Life at a vent camp: How Our Medical System Is Killing Tara Hegger
Imagine waking up to the shock that you have lost the ability to move your body. Your arms, legs and hands are no longer of use. You now have a hole in your neck with a tube attached to a machine that is doing your breathing for you. You are lying in the Intensive Care Unit at the hospital where you had surgery to remove a spinal tumor. You cannot speak because your tracheotomy tube is not adjusted to allow it. Those around you cannot read your lips due to facial paralysis from another tumor. You can only communicate by blinking your eyes.
You can't press the help button, you can't yell out for someone, you can't do anything for yourself. You feel very vulnerable and scared. Your body is not working like it once did, but your mind is clear. You are able to remember everything in your life and you desperately want it back. You want to share your feelings with anyone and everyone who is willing to listen. Nurses, aides, respiratory therapists, speech therapists, surgeons and doctors are buzzing around your bed. Your care team is so busy trying to manage the catastrophe your body has become that they lose the ability to deal with the neediness of your mind. The life that you once had is no longer a life that you will ever experience again. Your spirit is broken, and your soul hurts.
Eventually, your time in Intensive Care comes to an end. There is no longer anything your surgeons are willing to do for you. You are pronounced "stable", and you are moved to a 'long term' acute care hospital. Long term care, you soon find out, only has a 90 day maximum stay. This is what your insurance is willing to pay for. Your surgeons soon become strangers as they are not affiliated with the long term care hospital that you've been sent to. You are assigned a new care team who you have never seen before in place of your surgeons and doctors, who once knew your problems well. They are now the center of your universe. They know nothing about you when you arrive. They don't see the vibrant woman you once were, only the badly damaged package you have become. You are evaluated for therapy to see if ventilator weaning is a possibility. Depending on how your body will respond to therapy, you may have a good chance or none. All you want is a chance. A chance to regain strength. A chance to regain the dignity and pride you once had in your life.
This is what is happening to Tara Hegger, a 32 year old St. Louisan suffering from Von-Hippel Lindau (VHL) disease. She was a kindergarten teacher before her VHL tumors became unbearably painful and debilitating, resulting in a high number of surgeries. She has lived in St. Louis, Missouri her entire life. The last two years have been an absolute nightmare for Tara.
When the long term care hospital could no longer keep Tara due to the limitations on her disability based Medicare/Medicaid insurance, she was assigned a caseworker whose job it was to find a nursing home for her. Tara soon discovered that Missouri does not have a nursing home facility capable of taking care of a quadriplegic using a tracheotomy tube and ventilator. She was told that she would have to move to another state. Another state?!
If Tara were wealthy, she would have more options. But she is not, so she must accept what she is offered. She is grateful for having any insurance, but it is not designed to take care of all of her special needs. The majority of skilled care and nursing home facilities in the United States have rejected Tara simply because she is on a tracheotomy tube and ventilator. Some of the better qualified skilled cared facilities and nursing homes that would have accepted a patient in Tara's condition have now rejected her because of the exposed hardware and wound that is on the back of her neck from her past surgeries. Pins that hold her spine together keep sticking through her skin causing infection. We've found that many facilities will not take on the responsibility of treating an open wound. Other facilities rejected Tara because Medicare and Medicaid is not set up to cover the extra expenses of a quadriplegic on a tracheotomy tube and ventilator.
This whittles the choices down to nursing homes with one star ratings — ones that are woefully understaffed, unsanitary and uncaring. They are in another state, away from your family and friends. The facility promises the moon to get you to go there. They promise that they will make attempts to wean you from your ventilator, provide you with physical therapy and a specialized wheelchair. Tara was in one of those types of nursing homes for seven months. None of the promises they made came true, only to find that they were neglecting and dehumanizing Tara each and every day. She is currently residing at Mercy Hospital in St. Louis, where she is faced with a decision to return to the facility who have neglected her needs, or move further away from her home in an attempt to find "care" at a nursing home facility with one-star ratings. Tara is threatened with eviction from the hospital should she not make a decision soon.
This is unacceptable. This is not how a vulnerable and damaged human being should be treated. Our medical system and health insurance systems needs to be drastically improved. Somehow, the human element has been lost in healthcare. Can you imagine being in Tara's shoes? Her mind tells her that she is still a valuable asset to her community. She's full of life and ready to go to a facility that is willing to rehabilitate her. She's hopeful that she is going to be able to breathe on her own some day. Hope drives her will to live. All Tara wants is a chance. Tara's story must be heard.
A MESSAGE FROM TARA
Tara requested that we share her message to better understand how our medical system has been detrimental to her well-being and continued medical care.
TARA IN THE MEDIA
Below are excepts from interviews that aired on KSDK News Channel 5, St. Louis Public Radio (NPR) and KTRS 550 AM.
KSDK News Channel 5 - October 2016
St. Louis Public Radio (NPR) - October 2016
KTRS Big 500 AM - June 2015
Moments of Tara Hegger's life with family and friends before her life was changed indefinitely from Von-Hippel Lindau disease.
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