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Seeking resources (Please!)
Someone I know has POTS, backflow issues in 3 of her 4 valves, is missing her ventricular septum, and has a comorbid nervous sytem disease. As a single mother and despite her cardiologist's pleas, she is unable to go on disability as it simply isn't enough money for her to support herself and her daughter. She is working herself into the ground with 3 jobs and is still months behind on rent, let alone is unable to afford medication, her needed surgeries, or any other interventions. Can anyone connect me with some good resources that may be able to help her out? Anything from counseling services, transportation, grants, charity organizations, medication fee assistance programs, etc, would be great. She could really use all the help she can get, especially during COVIS. Thanks!
AHAASAKatie, September 17, 2020 8:20am EST
We do have quite a few resources to share.
The Patient Advocate Foundation (PAF) at www.patientadvocate.org The PAF is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer, and/or creditors to resolve insurance, job retention, and/or debt crisis matters relative to their diagnosis through case managers, doctors, and attorneys. PAF seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment, and preservation of their financial stability.
Another option is to contact the Patient Advocacy Network (PAN) at www.panfoundation.org for assistance.
We have medicine assistance program information on our primary website, heart.org.
United Way’s 211 program is a free, confidential referral and information helpline and website that connects people of all ages and from all communities to the essential health and human services they need, 24 hours a day, seven days a week. You can get more information at www.211.org
Please let me know if any of these resources are helpful.
TomBroussard, September 22, 2020 10:29am EST
Hi Seeking Resources,
I am always at a loss for resources that I need so I ALWAYS go to the AHA website for the start of the resouces I need...Thanks to Katie at AHA for the great info she provided. Take care! Tom B.
AmbassadorB, September 22, 2020 8:26pm EST
Tom Broussard and Katie have offered an excellent place to start. PAF should also be a key source of additional helpful information. Most communities have a Chamber of Commerce, or other public non-profit organization (United Way) that might provide counseling and support for your friend with POTS. She shouldn't have to fight her battle without local support and understanding. You're undoubtedly involved and don't hesitate to keep this support network informed. Be bold and keep up the fight!
Ambassador B Bernie
AmbassadorC, September 24, 2020 7:58am EST
Welcome to the support network. My fellow ambassadors and Katie have provided some excellent insights and resources that I would encourage you to share with your friend. From my experience, post surgically, I learned that some hospitals also have patient advocacy groups that Often provide support locally. You may want to see if the hospital that her cardiologist is affiliated with, has such a group. It would be a matter of calling the hospital, getting to the cardiac unit and asking for a lead nurse or surgical liaison.
As Ambassfor B stated, please keep in touch and let us know if we can be of further assistance. Keep on fighting with heart. ❤️