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Interviews with survivors, victims' families, policy makers, and health care workers. What went wrong? How can we make health care safer? Host Scott Simpson, uses his counselling skills to evoke the secrets, stories and solutions. https://www.patreon.com/rss/MedicalErrorInterviews?auth=2eY8hVY9bd5o78a8cmpNSURYZ2VrqXrq
Episodes
Monday Jun 29, 2020
Monday Jun 29, 2020
When I first connected with Debbie Lambert about her experience with gadolinium toxicity, I had to google ‘gadolinium’. When I read that gadolinium is the substance they inject you when you get an ‘MRI with contrast’ and that it can cause toxicity, I immediately started to search my memory.
I can recall at least one occasion of getting an MRI with contrast -- I remember the warm sensation it caused in my body, and the technicians telling me to drink lots of water to flush the chemical out of my body.
After interviewing Debbie about her experiences living with the disabling chronic symptoms, and learning the facts about gadolinium toxicity, like the black box warning the FDA now requires, and the admission by the manufacturer that gadolinium accumulates in the body, I’m shocked that I’d never heard about this widespread problem. I guess that’s a testament to the medical industries ability to hide, ignore and deny medical errors.
As Debbie recounts, she was experiencing severe pain and it was determined it was emanating from her pancreas. Debbit was sent for a routine MRI with contrast to be able to get a better image of her troubled pancreas. The MRI technician did not ask for Debbie’s consent to be injected with gadolinium or inform Debbie about any potential harms from the invasive procedure. Debbie was hooked up to an IV and the gadolinium started to flow into her veins.
It was during Debbie’s 3rd MRI with contrast when things went horribly wrong and Debbie felt like she was being fried from the inside out. Debbie told the MRI technician immediately, but Debbie’s symptoms were dismissed and she was told to drink lots of water.
But water wasn’t going to cure the damage done to Debbie’s organs. Water wasn’t going to stop the pain. Water wasn’t going to stop her from being disabled.
Debbie does share what has helped - but not cured - her battle with gadolinium toxicity, and she shares about the community of survivors advocating and creating awareness about this problem so that others can make informed decisions about having the procedure.
If you’ve had an MRI with contrast, or are concerned about the potential harm from gadolinium toxicity, you’ll want to hear what Debbie has learned about the medical system, the legal system, and your body’s systems when they are exposed to this rare earth metal.
Connect with Debbie Lambert on twitter: @DebbieLambert
On Facebook - Living With Gadolinium: https://m.facebook.com/livingwithgadadmin/…
Info about MRIs and Gadolinium Toxicity:
Amazon e-book by Dr. Catriona Walsh: Contrasts: More Than Meets The MRI
Be a podcast patron
Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.
Premium Patrons get access to video versions of podcasts for $5 / month.
Be my Guest
I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
Need a Counsellor?
Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
**For my health and life balance, I limit my number of counseling clients.**
Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Monday Jun 22, 2020
Monday Jun 22, 2020
When you have a family member or loved one that needs medical care, and you do the research to find one the best doctors and one of the best hospitals to provide safe care, you expect that person will receive proper medical support.
What you don’t expect, is that they will kill your loved one.
But that’s what happened when college student Alex Smick injured his back when he fell off his skateboard and then was prescribed a succession of opioid painkillers.
As Alex’s mother, Tammy Smick shares, doctors were quick to hand out big pharma’s big profit opioid painkillers, causing Alex to have a dependence on them. As a grounded and responsible young man, Alex recognized what was happening and with his parent’s support, was proactive in seeking high quality, high priced, health care.
But as Tammy recounts, within hours of checking into the hospital, Alex was killed by health care.
The trauma from Alex’s unexpected death was deepened when Tammy found out the truth as to why her son died at the hands of doctors and nurses. The layers of trauma were further deepened when the doctor’s so-called punishment was secured through a closed door, backroom deal that left Alex’s family as powerless bystanders.
Tammy tells us how she and her husband Tim have responded to the tragedy and injustice and are making meaning in Alex’s memory. Tammy shares about their relentless journey through the medico-political-legal system in their efforts for justice, for truth, and for systemic change so that other families don’t suffer the same needless institutional horrors.
In the first part of the interview, you’ll hear Tammy’s neighbour in the background using a power tool to build an Ark or something, it’s kind of annoying, but it’s short lived, and fades away as Tammy recounts Alex’s last day.
Connect with Tammy Smick on twitter: @TammySmick
Be a podcast patron
Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.
Premium Patrons get access to video versions of podcasts for $5 / month.
Be my Guest
I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
Need a Counsellor?
Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
**For my health and life balance, I limit my number of counseling clients.**
Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Monday Jun 15, 2020
Monday Jun 15, 2020
As a child, Amber had a very rare illness that made the small blood vessels in her skin, joints, intestines, and kidneys inflamed and bleed. Amber was so ill her mother thought Amber was dying.
But Amber survived, got married and had children and thrived...until 3 days after having her gallbladder removed, when she experienced horrendous pain, far worse than the pain of childbirth.
Painkillers did little to stop the upper abdominal pain Amber was experiencing, and when her blood tests came back normal, doctors suggested Amber was faking it to get pain medication.
But the doctors weren’t listening to Amber’s reports that pain medications didn’t help, and sometimes made the horrific pain even worse. In spite of writhing in pain on the emergency room floor, Amber’s pain was often minimized or outright dismissed and she was labeled a drug seeker.
While Amber’s illness turned out to be a rare complication of gallbladder surgery, her experience of pain being dismissed, or being accused of lying, or of having psychological problems, is not rare.
In fact, it is hard to find any one with a complex or rare disease that has not experienced a doctor or nurse accuse them of faking pain or psychologically manifesting illness. It is so common, that it is a reflection of the culture of arrogance among health care workers, especially physicians.
It also explains why so many people with complex or rare diseases have medical PTSD. Few things are more traumatic than being incredibly sick, and by extension extremely vulnerable, and being accused of lying about it. This is why so many people distrust doctors.
Connect with Amber:
Amber's channel: Spincter of Oddi is Real Youtube
Be a podcast patron
Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.
Premium Patrons get access to video versions of podcasts for $5 / month.
