Healthcare Whisperer

I am continuing my audio blog, moving away from my experiences with my journey with my mother to patient and healthcare stories.  It is my hope that these stories will be informative and instructive.  When you hear them, you may think, is she making this up.  No, they are real.

This show is two healthcare professionals talking about their expreinces of death and dying both professionally and personally.  Mary Elizabeth Parker,  PT,PhD, NCS, PCS, medical liaison for U.R. Our Hope, has dedicated her life to those with undiagnosed and rare illness. In her work, she has been a witness to the death and dying of children and been a compassionate comfort to their loved ones.  Her courage and committment to these families is truely inspirational.  She will share her experiences and insights about these intimate moments of the dying journey with families. With all our combined experience with death and dying, nothing prepared either of us for the loss of our mother.  We will also discuss  how our professional work with death and dying was little help at such a personal loss.  We will talk about how it changed us and enhanced our ability to understand how death and dying impacts those left behind. Don't miss this show!

Surviving death is about the days after all the details are done, memorials and estate issues, and the grief begins to take hold.  I am going to talk about what it is like to suddenly find yourself alone with your loss, the emptiness and the sadness.  A conversation as difficult in our society as dying.  How I learned and witnessed my own rawness and vulnerability.  A journey to understand how one survives the death of a loved one.

This is the continuing story of my mother's passing.  In this episode I will talk about what happens after the death, the details like dealing with planning two memorials, social security, finances, wills and final bills.  I don't think a person is prepared for what has to be dealt with.  I want to provide some insight as to what it is like during this time, staying focused and getting the job done when you are feeling sad and vulnerable.

This episode is about my experience of  my mother's final days.  How hospice care was critical, how the assisted living staff dealt with the process and the details after death.  It is a time of joy and sadness, grief and celebration.  It will be about the impact of the year of care giving and the road to recovery when all is said and done.  The information, I hope will help others deal with the process of caring for a loved one at the end of life.

This episode continues the journey of dealing with my mother's dying and the facility indifference.  I will be talking about my insights into being a caregiver.  I know many others have had similar experiences, the loneliness one can feel and how family and friend support make the difference.

This is a continuation of my journey with my Mother.  This episode I will talk about what has happened lately and the constant worry one has as a caregiver.  I never know when the next problem will arise or what it may entail. 

The endless drama continues.  I have learned to never let my guard down and expect the unexpected.  I am going to talk about DNR and specialized Physician signed specific orders on what you want at the end of life.  A DNR may not be enough and even then, nobody may read it.

The world of assisted living and hospice is not easy.  Walking the road with my mother as she is dying is painful and inspiring.  Some days I feel very lucky to have this time and other times my head is spinning. 

Just as Meghan Trainor says in her song"It's all about the bass", I say with assisted living and hospice, "it's all about the regs".  I have kept my mother safe by knowing what her rights are and what the regulations are.  This blog will be about how I faired knowing certain regulations.

What a crazy ride this journey is.  Minefields galore.  My mother continues to decline and I can hardly keep up.  This blog is about working with hospice and getting the assisted living to respond.  Lessons learned that I hope will help you

I continue talks about caring for my Mom in assisted living and hospice.  My hope is my experience will help others.  I have just returned to New Mexico and witnessing the changes that have occurred in the last two weeks

This is the continuation of the journey through assisted living and hospice.  My goal is that by listening, you will gain insight into the process.  This blog speaks to some key factors  caregivers needs to think about when selecting an assisted living and hospice, what to do when things don't seem to be going your way and keeping your loved one safe.

Here is another installment about life with Mom in assisted living and hospice.  There bever seems to be a dull moment.  She continues to decline and I continue to try to keep her comfortable and safe.

