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Ken grew up part of a hard-working, middle-class family. He learned, at a young age, the importance of a good work ethic and to work hard to provide for your family. Which he did all his life, from ages 15-58. All that is in jeopardy now though, as Ken has been diagnosed with genetic cardiac Amyloidosis. More on that in a minute …
Ken had been having intermittent issues over the past 10 years or so. Rheumatoid Arthritis, carpal tunnel, leaky heart valve, etc. Then came the congestive heart failure. Still, he was being managed, and stable, so forward we forged. Jump to January 2022. Again, heart failure … this time, he’d be in heart failure several times, along with dehydration, before we would get answers. He’d been admitted to the hospital several times with no resolution. After some apprehension, we sought a second opinion. It’s there that our journey began. Almost immediately, doctors at the new hospital suspected Amyloidosis. After a month of tests, scans, bloodwork, and genetic testing, in May of 2022, we got the official diagnosis — Amyloidosis. More specifically, ATTR-CM. Hereditary Cardiac Amyloidosis. Hereditary Amyloidosis is a disease in which abnormal, misshapen protein (amyloid) deposits form in tissues and/or organs in the body. In Ken’s case, the amyloid proteins are depositing within the wall of his heart. Shortness of breath, extreme fatigue, neuropathy, dizziness, and leg swelling are some of the symptoms one may experience with cardiac myopathy. Familial amyloidosis occurs in 1 out of 100,000 (1%) Caucasian people, slightly higher at 4% in African Americans. Left untreated, Amyloidosis is fatal. In the case of Cardiac Amyloidosis, typically 12-18 months will pass before amyloid buildup in the heart becomes fatal. Ken’s treatments include Vyndamax, an oral pill, and IV infusions of Patisiran every 3 weeks. Despite treatment, the progression of this disease and the damage it has done to Ken’s heart have taken its toll. After being found unresponsive one night, a defibrillator/pacemaker was implanted to help pace his heart and /or shock if needed. However, despite the device implantation, Ken is now in need of a heart transplant. A VERY major surgery; life altering actually! Very scary, very complicated, and verrrry expensive. Testing to list, continual checks while we wait, transplant, rehab, aftercare, lifelong medications, etc.
With your help, we can help ensure Ken gets a chance at the life he has worked so hard for. Please help us help him. Thank You from the bottom of our hearts for your support!!
“Team Ken – in it to win life!”
** Family and friends of Ken Sims are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with transplantation. Ken has chosen to fundraise for
Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800-642-8399.
The first day we've be dreading. We knew this was coming. But still not ready. We spent July 4th in Phila, at Jennerson. Ken had a catheterization scheduled for July 5th. That day, the 5th, we learned his cardiac output had severely declined and his heart wasn't pumping effectively, thus not getting enough oxygen to his lungs. They wanted to admit him, but ultimately gave him a week to get everything taken care of and to be back, prepared for hospitalization until he receives a heart. His status on UNOS hopefully will be upgraded from a 4 to a 2.
Ken and I had a great vacation in June of 2023 in Ocean City MD. Few minor adjustments to be made, but knowing what's coming down the road we are choosing to make as many memories as we can.
Ken has finished all of his pre eval testing, and has, as of today, officially been "listed" on the National Transplant Regisry.
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Sending much love and strength ❤️❤️
Daniella Gordon
Love you guys❤️
Michele Perkins
Praying for you all.
Jennifer Demaree
You and your family are in our prayers..
Suzanne Edwards Smerdon
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Kenneth Sims
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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