Be my Guest
I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
Need a Counsellor?
Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
**For my health and life balance, I limit my number of counseling clients.**
Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Monday Jun 08, 2020
Monday Jun 08, 2020
Growing up in the shadow of Cape Kennedy, Adin Burroughs had designs on becoming an astronaut. But When Adin’s body started rejecting any food he ate with cramps, fever, vomiting, diarrhea - he of course went to his doctor. In Adin’s family, a lot of people have problems with their gall bladder, and Adin told this to his doctor. The doctor ran some tests and declared Adin’s gall bladder as well functioning.
But for the next few years Adin was not able to consume solid food and he lived on soup - all the while seeing numerous specialists in an effort to determine why his body was rejecting the foods he ate.
During the worst periods, Adin would have 27 hours of cyclical vomiting in which he wished for the sweet release of death. As if this wasn’t bad enough, Adin also has the neurological disease of MEcfs and it keeps him bedridden half the time.
In this interview, Adin and I also talk about the relationship between COVID and MEcfs, and how the pandemic may be the best thing to ever happen to MEcfs research funding, care and support.
SHOW NOTES:
| 0:04:30 | Adin was born in Orlando, Florida - his parents were rock music promoters - but his parents divorced a couple of years after Adin was born - his mother remarried, and his step father is a college professor of psychology |
| 0:05:30 | Adin was entralled with the nearby by rocket launches and had aims to be an astronaut - but his health came crasing down in 2003 - he had 3 jobs and was on Reserve Duty in New Mexico, and flying to the East Coast to write distributed simulations |
| 0:06:30 | Adin went to the UK to present to the United Nations and then flew home, staying awake for 72 hours - when he got home, his wife was volunteering and he went to help her all day, still no sleep - was awake for 96 hours - and picked up a flu bug with others in his social circle, and half got CFS |
| 0:07:30 | Adin never recovered, he had myalgic encephalomyelitis / chronic fatigue syndrome (ME/cfs) - Adin was admitted to the hospital with 105 degree temperature - they gave him chilled IVs - Adin's job was like an air traffic controller |
| 0:08:30 | About half the people who got the flu with Adin, did not recover, a well defined cluster for studying - but Adin's doctor just shrugged when Adin didn't recover - after initially getting sick, Adin mostly recovered and went back to work - but his temperature flipping around - in the Air Force office they took a thermometer and could see his temperature cycle from 96 to 102 in about 10 minutes - they sent him home |
| 0:09:30 | Adin's wife had to come with him to meet the top brass and help explain what was going on as Adin had developed aphasia (inability to recall words / speak) |
| 0:10:30 | They discovered that Adin's body couldn't control its temperature over 75 degrees, so he had to stay in an air conditioned bubble - his wife quit her job at the University of New Mexico to shuttle Adin to doctors - they thought he had cancer, but couldn't find it - Adin suffered with tachycardia and low blood oxygen saturation, same problem Covid patients are having |
| 0:11:30 | Adin saw many specialists - Adin takes a medication to slow down his heart rate - he takes more than people with heart failure - it took about a hear to see the 6 or 7 specialists - Adin's mom was diagnsoed with MEcfs in 1992, so he knew what the symptoms looked like |
| 0:12:30 | When Adin's body temperature was so erratice, he thought he may have MEcfs, but hoped it wasn't - Dr Nancy Klimas helped Adin's mom, and then Adin |
| 0:13:30 | Adin's wife started to show ME symptoms in 2009, after the birth of their son - she had mild symptoms as first, but in the last year she's gotten sicker - Adin is bed bound about half the time, his wife is bed bound about a 1/4 of the time - she's still in the 'push - crash' phase of exerting too much and then getting sicker and unconscious for 8 - 10 hours |
| 0:14:30 | About 1.5 years ago, their 10 year old son started to show ME symptoms - its hard for a kid: he goes to the playground, but then literally falls over when he gets home and sleeps until morning |
| 0:15:30 | It is hard for adults with ME to learn to not over exert so they don't get sicker, but kids are supposed to be running around - Adin has his son use a Virtual Reality (VR) machine for tai chi, meditation, etc |
| 0:16:30 | Adin also had another medical error: in late 2000s, the ME caused him severe gut problems, he couldn't eat solid food for about a year - Adin was retired from all 3 jobs, but his employers fought over paying Adin, and it was 3 years without pay |
| 0:17:30 | So they lost their house, they lost everything - they had some volunteer lawyers help - during this time, it didn't matter what Adin ate, he'd get stomach cramps, a fever, then vomiting and diarrhea |
| 0:18:30 | Many of Adin's family has gall bladder issues, and tells his doctor this - Adin does a 'fat challenge' (eat a high fat meal) but it had no effect - after 1-2 years, Adin finally got a referral to a specialist at a hospital |
| 0:19:30 | They did a simple sonogram of his abdomen including his liver, stomach and gall bladder - they said Adin's gall bladder was normal - so Adin's GP started barium enemas for lower GI testing - Adin said its some of the worse testing he's been through |
| 0:20:30 | It was painful because they filled his GI tract and put it under pressure to see how it would react - the tech performing the procedure complained the entire time that he was working |
| 0:21:30 | Adin had a lot of testing - endoscopies, colonoscopies, biopsies, food challenges - but the symptoms were only coming intermittently, and then it would be a 27 hour cycle where he literally wished for death |
| 0:22:30 | Adin was in the military, he's been in PoW camps, he knows what pain is like - Adin has a friend who has HIV, and she says it is nothing compared to the horror of ME - but Adin's attacks were lasting 27 hours, the best the doctors could do was give him some meds to control the vomiting and nausea |
| 0:23:30 | But Adin needed to take them at double or triple the max dose - Adin was experiencing cyclical vomiting, kicked off by the gall bladder attack, in conjuction with the autonomic dysfunction caused by ME |
| 0:24:30 | The high doses of those meds were just enough to stop Adin from killing himself to escape the pain and suffering - Adin had said to his wife that he couldn't live that way - the attacks would sometimes also induce tachycardia |
| 0:25:30 | Adin had to go to the ER a few times, but they didn't know how to treat him, his heart, his vomiting - they were scared they were going to lose him - finally, Adin's doctor suggested Adin see a Mayo specialist in cyclical vomiting syndrome |