This is a continuation of my experiences dealing with assisted living and hospice.  It is my experience of dealing with with all the issues and the constant rebalancing.  My hope is the information from my experience will be of help to others.  This blog will be about hopsice and talking to my Mom about dying

My blog continues about what it is like to be the caregiver for a parent in assisted living, nursing home and hospice.  In this episode, I will speak about Hopsice and my Mother's choices about her death.  I will talk about the prospect of her death and how the Hopsice services have helped.

This is day three of my blog and the saga continues with the facility, hopsice and care manager.  What  a life being a caregiver!  I hope to offer some tips on the best way to get what is needed for a loved one in this situation.  Even though I have advocated for clients in similar situations, it doesn't make it easy.  I think I am just faster at knowing what the problem is and the possible solution.

This is the second audio blog post about my journey with Mom, her dying and dealing with the Assisted Living/Nursing Home staff.  Today, I will talk about the Ombudsman program and how it can help solve problemsand deal with issues in the residents favor.

This blog is in addition to my radio show.  It is my journey with my Mother since she had he stoke one yeear ago.  It is about my experience dealing with the world of geriatric care, assisted living, nursing home, hospice and my mother's personal care aides.  I hope it will provide insight and valuable information that can help someone else on this journey

  This show is the amazing story of Jade Grace, who grew up with a mother who lived in an iron lung.  The iron lung was a tank respirator used to help people artificially breathe used often during the polio epedemic.  It's use was usually only for several weeks until the lungs regained strength.  For some like Jade's mother, it was for a lifetime.  She lived 30 years on the iron lung.  Jade's story is about a child's experience of interacting and loving a mother who was lived in an iron lung.  Many on iron lungs were confined to institutions but Jade's father had the resources to keep her at home with all the necessary care.  She even summered on Catalina Island with the family.  Jade's story is a part of medical history that everyone should hear about.  Her stories are capitvating and heartwarming. Be sure to tune.    

Welcome back to the Healthcare Whisperer Show!  With our move from Boston to Seattle we have not been broadcasting.  But I am back!  I feel very lucky to be restarting my show with the amazing story of two sisters, Dr Sandra Haber and Sat Nirmal Kaur Khalsa.  Dr Haber is a Phd psychologist who after 9/11 selflessly dedicated her time to provide care for families, workers and all impacted by this horrific event.  In 2002, after working at the 9/11 sites, she was diagnosed with polycythemia, which in 2012 morphed into myelofibrosis.  Although, there is no exact research data that the elemental exposure at the 9/11 sites was the cause, and the medical community cannot definitively confirm the exposure as the cause, it is believed to be strong reason as to her illness. After years of watching, waiting and continuous testing, her only option for this illness was a bone marrow transplant.  Her sister, Sat Nirmal Kaur was a perfect match and never hesitated to agree to the procedure.   Tune it hear about both their journeys, what it is like to be a donor and a recipient.  But most of all, listen in hear this beautiful story of sibling love and support.  This is one show you don't want to miss! Dr Haber can be reached at www.drhaber.com or facebook.com/drsandrahaber

Healthcare Whisperer welcomes back Mary Elizabeth Parker to the show.  She is here to discuss her recent trip to Washington, DC to be a part of Rare Disease Week.  She was involved in many events including meeting with several congress people.  She will be discussing upcoming legislation, research and what is happening at the NIH Rare Disease Department. Mary Elizabeth is dedicated through her work with U R Our Hope, to helping families and individuals finds answers to undiagnosed problems.  She is also a voice for those who are suffering with rare diseases and need assistance getting what they need from the healthcare system.  She is an inspiration for many including me! Be sure to tune in to get the latest updates and hear the moving and inspiring stories of those Mary Elizabeth works with.  

This show is an opportunity for listeners to call in and ask question about Obamacare.  Are you one of those millions of people who have been trying to get buy insurance through the exchange?  Feeling frustrated?  Or are you just afraid of the new health law and are confused about what it means to you.  This show is for you.   Mary Elizabeth Parker and I are going to talk about Obamacare.  She is being asked by many of her patients what it all means.  This is going to be a forum to talk about what it does mean to all of us. Let's hear your story!  

