Keep Moving Forward on Affordable Care Act: My Daughter’s Story
Posted March 22nd, 2011 by Lisa DoyleA few years ago my daughter Julie was diagnosed with an illness called Dysautonomia and Postural Orthostatic Tachycardia (POTS). Julie had numerous hospital visits requiring many tests and procedures. The costs were astronomical. Julie continued to be covered under my insurance through my employer who provided a great plan. Julie’s insurance was to soon come to an end because of her age but her illness was getting worse and Julie’s health deteriorated severely at the end of 2010. Julie was blacking out daily and unable to continue work or school. There were days when she only had the energy to crawl to the bathroom. Julie had a heart monitor installed as her doctors believed there was a possible underlying heart condition.
said, “Mom, they’re pink!” It had been a long time since blood had reached her extremities. Holding her warm hand after surgery, warmed my heart. As I stared at the heart monitor now pulsing with a regularity I hadn’t seen all week, I swear I could see the changes in her face as the blood seemed to be bringing the needed oxygen to her every part of her body. Julie’s heart is now beating more regularly and helped daily by her pacemaker. She is not completely healed. The coming months will show how many of the symptoms of Dysautonomia remain. Since the pacemaker though she has not blacked out which previously was an almost daily occurrence rendering her unable to do almost anything most days.P.S. I want to add: I find so many people that I talk to aren’t aware of their options and don’t know where to go. Here’s a terrific resource to help you get started if you’re in this position: http://www.gettingcovered.org/toolkit/#
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March 23, 2011 at 2:37 pm by Doug and Barb OBrienBarb and I (Doug) have a wonderful daughter, Kristin. She is one of 3 adopted children along with one born to us after the adoptions were complete. Kris was our champion in every way and had such a great start on life. That is until she developed the symptoms of Huntington’s Disease. Over about 4 years the HD began to pull her apart. Her mental functioning was slowly destroyed, along with her job skills, her marriage, her driving, and her social skills. When Huntington’s Disease was confirmed in her brain we have been her caregivers and trying to help bridge all her needs so that they don’t bankrupt us. We have been fortunate because of all the wonderful help, care, and attention she is receiving from Dr. Nance’s HD Team of Excellence at the Henn. Cty. Medical Centr. We have been lucky that even though Kris is slowly but surely slipping to the end stages of HD, she and we have so many caring friends and very able medical assistance. She had to spend down nearly all of her assets including home and auto, but she is receiving SSi assistance and with the friends she has, even though she cannot speak clearly, cannot work, and cannot drive, she is still a loving, caring, kind person which is transmitted to everyone even with such a bad speech problem in this stage. We pray that all persons who have children like Kris can receive such caring, medical treatment and valuing from others no matter how severe her disease becomes. Please support Health Care for Kids. Thank you.
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Anita Reply:
March 23rd, 2011 at 4:33 pm
Thank you so much for sharing your story here, and for all the good work you’re doing for your daughter as well as speaking up for all who need health care.
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