| 0:26:30 | Adin's evaluation at The Mayo was unlike anything in the regular medial system - he saw 5 specialists a day for a week |
| 0:27:30 | Mayo said that Adin's gall bladder is sludge - it is fine sometimes, but other times fills with sludge - it was easy to see on a common test |
| 0:28:30 | If Adin's doctor had of done the test, it would have cut 2 years of living hell out of Adin's life - Mayo also suggested that Adin's underlying autonomic dysfunction should be looked into, and they had him meet another Mayo specialist - but Mayo would never say anything about Adin's ME, even though he'd been diagnosed by leading doctors and had objective results |
| 0:29:30 | Instead, Mayo would only refer to it as autonomic neuropathy, either central or peripheral - or they would break it down and call it 'post viral fatigue syndrome' - Adin was able to gather from speaking to the staff off the record, that the Mayo had a policy they wouldn't see a patient who had MEcfs |
| 0:30:30 | Adin thinks Mayo had the anti-ME policy because they didn't understand it, they didn't have a black and white test for it, and the expense - most people with MEcfs are unable to work |
| 0:31:30 | A doctor from the VA (Veterans Affairs) wouldn't permit Adin to have a cardiology test because he refused to do an exercise stress test (exercise is contraindicated for ME) - a psychologist told Adin that he was medicalizing psychological issues |
| 0:32:30 | Adin would ask the doctors straight up: 'do you think I'm depressed?' - he wanted them to look him in the eye - they'd say 'no, not depressed' - Adin would ask if it could be MEcfs, and they'd say 'yes', but didn't do anything about it - patients with ME are marginalized, psychologized and traumatized - they are refused services, ridiculed, accused of lying |
| 0:33:30 | Most doctors get stuck on looking for a horse, when ME is a zebra - another analogy is 5 blind men feeling an elephant, none of them has the big picture |
| 0:34:30 | Adin hopes that an outcome of Covid is a systems engineer approach, to take a look at the whole body - it seems self evident medicine should already be doing it |
| 0:35:30 | Covid may be the best thing to happen to ME research - Covid is a systemic infection, and a sign it is like ME |
| 0:36:30 | Unfortunately, there are going to be a lot of Covid survivors who will understand what ME patients have been going through - at least now doctors are realizing that an infection can impact multiple systems - doctors just couldn't wrap their heads around that - they think polio was a one off |
| 0:37:30 | ME was initially called atypical polio - in spite of many medical discoveries, our knowledge of the human body is embryonic - they are just discovering how metabolites impact human health |
| 0:38:30 | Scott says HIV is a walk in the park, but with ME he can't even walk in the park - for Adin, his friend with both HIV and ME saying that living with ME was multiple times harder |
| 0:39:30 | She had experienced multiple trauma, but none of it was from HIV, and she was around in the 80s - she was traumatized by how the medical system treated her ME |
| 0:40:30 | Scott says that 99% of people with HIV and access to meds, are healthier than 99% of people living with ME - it was surprising for Adin to learn that living with ME was so much worse than living with ME |
| 0:41:30 | For the last few years on May 12th, ME patients globally have used their empty shoes as a symbol of the 'millions missing' from life, work, play due to ME - now COVID patients who have not recovered are also displaying their shoes |
| 0:42:30 | Scott says what would also help ME research, is if celebrities and politicians got COVID and did not recover, but develop ME - some celebrities have ME, but they hide it - Cher considers herself recovered |
| 0:43:30 | Celebrities have done the exact opposite of what they needed to do - a famous soccer player got ME, but didn't want to help the community - when Adin was volunteering with Pheonix Rising (a forum for ME patients / caregivers), he met a number of writers who did not disclose their illness because it would impact their career |
| 0:44:30 | The exception is Seabiscuit author Laura HIllebrand - but most don't 'come out' to let the public know that ME is not rare |
| 0:45:30 | There are parallels between ME and HIV in regards to internalized shame - in the early days of AIDS, the slogan was "Silence = Death" - but with ME, there is no high body count, it makes people more susceptible to death by other illnesses - there has only been one case of a death listed as due to ME |
| 0:46:30 | If Adin's mom was to die today, ME wouldn't even be mentioned on her death certificate - the medical marginalization of ME is deeply buried in institutions - for Adin and his family, the quarantine has had no impact - it is the rest of the world that is adjusting |
| 0:47:30 | But they don't have the nausea, pain and suffering that people living with ME have - humans react very differently when things happen to them personally |
| 0:48:30 | Adin deeply hopes that COVID patients recover and that we learn a lot more about how viruses interact with the genome, metabolome, mitochondria - we'll see if the opportunity is squandered or not |
| 0:49:30 | Scott wonders if his HIV meds is why he's healthier than most people with ME - a doctor said that people with HIV and meds who got COVID were not getting as sick as people without HIV (and HIV meds) |
| 0:50:30 | Adin is hopeful for remdesivir for COVID - and that the FDA will do its job |
| Connect with Adin: https://facebook.com/adindb | |
| https://twitter.com/adin |
Be a podcast patron
Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.
Premium Patrons get access to video versions of podcasts for $5 / month.
Be my Guest
I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
Need a Counsellor?
Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
**For my health and life balance, I limit my number of counseling clients.**
Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Monday Jun 01, 2020
Monday Jun 01, 2020
Evidently having a doctorate in physical therapy and working in the health care field does not protect you from medical incompetence, arrogance and errors.
When Dr Jill Murphy went to the ER with potential stroke symptoms, the staff called the neurologist to examine Jill. But he refused, so the staff sent Jill away without a diagnosis, but with instructions to buy some baby aspirin.
This was the first in countless medical encounters where Jill was disbelieved, dismissed or denigrated. Meanwhile, she continued to have countless mini strokes. Yet doctor after doctor failed Jill. They gave her a ‘conversion disorder’ diagnosis, saying her symptoms were all in her head, telling her husband that she must have been sexually abused as a child.