I am happy to announce that Pat Rullo is returning to the show to discuss patient safety issues.  Pat is the author of Speak Up and Stay Alive an amazing  book and manual on staying alive and being safe in the hospital.  Her book is the story of her journey while caring for her mother in the hospital.  She learned very quickly that even with the best doctors and nurses, patients could still be a risk for falls, infections and misdiagnosis.   Pat is now an expert in all things patient safety related.  She has dedicated her life to getting the information to everyone.  Beside her book, and many lectures, she is host of the Patient Safety Radio Show, a weekly show heard live in Phoenix and Cleveland areas.  Recorded episodes can be downloaded at www.patientsafetyradio.com Pat is relentless in pursuing areas of safety that many people aren't aware of.  Today's show will include not just her story but a look at the issues of increased exposure to radiation from CTs,Xrays and cell phones.  I know if Pat is concerned, so should I.  Listen in folks.  This is one show you will want to take notes!

Have  you ever been denied coverage by your health insurance?  It is one of the most frustrating moments especially when you know the care should be covered.  This is when the battle with the insurance company begins to get a reversal of the denial.  It is an uphill battle because at the onset it seems as if they hold all the cards. My guests Debbie and Lou Pappas fought the battle and won.  Their story is about the courage and determination to face all odds and come out on top.  Their insurance company, Humana decided the care Lou received was to be considered a pre-existing condition.  They were not going to pay the over $150,000 charges. Debbie and Lou lived in fear of having to file medical bankruptcy as the appeals process dragged on for months.  This is the story of a battle well fought and the sweet taste of victory when the reversal occurred. Learn what they did to get the job done and what you need to do if you find yourself in a similar situation.  This is one show you can't miss.

Healthcare Whisperer welcomes a mother, Diane Roof and daughter, Jen Hashisaki caregiver team to the show to discuss their journey into the world of hospice.   This story began when Diane's mother fell, was hospitalized and went to rehab.  Neither Diane or Jen, ever thought the fall would bring them face to face with the need for hospice services.  It was a journey filled with much anguish and misinformation.  During this time, they needed to learn how to navigate the healthcare system to ensure their loved one was getting the best care.   Tune in to find out how these amazing care giving team fought for the best possible care, learned how to ask the right questions and insisted on having hospice involved.  This is one show you won't want to miss.  

Imagine one day you wake up and you can't hear.  The medical community is stumped except to say maybe it was the cold you had.  You hope it will resolve itself and your hearing will return.  But that does not happen and there is permanent damage to your hearing. What would you do? Healthcare Whisperer welcomes Monique Hammond to the show. Her recently published book, What Did You Say? An Unexpected Journey into the World of Hearing Loss , is the compelling true story of sudden hearing loss.  In her book, she describes the initial episode, her interaction with the specialists and learning what the world of hearing loss is all about.   Nothing prepares you for the world of hearing loss, the terms, the tests or the long term prognosis.  Her book helps to guide the lay person through the maze of the hearing loss world.  Monique is a registered hospital pharmacist.  She lives in Minnesota and was appointed by the Governor to The Commission Serving Deaf, Deafblind and Hard -of-Hearing. She has also served as president of the Hearing Loss Association of America. Tune in for an exciting and informational show.

This show is going to focus on how to find and hire a patient advocate when you find yourself engulfed in the complex healthcare system.  Once the realization occurs the system is getting overwhelming and the stressful, how do you find someone to help you? Anne Llewellyn,RN-BC, MS, BHSA, CCM, CRRN, editor-in-chief of Dorland Health will be the quest.  Anne brings over 35 years of expertise as a registered nurse,  patient advocate and educator. She will share practical information that individual can use to understand the role and value hiring a patient advocate can bring to those who find themselves engulfed in today's complex healthcare system.    This is going to be an informative and exciting show.  Listen in to learn the Ins and Outs of choosing a patient advocate that fits your needs.

