyme Disease legislation – the Tick-borne Disease Research Transparency & Accountability Act of 2014 – has been voted out of the House Energy & Commerce Committee, his office announced today.
H.R. 4701, introduced by the 19th District Republican in May, seeks to prioritize federal research on Lyme and related diseases and give patients a seat at the table.