But Jill is a smart and determined person, and her persistence paid off when she finally - years later - got a proper diagnosis that required a heart ablation and pacemaker and life-long medication.
Now Jill is using that same determination - and lessons learned from being a disbelieved patient - to raise awareness and education among the public and health care workers and will soon be publishing her first book, Physician Heal Thy Self.
Connect with Jill:
https://facebook.com/DrJillMurphy/
Twitter: @MotionWorksPT
SHOW NOTES:
| 0:04:00 | Jill grew up on a dairy farm in north east Wisconsin, so a big Packer fan - youngest of 3, and we were expected to work - we're German, so lots of work and lots of cleaning - lots of work on the farm, no matter how old you were - looking back it was great, I learned how to work, but as a child I would have rather been at the pool with friends |
| 0:05:00 | Jill went to Concordia University, north of Milwaukee, for Athletic Training and Sports Medicine - and Jill also got her Masters in Physical Therapy there - her father was supportive of academic and athletic pursuits |
| 0:06:00 | Jill has an amazing career in Green Bay, Wisconsin, and completed her Doctorate in Physical Therapy (PT), it was a lot of work but Jill loved learning - Jill met and married her husband, bought a house, had a first child |
| 0:07:00 | Jill had no health issues until she had started her own PT clinic, and it creeped up on her during her 3rd pregnancy - in her 20th week she had heart arrythmia and ended up in the hospital - but the cardiologist said Jill's heart rate was not 100, said she was not a cardiac case and walked out - thankfully her OB (obstetrician doctor) put Jill on medication - a beta blocker - to control her rapid heart beat - but she never got a diagnosis |
| 0:08:00 | Jill was still able to work and was teaching a 'build a better body' class - as she got more pregnant, the more short of breath she got and couldn't speak to explain the drills while doing them, so she had to stop that class - the doctor increased the dose over the summer because of the warmer weather and the increase in tachycardia Jill experienced |
| 0:09:00 | Jill was an athlete, a marathoner, active her whole life, os her resting heart rate was about 60 - but now she was getting short of breath and rapid heart rate with little exertion |
| 0:10:00 | Jill was assured that whatever was going on with her heart rate was due to her pregnancy, and once she had the baby, Jill's heart problem would go away and slowly wean off the medicine - after a few months Jill tried to wean off the medicine, but it messed with her blood pressure - Jill saw a nurse practitioner who was helpful for managing medicine, but Jill still didn't have a diagnosis |
| 0:11:00 | That was winter 2014 - Jill thought she'd have to be on the medication for the rest of her life, she couldn't workout - and she kind of gave up when the doctors weren't concerned |
| 0:12:00 | So Jill went to the nearby Mayo Clinic to see a cardiologist, who ran a bunch of tests |
| 0:13:00 | During the echo cardiogram the staff kind of rushed in and asked if Jill was an athlete - she didn't know it at the time, but she had some enlarged areas of her heart - they didn't seem worried, but a couple of weeks later they gave her a clean bill of health - that was summer 2014 |
| 0:14:00 | Jill's primary physician moved, so she had to find a new GP - Jill remembers asking the new GP if there was a better solution for her heart problem so she could live a normal life, and the doctor's response was 'if you keep mentioning this heart problem, I'm going to diagnose you with anxiety' |
| 0:15:00 | A couple of weeks later Jill was watching tv and had her first transit ischemic attack (TIA), in the past called a mini-stroke, now known as a warning sign of stroke because the symptoms go away within 24 hours - as Jill watched tv her left arm and leg felt weird and heavy, she had trouble getting up from the couch and had to roll off it |
| 0:16:00 | Being a PT, she was trying to figure out what was wrong, she looked in a mirror and her face looked fine - Jill kind of knew what it was, but how could she go to the ER when the Mayo had just given her a clean bill of health, and her GP thinks she's anxious, so Jill went to bed - the symptoms were gone the next morning - she tried to read about possible treatments |
| 0:17:00 | Her 6 year old wanted to run the local 5k, so Jill ran it with her and she didn't want to quit and hamper her daughter's experience - they finished and Jill was so tired she didn't know how she could drive home safely |
| 0:18:00 | On New Year's Eve 2014, Jill had a busy day at her clinic then went to her dentist - the dentist injected Jill's gums with a pain killer and her heart started beating really fast, but it calmed down in a few minutes |
| 0:19:00 | That night after dinner Jill was very tired and went and sat down, but was too tired to read, and the numbness in her left arm, leg, face was worse |
| 0:20:00 | Jill was worried she was going to drop her 1 year old because she was so weak and tired - Jill tried somethings to bring back the feeling in her arm, leg and face - it was far worse than in the summer |
| 0:21:00 | Jill's husband took her to the ER, with 3 kids in tow - they identified right away as a code stroke, so they did a complete work up - the doctor congratulated Jill on 'selecting' their hospital to come to, as they were a certified stroke center - they did CT and MRI and other tests, but did not tell Jill what was wrong |
| 0:22:00 | Something strange also happened that night, only later would Jill figure out it was unilateral neglect, it means you don't want to attend to one side of your body - Jill spent the evening looking to her right side in the room, no desire to look left - a nurse helped Jill into a wheelchair because she couldn't walk - finally at midnight the ER doctor comes back |
| 0:23:00 | He tells Jill she can go home, but to stop at a drug store and buy some baby aspirin and take 4 of them and the symptoms will go away in 24 hours - Jill asked what was wrong, her left side was weak, she couldn't walk, but he just walked out without answering - so Jill asked the nurse what was wrong with Jill's body, but the nurse said 'we don't have any beds any way' - Jill wondered why they couldn't transfer her to another hospital, but she trusted them |
| 0:24:00 | But the symptoms didn't go away in 24 hours, Jill is still weak on her left side - Jill used to run marathons, but now after 1/4 mile her left side gets weak from neural fatigue and she has no sense of where it is in space, so she has to look where she puts her foot |
| 0:25:00 | So January 2015 was horrible - her ER form said she had a TIA (trans ischemic attack) and was to see a neurologist - 2 days later she went to see the doctor - Jill was limping as she entered the doctor's office |