In past shows, I have had guests who related their heartbreak and struggle to find a diagnosis for a child or loved one.  The journey is perilous, arduous and all consuming.  For some, it can take years while others watch their loved one decline with no treatment or cure insight. This show will feature families who searched and fought the healthcare system and were able to get answers.  Then comes the work of treatment and long term care.   I am looking forward to the insight of these families and how they were able to successfully navigate the healthcare.  There stories will inspire all of us.

Healthcare Whisperer welcomes Gail Gazelle, MD, an Associate Professor at Harvard Medical School, to the show.  Dr Gazelle will be talking about her journey as hospice doctor, her evolution to patient advocate and finally her commitment to helping doctors with burnout through coaching. As a physician, she has a deep understanding of the stress, demands and pressures doctors are under. She compassionately coaches doctors by providing  support and tools to overcome burnout.  She is the advocate and champion needed for a successful outcome.  Her goal is physician wellness and wellbeing.  That goal not just her clients but all of us. Dr Gazelle has amazing insight into the nuances of the healthcare system and how to overcome barriers.  She has appeared on CNN,CBS, NPR; quoted in O magazine, USA Today, The Washington Post, and many more.  Her website is www.gailgazelle.com This will be a show you won't want to miss.  Tune in to learn more about what causes burnout and the work Dr Gazelle is doing to help.

For most of us, when we go to the doctor with symptoms, we are diagnosed and treated.  Imagine going to the doctor and being told there were no answers as to why the symptoms were occurring.  Then imagine, this is your child and all the specialists referred to have no answers.  What if you were told this was a rare illness and no one knew how to diagnosis it?  What would you do? This is the story Heather Long is going to talk about on this week's show.  One of Heather Long’s three children (Cal) passed away in 2006 at five years old to an undiagnosed disease. Heather was told that her son’s death was likely caused by a very rare metabolic disease, and she has since focused her energies on being an advocate for patients suffering from undiagnosed and rare diseases.   In 2008, Heather co-founded a nonprofit organization, U.R. Our Hope., that assists individuals and families who are on the journey of finding a diagnosis or are navigating through the health care system after a rare diagnosis. In 2011, Heather co-authored H.R. 2671- The CAL Undiagnosed Diseases Research and Collaboration Network Act, which was proposed in the 112th Congress and is scheduled to be re-introduced during the current 113th session. And recently, Heather proudly joined the Global Genes Advocacy Leadership Group.

The horrific bombings at the finish line of the Boston Marathon has had a profound impact on all of us whether we were there or watching on TV.  The images are forever part of our lives now.   Events  of this magnitude have the potential to cause Post Traumatic Stress (PTSD).  What is happening is, the brain is having great difficulty filtering and understanding the information.  It is trying to process the experience or visuals.  The result is can cause stress with symptoms ranging from anxiety, disrupted sleeping patterns, anger, sadness, fear and loss of appetite. It is often thought that PTSD occurs only to those who experience a severe trauma like war.  But this is not the case.   An event like the bombings can traumatize and cause PTSD to those who only see it on TV. Healthcare Whisperer welcomes back Michele Rosenthal,  an expert on PTSD to talk about PTSD. She has personally experienced and overcome PTSD.  She has dedicated her life to helping others to understand PTSD and find the appropriate care.  Her website www.healmyPTSD.com offers a wealth of information on PTSD and resources.  Her book, Before the World Intruder: Conquering the Past and Creating the Future  is an award nominated book. Michele will be offering assistance and resources for those experiencing PTSD after the horrible Boston events.  Listen and call in with questions    

Healthcare Whisperer welcomes Reverend Glenn Mortimer to the show to discuss his work as a healthcare advocate for his parishioners and caregiver for his mother.  Both roles have taught him about the perils of the healthcare system and how to overcome barriers. His work as a minister, takes him to many hospitals, rehabs and nursing homes in the Greater Boston area.  He has witnessed first hand the need for families to have someone who will speak for them during a medical crisis.   He is also the primary caregiver for his chronically ill mother.  His work with his parishioners has given been a blessing in helping get the right care for his mother. He is not afraid to speak his mind and advocate for his parishioners needs to doctors, nurses and administrators.  His stories are both funny and poignant.  Don't miss this show.

