SORT BY Relevancy
Mike and Joyce speak with Dr. Julia Hallisy about The Empowered Patient Coalition: providing healthcare improvement and patient safety tools directly to consumers.
About Dr. Hallisy:
Dr. Julia Hallisy obtained her BS in Biological Science from the University of San Francisco in 1984 and a second Bachelor’s degree from the University of California in Dental Sciences. In 1988, Dr. Hallisy received her Doctorate in Dental Surgery from the University of California at San Francisco School of Dentistry. Since that time, she has been a full-time practicing San Francisco dentist.
Her second child, Katherine Eileen, was diagnosed at five months of age with bilateral retinoblastoma. Dealing with her daughter’s life-threatening diagnosis, the many recurrences of cancer, and the subsequent treatments for the malignant and aggressive tumors marked the beginning an almost 20-year involvement in our healthcare system. The unique combination of her scientific training, her work as a healthcare provider, and guiding a child through a chronic illness has afforded her invaluable insight as an advocate for patients.
Dr. Hallisy began to research the topic of patient safety in 1998. She has lobbied for health care reform in Washington, DC with Consumer’s Union.
Dr. Hallisy is committed to and passionate about the subjects of patient safety, health care reform and medical error reduction. She is the founder and president of The Empowered Patient Coalition.
Dr. Hallisy was born and raised in San Francisco, where she lives with her husband, John Hallisy, and their two sons, Daniel and Kevin. The Hallisy’s ten-year old daughter, Kate, lost her life-long battle with cancer in February 2000.
A discussion with the Wife of patient that after complaining of his level of care and the workers in the clinic, he was terminated for what appears to be trumped up reasons. He has since been blackballed from other clinics in his area; with no clinic to go to he has been forced into HOSPICE.
This appears to be an ongoing problem with DCI, Fresenius and Davita. This patient was a Davita patient. Dialysis Advocates went to their Legal Department and Javier Rodriguez the CEO of Davita. It appears that no one cares at the CEO level; we’ve asked him and the Legal Department to help with this patient. Nothing came from our request to CMS to help this patient who had no appeal and is not allowed to face his accuser.
This is happening much too often in too many clinics where complaining about care or workers leads to retaliation. What if any investigation is done at the clinic level is often poorly done and biased in favor of the worker or clinic. Patients are not allowed to see the results of an investigation nor are they allowed to face their accuser. A patient it appears has to go to legal to clean up a record they are not allowed to see.
We are having too many patients with the same situation Nationwide. One even having to strip down naked before getting dialysis.
Call in and ask questions and our website has other cases in the News Portion. www.dialysisadvocates.com
Dr. Nancy Finn has written a sequel to her book, ePatients Live Longer. Joyce and Mike speak with her about the new edition, and what she has learned since the writing of her earlier book. How does it help a patient to do some research, get engaged, and advocate for him or herself?
See Nancy's website at http://healthcarebasicsinfo.com/
Joyce talks with Eve (not her real name) about her experience as a caregiver through her husband’s chronic illness and death. She then talks with Dr. Sheryle Baker about Eve’s experience, and about the changes that occur in the dynamics between the patient and the caregiver, and how we can all help the caregiver survive. This is a one hour show.
About Our Guests
Eve (not her real name) is the widow of a man who had von Hippel-Lindau disease, and a series of brain and kidney tumors that led him to a course of dialysis and eventually to his death. Eve graciously shares the pain of her experience so that we can learn from her experience.
Sheryle Baker, M.A., LMHC., is Executive Director of Life Center of Tampa, Florida, a non-profit agency that provides counseling for victims of violent crime, and people who have lost loved ones, through chronic illness or sudden death. She a psychotherapist specializing in bereavement and traumatic loss and incident.
About Caregiver Stress
It is important to manage caregiver stress while you are going through the experience. If the patient is willing to negotiate the changes in roles and responsibilities that occur, that can help. Others around the caregiver can provide important support and outlets for stress.
For both the patient and the caregiver, there are a series of losses, culminating in the death of the loved one. Each of these losses must be grieved, and the grief worked through, or the stress turns outward (as anger) or inward (as bitterness and even illness).
Often when we are in a traumatic incident we muddle on through and seem to be doing fine. After the peak of the stress has passed, however, we crash. This “post-traumatic stress” can be devastating, and requires work to get through it.
Shelley Bowen is the Director of Family Services and Awareness for the Barth Syndrome Foundation (BSF).
BSF works to increase awareness on a global level among the medical community, academic community, the medical research community and the lay population about Barth Syndrome. There are better strategies today than ever before for living with Barth Syndrome. Nonetheless, it often shortens the lifespan of people, especially children.
Shelley speaks with Mike and Joyce about life with Barth Syndrome, and how families cope when life ends.