| 0:26:00 | The doctor snarkily said 'why are you walking like that?' - when Jill said the notes later, the doctor reported that Jill was fine - Jill realized that reality and what doctors put in there notes were 2 different things - they wouldn't record anything that didn't fit their diagnosis - a couple of days later, Jill saw her 'headache' doctor, also a neurologist - he had known Jill for years, so knew she wasn't making up her symptoms, so he ran a bunch of tests |
| 0:27:00 | Jill had told all the previous doctors about her heart racing problems, but none of them paid any heed - Jill had a headache all of January, had a few more TIAs and a huge reaction to a medication where her throat almost closed no one could figure out - Jill couldn't really work during January |
| 0:28:00 | Jill didn't have disability insurance, so needed to get back to her business - she also kept trying to see other doctors but was given a 'conversion disorder' diagnosis - Jill had been given Topomax medication for blood pressure, but started researching its side effects |
| 0:29:00 | Jill started to have trouble reading, comprehending, thinking - she burst into tears in a McDonald's drive thru when she couldn't figure out how to order her daughter a happy meal - it kept getting worse over the next few days, she had trouble eating and chewing food - she told a doctor that her throat wasn't working, but they didn't care |
| 0:30:00 | The ER refused to give Jill a requisition to see a speech therapist in spite of their obviously being something wrong with her speech - they told her it wasn't a stroke, and told her husband it was probably because she was sexually abused as a child - Jill knew that was laughable |
| 0:31:00 | Because she couldn't swallow, she had stopped taking the topomax medicine, and her throat started to release, and she realized it was the medication causing the throat problem - but it took her about 6 months to get the conversion disorder diagnosis removed from her medical record - 'conversion disorder' is a term to describe psychosomatic, 'all in your head' |
| 0:32:00 | Jill didn't buy into that - when she stopped the topomax the symptoms of not being able to eat or swallow stopped - Jill continued to try to work, but her left side weakness tired her out quickly and she couldn't support her body without support for very long - she did more research about her heart arrythmia |
| 0:33:00 | Jill decided to drive 7 hours to a conference, in spite of her sketchy health and heart - but before she left she saw a electrophysiologist heart specialist and was fitted for a Holter monitor to monitor her heart and said Jill may have intermittent tachycardia, and off she drove |
| 0:34:00 | Over the next few months Jill gradually increased her workload and then saw the electrophysiologist again for the Holter results - it showed Jill's heart would go faster for no reason - but when Jill tried to make a follow up appointment, the doctor said she was fine and refused to see her |
| 0:35:00 | Jill continued to work on PT exercises, and started a walking program - she could still only walk about 1/4 mile before her foot started flapping - her husband took on a lot of household chores while Jill focused on recovering and keeping her business going |
| 0:36:00 | Jill saw some other neurologists, but to no avail in getting a diagnosis - she went to Mayo again, but it didn't go well, it was a poor clinical exam - then early May was a nice sunny day |
| 0:37:00 | and Jill thought 'maybe they're right, maybe its all in my head, if I pretend it doesn't exist, I can do my 2 mile run' |
| 0:38:00 | Jill made it about 1/4 mile before her left foot became fatigued, but she continued by walking - she got worse, the numbness was spreading up her left leg and slowly limped back home |
| 0:39:00 | Jill concluded that the stroke stuff wasn't 'in her head' after all - Jill was also having visual problems on her left side, running into things, it was part of the unilateral neglect - Jill went to visual therapy, but it made her nauseous sick every time |
| 0:40:00 | All the allied health professional could see Jill's deficits, but the doctors couldn't - over time Jill built up some endurance - but the day after she tried to run, her ankle hurt a lot and she ended up needing ankle surgery |
| 0:41:00 | Jill looked into the intermittent sinus tachycardia and found other tests she should have - she finally found a doctor in Iowa who put Jill on aberdeen medication, popular in Europe, recently approved in the US |
| 0:42:00 | It would reduce heart rate, without reducing blood pressure, and Jill had normal blood pressure - Jill hoped that controlling her heart rate would prevent anymore TIAs or strokes - it seemed to help, but was super expensive, 100s of dollars a month, so she was ordering it online, but it would take weeks for delivery - Jill tried to cut her dose until the meds arrived so she didn't have to pay $60 for 1 pill locally |
| 0:43:00 | And Jill had another TIA that day, so she realized her arrythmia and stroke were related - but it took forever for any physicians to recognize that - Jill saw another specialist, a breath of fresh air - he implanted a heart rhythm monitor |
| 0:44:00 | Jill was still having TIAs, still limping - the heart monitor was catching Jill's heart arrythmias - but Jill was still having them and had maxed out the dose on the medication |
| 0:45:00 | It took a couple of years for Jill to learn that a heart ablation procedure could fix the arrythmia - ablation is burning the part of the heart that is causing the arrythmia - Jill had to go through 7 doctors to get the procedure because inappropriate sinus tachycardia is the like the fibromyalgia of pain, no doctors want to see you |
| 0:46:00 | Jill had the ablation, but needed a pacemaker a week later - the ablation procedure runs a tube up the femeral vein to the heart, use their software to determine the origination of the arrythmia, and then burn out that area |
| 0:47:00 | Jill went into A-Fib during the procedure and they had to shock her to get heart beat back to normal - they found several areas on her heart for ablation treatment - Jill also had a spot on the outside of her heart that was ablated |
| 0:48:00 | Jill was hoping the ablations and pacemaker would stop the strokes, but they didn't - Jill continued to have TIAs, some scarier than others, trips to the ER |
| 0:49:00 | Jill continued to research and seek out specialists - she learned that people can have strokes before their first A-Fib (Atrial Fibrillation) - so still a grey and growing area of research |
| 0:50:00 | Jill went back to the original ER doctor - Jill was worried that others would receive the same poor and mistreatment - Jill should have been given TPA, a blood thinner that would have cleared out any possible clots - if she had been given TPA, Jill would be back running and leading a normal life - so Jill wrote a lot of letters to the hospital, but only their attorneys replied - she tried writing to their stroke committee, but no one responded |
| 0:51:00 | When you're dealing with a stroke the health system won't acknowledge, it is super hard mentally - she also didn't want people in her home town to know she was struggling because it would affect her business - Jill was trying to figure out what happened that night in the ER, why did they send her home? |