Healthcare Whisperer welcomes Trisha Torrey to the show to discuss why having a patient advocate on your team is an essential ingredient when navigating the healthcare system.    Trisha Torrey is Every Patient’s Advocate, a name she gave herself after a heinous misdiagnosis in 2004 which prompted her career change to patient empowerment and advocacy.   Today she is About.com’s patient empowerment guide.  She speaks across the country to both patients and providers, and she has written three books. Her first, written for patients, is called You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve). She has also written two business books for independent patient advocates.    In 2009, she founded AdvoConnection.com, an organization that helps patients and caregivers find a private, professional patient advocate to help them navigate the healthcare system.  It is supported by the professional organization Trisha started, The Alliance of Professional Health Advocates, which provides business support to help private health advocates start and grow their practices.   Trisha has appeared on, or been quoted by CNN, NPR,MSNBC, USA Today, the Wall Street Journal, O Magazine, Redbook, Health Magazine, Fox News, and other media.   She can be found at http://www.advoconnection.com                      http://www.APHAAdvocates.org  http://www.everypatientsadvocate.com Be sure to listen in to get valuable information on patient advocacy and why you may need one!

Healthcare Whisperer welcomes Michele Rosenthal to show to discuss her experience of surviving multiple misdiagnosis of a rare illness (1:.0000005) and what it takes to overcome the shock of medical trauma and its aftermath.  She has committed her life to sharing her knowledge and experience from her journey to health. As a keynote speaker, award-winning blogger, author, workshop/seminar leader, certified professional coach and mental health advocate, Michele works privately as a post-trauma coach specializing in posttraumatic stress disorder (PTSD). The host of Your Life After Trauma on Contact Talk Radio, she is also the founder of HealMyPTSD.com, a popular website for information, education and support for PTSD. Her trauma/PTSD recovery book, Before The WorldIntruded, was recently announced as a finalist for the Books For A Better Life award. She sits on the Advisory board for HopeForPTSDvets.org and is the Program Director for Wellness Services for the Warriors Pathfinder Program. If you have a family member friend or colleague suffering from a medical trauma, be sure to listen to this show.  You will certainly gain a clear insight into the issues, available resources and support services.

Ida Schnipper is the guest this week to talk about her journey with breast cancer.  She has recently finished treatment and wishes to share the experience.  She will provide helpful tips to help understand the process and treatments.  Ida is  an award-winning nurse and health care executive with over 20 years of experience. In addition to her oncology nursing experience at Memorial Sloan Kettering Cancer Hospital in New York, Ida led the development and execution of a member-centered health care program at ConnectiCare, a leading managed care Fortune 500 organization in Connecticut. With all her knowledge and experience with the healthcare system, she was still barely prepared for what she had to faced during her treatment.  Be sure to listen to find out what Ida learned and how this knowledge can help you, a friend or a loved one.

I thought it would be good to continue our discussion on dementia.  This show, Howard Block will be here to discuss his work as an Alzheimer's  consultant and care manager to families.  He has worked extensively for the last  20 years in the field of dementia.   Howard approaches his work with dedication, committment and honesty.  He has helped many families through difficult times with kindness, compassion and humor. I met Howard through a mutual client and I am very grateful.  He is an inspiration in his unique way in which he works with Alzheimer's patients. Be sure to listen because Howard will not disappoint you with his  depth of exprience and helpful hints.    

