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Hi, my name is Stacy, my husband Brian was diagnosed with cardiomyopathy in 2005 which ultimately moves into congestive heart failure. At that time the drs gave him 5 years without a heart transplant! He beat every odd that was put in his path. He continued to work full time until March 2012 at which time the drs indicated he was no longer able to safely work, especially in his field. The drs continued to call him a phenomenon because of everything and how long he was able to fight back against class III and then class IV heart failure. He is now in end stage heart failure. He is currently in Philadelphia at Hospital University Pennsylvania (HUP) and hoping he can complete all required tests to be approved to be re-listed back to the heart transplant list.
He was previously active on the list from 2013 - 2017 at which time he was moved to what was known as Status 7, still on the list but no longer qualified due to weight gain. At which time they identified issues with his thyroid in late 2018, an unfortunate side effect from all the medicine he was on. With yet more medication to try to fix what other medications messed up he lost over 100 pounds from early 2021 through mid 2022. Since he was back in the BMI range to qualify for the transplant list again he was in the process since June 2022 to do all of the tests to be re-listed. Tests were started during his July 2022 hospital admission, many tests were scheduled and re-scheduled due to another admission or Drs being sick etc. Brian ended up back in the hospital in end stage prior to his last test able to be completed. That pretty much sums up Brian’s journey to the current.
He will remain in the hospital until which time a heart is received (if he is able to be listed). If he is unable to be listed, due to the device they inserted, Impella, he will not be able to leave the hospital
I am working remotely while staying near the hospital at the Penn Medicine Transplant House, which is walking distance to the hospital. I am going back and forth to the hospital throughout the day plus going back after work and spend the evening with him.
In addition to starting the CaringBridge site,
I can’t believe I’m saying this but there has been a GoFundMe account also started. With the cost of me staying here as much as I can, yet traveling back and forth to maintain the house as well as making sure Bella is safe and well taken care of. In addition, to assisting with medical costs that are not covered or are applied to our maximum out of pocket, of $14,000 since the Philadelphia hospital is not part of our “enhanced” network.
GoFundMe link-
https://gofund.me/61d90246 #brianneedsaheart
Thanks for reading to the end of our story.
Love, The Werntz’s
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