| 0:52:00 | Jill later learned they had paged the neurologist, but the neurologist decided not to come in - but the ER doctor had a good reputation, and Jill tried to figure out how this happened under his watch - so a few years later when Jill was in the ER again, this doctor is trying to figure out why Jill still has symptoms from a stroke - when she told him it was his mistake, he felt very bad and had her transferred to a better hospital by ambulance to get a thorough stroke work up |
| 0:53:00 | Jill says it was nice to see that he really cared, and that it wasn't his fault, that he had believed Jill - could he have pushed harder for TPA medication, or a transfer to another hospital, or make the neurologist come in - eventually Jill saw a cardiologist who put her on eloquist (an anticoagulant), and that with a baby aspirin has controlled her arrythmia |
| 0:54:00 | 3 things are probably contributing to Jill's strokes: thick blood, a small artery, and heart arrythmia, so its not a black and white diagnosis - this spring Jill has had some right side TIAs, and now the doctors acknowledge that 5 years ago she did have a stroke |
| 0:55:00 | Jill's life before was having a TIA every other week and trying to decide 'how bad was it?' - it was not a good existence - but now she doesn't have those symptoms, her arrythmia is better, she's had some complications from the pace maker surgery - Jill has a new lease on life |
| 0:56:00 | Jill is back working - but she still has fatigue issues with her left side - she still has some vision issues which cause nausea, so she takes a medication for that - but can still only walk about 1/4 mile - Jill had to have a 2nd ankle operation |
| 0:57:00 | Jill has to use a motorized scooter for any activity that requires a lot of walking - she can't do prolonged standing or walking - its hard for a former marathoner to have to use a scooter |
| 0:58:00 | Jill says she's grateful for what she does have, it could be far worse - Jill has had to accept what happened in the ER years ago - she's learned you can't trust blindly, and that's scary, and she's in medicine |
| 0:59:00 | Jill says to push for answers and treatment - and to advocate for yourself - if she didn't advocate for herself, she'd be on disability or dead given some of the complications she's had - Jill has written a book about her experiences navigating the health care system, sharing tips and tools |
| 1:00:00 | Jill covers when she didn't get care, or proper care, or the best care, things that were missed - she's tried to go back and correct things, but you can't correct everything - Jill's attitude is to try to correct the things she can - she doesn't want to dwell on the things she doesn't have, but focus on being grateful for what she does have - and to help so people don't have her experience, especially young people with strokes - the highest growing cohort for stroke and most likely to be missed in post partum women |
| 1:01:00 | Jill is also working with cardiologists to recognize that it is not only stroke, but tachycardia to be looking for - so Jill is trying to bring something good out of something negative, making meaning out of her experiences |
| 1:02:00 | Jill has her 1st book manuscript finished, tentatively titled "Physician Heal Thy Self" - her 2nd book just needs 1 more chapter to be written - connect with Jill at DrJillMurphy.com |
Be a podcast patron
Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.
Premium Patrons get access to video versions of podcasts for $5 / month.
Be my Guest
I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
Need a Counsellor?
Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
**For my health and life balance, I limit my number of counseling clients.**
Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Monday May 25, 2020
Monday May 25, 2020
When I first heard of laser eye surgery many moons ago, my first reaction was suspicion - on the face of it, it sounded very dangerous. But after years of exposure to laser eye surgery advertisements, it squirmed its way on my list for consideration so that I didn’t have the bother of contact lenses.
After interviewing Troy (a pabout his experience having his vision permanently damaged, and hearing what he’s learned about laser eye research and the ophthalmologist industry, I will never ever get laser eye surgery. The risks are just too great -- especially the suicide inducing pain of corneal neuralgia, where it feels like pins are constantly being poked into your eye.
If you’re thinking about getting laser eye surgery, listen to what happened to Troy, and then take that into account in your decision.
Show Notes:
W5 Documentary:
https://www.ctvnews.ca/ctv-national-news/video?clipId=1654087
Dentist awarded damages for eye procedure:
FDA Official wants to ban Lasik:
https://www.google.ca/amp/s/www.phillyvoice.com/former-fda-adviser-lasik-dangers-eye-surgery/amp/
Canadian class action lawsuit:
Jessica Starr - meteorologist:
https://people.com/tv/meteorologist-jessica-starr-suicide-family-speaks-out/
More info (Melanie B):
Troy's Facebook page:
| 0:04:00 | Troy (not his real name) grew up on a farm in Saskaetchewan in a normal family - great childhood, good parents who instilled good morals |
| 0:05:00 | Troy did have some flus as a child, but otherwise healthy until recently - he went to university and got a degree and become part of the rat race - he had a pretty good career with good friends and relationships |
| 0:06:00 | Troy wants to share his experience and what he's learned about laser eye surgery, including retinopathy, the procedure he had - Troy also wants to talk about the Canadian Medical Protective Association (CMPA), as its related to laser eye surgery |
| 0:07:00 | Troy has done a lot of research - Troy says lasers are dangerous weapons - the Geneva Convention has banned them in warfare - but lasers are approved by Health Canada and are used by lots of doctors |
| 0:08:00 | Troy's consent form for the procedure listed a lot of potential harms - a lot of information our brain processes, comes through our eyes - so if our eyes are injured by laser, it is an unnatural injury, unlike dirt, grim, etc |
| 0:09:00 | The retina does not heal, it has not evolved a regenerative capacity - there are a few different types of laser used in laser surgery - like in cataract surgery |
| 0:10:00 | The retina sits at the back of the eye - as we age, the retina can sometimes pull away from the back of an eye |
| 0:11:00 | This can cause 'flashers', a flash of light - it happens to a lot of people as they age |
| 0:12:00 | But Troy had 'floaters' in his vision and that's why he went to an opthamalogist in the first place, something he wishes he had never done - his floater was only in his right eye, and that was back in 2017 |
| 0:13:00 | In retinalopathy, they will shoot the laser around the floater, the theory is that it will seal the tear (aka floater) so it does not grow larger and cause detachment - Troy had no problems with that procedure |
| 0:14:00 | In 2019, the opthamalogist tells Troy he has a small tear in his left eye |