This show will continue the discussion on patient safety.  Helena Doyle joins me to discuss how she has kept her mother safe during multiple hospital visits.  Through these experiences, she has learned how to navigate the complex hospital systems and keep her mother safe.  She has become an amazing empowered caregiver.  Her story and lessons will inspire you.  Don't miss this continuing conversation of patient safety.

Healthcare Whisperer welcomes Karen Curtiss founder of CamapignZERO - Families for Patient Safety.  The organization's mission is to provide people with information and checklists on how to stay safe in the hospital. Her Journey to help others is rooted in personal experience, the loss of her father from a series of Never Events, to her husband who almost died from a hospital acquired infection and her son who was misdiagnosed with appendicitis.  She had to become a vocal advocate in order to keep her family as safe as possible. She has committed to helping other families from having the same experience.  She is the author of Safe and Sound in the Hospital:Must have Checklists and Tools for your Loved One's Care.  No one should enter the hospital without these checklists. When I first heard Karen speak, I was moved by her story and her amazing work in the field of patient safety.  You don't want to miss this show!

Tracy Cloninger was a healthy, wife, mother of two, exceptional athlete and teacher when she was diagnosed with thyroid cancer.  She never thought her life would be turned so upside down not just by the cancer, but the healthcare system.  Her story is one of struggle to get the medical community to first, give her the care she desperately needed and second, to listen when she said she wasn't better.  Her life was falling apart.  But Tracy is a resilient and determined woman who just wouldn't believe the medical professionals, when they said she would have to learn to live with fatigue and depression.  She looked deep inside herself and courageously took steps to find the resources for her healing.  Her struggle has led her to a new life's work to help others overcome obstacles to health and healing.  Listen in to her amazing story that was written about in the July 2010 O Magazine.

 Finding the right healthcare team can be a challenge for patients and caregivers.  Ken Farbstein, patient safety advocate, founder of Patient Advocare and author of Getting Your Best Health care: Real-World Stories for Patient Empowerment, will be discussing the best ways to find a care team.  Through caregiver stories and experience, Ken will be providing ways to partner with doctors and nurses, staying safe during  a medical crisis and the general mindset for being an empowered patient.  Ken is passionate about patient safety and started http://www.patientsafetyblog.com , a blog for patient safety stories.  He has worked with hospitals in the Boston area to improve patient safety and decrease medication errors.  He has worked to educate local state representatives on patient safety issues resulting in the enactment of essential laws governing patient safety.  Be sure to listen in.  This show is guaranteed to be informative, uplifting and insightful!

Our guest for this show is Michele Rosenthal, a PTSD survivor and founder of  the website, www.healmyptsd.com.  Her site with over 8,500 visitors a month, is an amazing resource for survivors, caregivers and healing professionals.  She will be discussing her personal journey and healing with PTSD.  She will be offering advise on engaging in your care, organizing your thoughts for care and overcoming the obstacles in the healthcare system.  She can also be heard on her radio show "Your Life After Trauma", Thursday, 7-8PM EST on Seaview Radio or live stream,  http://www.healmyptsd.com/your-life-after-trauma2 Mark this date on your calendar because you won't want to miss this show.     

This week our special guest is Alba Frasco who is currently receiving treatments for breast cancer.  She became an empowered patient when she was misdiagnosed and had to fight the system to get someone to listen to her.  She has great insight into what questions to ask medical professionals, how to trust your instinct and getting a second opinion.  Her determination, courage and humor are amazing and inspiring.   Be sure to listen in and hear her journey through  the cancer world.

The Empowered Patient welcomes Siri Bani Ludlam to the show to discuss how she successfully navigates her mother's nursing home and gets what she needs. Her favorite tip is "Don't take NO for an answer". And that is exactly what she has done to make sure the nursing home is providing the care required. She will also speak to the emotional impact on her and some of the techniques she uses to get through the worst of times. Please tune in and get some valuable information on the world of nursing homes.