For more information about Barth Syndrome, see https://www.barthsyndrome.org
One of the most difficult struggles we face in life is learning to be patient. How many times have you become frustrated that God wasn't answering your prayers fast enough? How many times have you become anxious about family members who have stopped going to Church? If we look at salvation history, we'll see that the Lord operates according to His own schedule. As we prepare to enter into the Advent season (a time of hopeful waiting), join Gary Zimak as he offers suggestions for becoming more patient. In addition, Gary will share more information about his new Real Life Radio program which begins in 2015!
Mike and Joyce speak with Dana Dornsife, President and Founder of an organization called Lazarex that helps people identify and participate in clinical trials that may be appropriate for their condition.
Dana first became involved in cancer patient advocacy when her brother-in-law, Mike Miller, was diagnosed with pancreatic cancer in 2003. Mike had three children, the youngest of whom was only four years old.
Dana and her family searched for options for Mike that would buy the family some time and found a clinical trial treatment. Mike was treated successfully and lived long enough for his youngest daughter to have real memories of him.
Since then, Dana has fought tirelessly for improved options for cancer patients who have been told there is no hope left.
Lazarex Cancer Foundation was formed in 2006 to build a bridge to hope, dignity and life for cancer patients and their families. It provides financial assistance to defray the costs associated with patient participation in FDA clinical trials. Additionally, it helps patients navigate their clinical trial options and provide community education and outreach services.
- helps patients of all ages and walks of life, with all forms of cancer.
- helps patients take advantage of medical breakthroughs today, because they may not have a tomorrow.
- believes that the size of a patient's checkbook should not stand between them and the choices they make or the treatments they need.
- provides resources to fill the gap that exists between when a patient is told there is no more hope and when they are truly done with their journey in life.
For more information, see <a href="http://www.lazarex.org">http://www.lazarex.org</a>
Mary-Frances Garber is a genetic counselor who provides Supportive Genetic Counseling, complementing what is traditionally offered in medical centers. Supportive Genetic Counseling is for women and their partners who have experienced pregnancy loss, stillbirth, pregnancies affected with abnormalities, or for individuals or families with the recent diagnosis
of a genetic condition.
“My focus is on the emotional responses patients and their partners may have following various obstetrical and genetic complications. Each person is unique in the way they respond to these issues. It is my goal to listen to you, help you cope with your emotional response and facilitate healing and moving forward with your life.”
Mary-Frances Garber is a board certified, licensed genetic counselor who earned her B.S. in Molecular Genetics from the University of Rochester and her M.S. in Human Genetics from Sarah Lawrence College. Having worked for 11 years in a high-risk obstetrical setting in the Antenatal Diagnostic Center at Brigham and Women’s Hospital, she gained extensive counseling experience. She has worked with many families having various genetic, chromosomal or developmental conditions. She is now in private practice focusing on patients with concerns surrounding compromised pregnancy outcomes, a recent diagnosis of a birth defect or genetic condition, and those in the process of obtaining a diagnosis for their child.
Mike and Joyce speak with Mary-Frances about her work.
See her website at http://www.listeningreflectinghealing.com/
It's easy to push hard and want more. It's also easy to flame out, and crash and burn, or try to scale too big too fast when we first start out on a new goal. They key is knowing how to patiently push ourselves and our teams and stay on track to our success.
Listen in as JT gives you 5 ways to keep a strong and steady pace on your way to success. By the way, Step #4 is HUGE…
Fly High. Fly Fast. Fly Far!
Mike and Joyce chat about the adventure of going outside your comfort zone for medical care.
Joyce has been hosting a family from a village on the west coast of Ecuador who are in Boston to get life-saving heart surgery for their son. Not only have they traveled a great distance, but Boston has very different weather than the tropical weather of Ecuador, the food is entirely different, and they don't speak any English.
They also chat about some of the highlights of the shows of 2014, and foreshadow next week's Christmas week show about considering clinical trials, and the resources that are available to assist you in finding and joining clinical trials that might be helpful in your situation.
Many thanks for listening in 2014, we hope you enjoy next week's show, and that you will be with us in 2015, happy and in good health.
Be well, and be a Powerful Patient.
Join Host Live Chats
- Mark J Kohler (58 chatters)
- WGAG Radio (33 chatters)
- BonnieAlbersOnAir (13 chatters)
- Help4HD (8 chatters)
- High Frequency Radio Network (8 chatters)
- Pine Ridge Warriors (7 chatters)
- Variety Radio Online (7 chatters)
- Southern Sense Talk Radio (6 chatters)
- Morning Mayor (3 chatters)
- Ed Boston Podcast (2 chatters)
- George Gomond Radio (2 chatters)