| 0:15:00 | Troy thinks most people will have floaters, and will have some retinal tearing later in life - the procedure Troy had done was to stop the the tear from getting bigger, but another procedure tries to destroy the floater, but there is a risk to the optical nerve |
| 0:16:00 | During a laser procedure, you are awake, and if you move your eye during the laser, it can permanently damage your eye - Troy didn't want the 2nd procedure, but he was convinced |
| 0:17:00 | The procedure hurts, it is painful - the reason for the retinalopathy procedure is to prevent further tearing or detachment of the retina, but one of the risks of the prodecure is retinal detachment |
| 0:18:00 | Troy asks himself now, why did he sign the consent without asking questions |
| 0:19:00 | The consent form includes to circles representing the eyes to indicate where the procedure was performed - once the laser procedure is done, it is forever - there is no undoing it |
| 0:20:00 | From the 2019 laser procedure, Troy knew within a day or two someting wasn't right - he had visual disturbances - one moring he woke up in darkness, and as he moved his eyes, a fireworks explosion - that was disturbing |
| 0:21:00 | Troy also experiences symptoms when moving from bright sunlight to indoors, called 'while flickering lights' because his cones and rods (in his eyes) are misfiring - these happen every day, and flourescent light also set it off |
| 0:22:00 | Troy went to the doctor and was told they would go away in a month - then every time Troy went back, the doctor kept extending the date...3 months, 6 months -- but within the first week the doctor suggested Troy pay $100 to get retinal pictures |
| 0:23:00 | Troy wonders why the retinal pictures weren't done beforehand - even when he got the retinal pictures done after, he had trouble finding someone to read them - then he realized all these opthamaologists use lasers in one form or another, so they can't say there is a problem with lasers, when they themselves use lasers on patients - so its difficult to get a clear answer, so Troy has had to piece together what happened to him |
| 0:24:00 | Troy ascertained the doctor had made 4 strikes with the laser, but 3 of them were too close to the center of his eye, within his peripheral vision, so that's why he has these strange visual phenomenon |
| 0:25:00 | A problem common to all laser procedures, Lasik, cataract, etc, is dry eye - with retinopathy procedure, the laser passes through, and damages, the cornea to get to the retina, but the cornea usually heals - the eye is its own biosphere to protect against virus, dirt, etc - but when the cornea is dirsupted, it can cause dry eye, a major problem |
| 0:26:00 | Without proper lubrication in your eye, it is forever exposed to all kinds of infections - so Troy has to be very careful with his left eye, always has to clean it - so dry eye is a potential side effect of all laser procedures |
| 0:27:00 | Headaches, soreness, infections from dry eye - the toughest part for Troy is the flickering light in his vision - his father was a welder, so Troy wears welder grade sunglasses outside, so that when he moves inside, the difference isn't as big, and his symptoms aren't as inense |
| 0:28:00 | The welder lens is called a #5 lens - it was through experimenting that Troy discovered it helped him - as the sun goes down, the effect on his vision diminishes |
| 0:29:00 | It is most prevalent in the middle of the night - Troy says Lasik and PRK procedure patients have a lot of trouble at night, especially driving as they see star bursts, so it makes it impossible for them to drive at night - these are elective surgeries |
| 0:30:00 | The drops for dry eye costs $35 a month, and it will be needed forever - so not really saving money over buying glasses that can last for years...and your eyes don't hurt |
| 0:31:00 | Troy is sharing so other people know about these potential problems - as he researched, he found there wasn't much info about the procedure he had done (retinapathy), but he did find some research on Lasik and PRK - and there are 100s of 1000s of people suffering and committing suicide - there is a horrible illness called corneal neuralgia caused by Lasik |
| 0:32:00 | Troy says there is a great program on W5 (tv show) called Deadly Vision about the risks of Lasik - Troy says anyone who watches that and still wants Lasik is crazy - corneal neuralgia is like needles sticking into your eye all day long, extreme pain - a meteorologist in Detroit committed suicide a few weeks after Lasik surgery - a millionaire in Ontario was in so much pain he took his own life |
| 0:33:00 | A young man in military, took his own life because of corneal neuraglia - Canada says its 1 in 10,000, and there are 80,0000 procedures a year, so that's 8 people - but nobody knows the real numbers because there are no independent studies - and cataract surgery is like Lasik, so the same risks apply |
| 0:34:00 | Most cataract surgery is on senior citizens, so any symptoms they have attributed to old age - Troy thinks people should understand the risks of that surgery |
| 0:35:00 | Troy says we have to remember that all this info comes from the corporations that make the laser equipment - most of the opthamalogists operate as independent and there is a lot of money they are making, but there is no indepedent accountability - most of the eye clinics operate outside the provincial jurisdictional and regulatory system |
| 0:36:00 | If you go to a private eye clinic and then have a problem and go to the ER, they will tell you to go to the private clinic, except the private clinic doesn't offer after care - they make money off the procedure, but if you need after care, you have to go to the regular system - the only thing they can offer is anxiety meds |
| 0:37:00 | Troy thinks unless you have an emergency, be careful about having an eye procedure |
| 0:38:00 | Some people have had success with the procedures, but there is also the risk - Troy wants to warn people, they should think twice because there is little info about retinopathy risks |
| 0:39:00 | A former approving FDA official said publicly that laser eye surgery should be outright banned - his research shows complications up to 30% - but the eye doctor say less than 1% - the Canadian Opthamology Association says corneal neuralgia is 1 in 10,000 |
| 0:40:00 | There are all kinds of other problems - dry eye, vision problems, blindness - so 1 in 3 people are going to have a problem - talk to people with Lasik procedures, and many will tell about dry eye - Troy tried to tell the CNIB (Canadian National Institute for the Blind) about the laser injuries, but they didn't care |
| 0:41:00 | Troy knows of a woman who started to go blind after Lasik surgery, the doctor gave her a business card to the CNIB and said good luck with that |
| 0:42:00 | There is a lot of money in the business, as they advertise a lot on Facebook, there ads are always popping up - there is a class action lawsuit in Canada against one of the Lasik companies, LasikMD, for corneal neuralgia sufferers - but it doesn't include the other providers of Lasik |
| 0:43:00 | Troy thinks the government should be looking into the quality of work and research by the manufacturers - the research is often funded by the company that will make money off the product - Troy thinks Health Canada would be keeping people safe |
| 0:44:00 | But you will hear a lot of people who had successful Lasik surgery - while the retina doesn't heal, the cornea has evolved to heal itself, and that's why there is success - but some people's cornea doesn't heal |
| 75:00:00 | Apparently there are more nerves in the eye than any where else in the body, and that is why corneal neuralgia is so painful - but where is the data and research - there are probably millions of people around the world suffering from Lasik procedures |
| 0:46:00 | Troy has some recommendations, wishes someone had told him before his procedure - he likens it to taking your car to the mechanic and he shows you the broken part they will fix or replace, and won't do more work without your approval |
| 0:47:00 | Troy thinks a picture of the retina should be taken before deciding on the procedure so the doctor can show you exactly what and where the problem is |
| 0:48:00 | It only takes few minutes, they all have retinal cameras in their office - its your right to ask for that - and agree to whatever areas you want treated |
| 0:49:00 | Also consider if the area is within your field of vision - providing a retinal picture before the procedure is not part of their standard operating procedure |
| 0:50:00 | Retinal pictures after the fact have little use - Troy doesn't know if he was charged per laser strikes (4) or if for the whold procedure |
| 0:51:00 | It took 2 minutes, but it cost $500 - but there is no undoing Lasik surgerey |
| 0:52:00 | Troy has seen pictures of people who have had thousands of laser strikes - laser attaches the retina to the back of the eye |
| 0:53:00 | The medical malpractice set up in Canada is different than other G7 countries - Canada has more medical errors than the others - it is almost impossible to sue a doctor in Canada |
| 0:54:00 | A lawyer told Troy that any harm listed on a consent form is there because it has happened - Troy says it is important you have informed consent - in Canada, each provincial health agency pays the CMPA with tax payer dollars |
| 0:55:00 | Lawyers has $5 billion of tax payers dollars, and they have hired almost every major law firm in Canada, so they can't represent you |
| 0:56:00 | So finding a lawyer if very hard - and they want to make sure they are going to be paid, so it has to be a horrific case - a lot of the award in a malpractice is for lost future wages, so a lawyer needs a client that had a high salary |
| 0:57:00 | Back in early 1900s, the law was made to constrain a medical malpractice awards to a small amount - it is also hard to find an expert witness, as doctors are reticent to testify against each other |
| 0:58:00 | But the CMPA will hire 5 or 10 experts, because they know that if you lose, you have to pay all their legal fees plus their expert fees - that will bankrupt you - Troy calls it triple jeopardy: tax payers pay doctors and pay CMPA and pay your own legal costs |
| 0:59:00 | If you lose, you also pay their legal costs - so its not surprising that only 60 cases go to court, but only single digits win their case - so the chances of winning are so low, that it makes it virtually impossible, statistically zero. |
| 1:00:00 | Troy says people shoud avoid getting elective laser eye surgery - Scott says he'd thought about having Lasik, but 10 minutes into hearing Troy's experience and research, he's decided he's never getting laser eye surgery |
Be a podcast patron
Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.
Premium Patrons get access to video versions of podcasts for $5 / month.
Be my Guest
I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
Need a Counsellor?
Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
**For my health and life balance, I limit my number of counseling clients.**
Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Monday May 18, 2020
Monday May 18, 2020
Until I started doing this podcast, I was mostly ignorant to the extent of the harm sometimes caused by psychiatric and antibiotic medications. In spite of my own 2 week experience with disabling withdrawal symptoms from an antidepressant 20 years ago, and contemporary reports of withdrawal symptoms from friends and clients, I still had no idea how pervasive - and sometimes permanent - these brain injuries were.
As frightening as that was to learn, the prescriptions for psychiatric medication for depression and anxiety have soared in during the COVID pandemic.
And let’s face it folks, we are still in the early stages of the pandemic - if we get blue skies with double rainbows we may have a vaccine in 18 months, but that’s really wishful thinking - the global economy has taken an unprecedented hit, and that means many people’s jobs and financial security are going to be at further risk. This will only add to the feelings of anxiety -- but let’s be clear, it is normal to feel anxious about how the world is suddenly changing in so many ways. Learning coping skills, having strategies to feel more safe in an unknown future, and using supportive relationships are natural ways to feel better about feeling anxious.
In this episode, we hear what happened to Jocelyn Pedersen after taking a benzodiazepine for less than a week.
Jocelyn was so physically sick from the benzo brain injury, she had to spend much of the time horizontal on the floor with her baby while her neighbour’s helped with household chores. Jocelyn’s body was a complete mess: she couldn’t sleep, eat, watch tv, read, her bowels were dysfunctional and she was losing weight fast.
That’s just the start of Jocelyn’s journey with benzodiazepine medications -- a medication journey, as Jocelyn describes, that goes through madness.
Jocelyn’s health care experience is a textbook example of how the medical system pushes psychiatric medications without understanding how the meds can cause brain injury. This often leads to doctors denying side effects or withdrawal symptoms, effectively gaslighting the patient, psychologizing physical symptoms, and pathologizing human emotions.
It was a long arduous road for Jocelyn to get back to her usual high functioning self, and along the way she started sharing her experiences and what she learned and now Jocelyn has a large following on social media. On her YouTube channel Benzo Brains, Jocelyn shares real world information about benzodiazepines and strategies on successfully managing the withdrawal symptoms.
Jocelyn has just written a memoir about her experiences with benzos and the health care system called “Seeds of Hope: A Journey Through Medication and Madness Toward Meaning”.
Available on Amazon: https://t.co/267G0VaBiz?amp=1
| Connect with Jocelyn Pedersen: |
| People can pre-order Seeds of Hope: A Journey Through Medication and Madness Toward Meaning through moongladepress.com and when it's released June 1st on Amazon.com: https://t.co/267G0VaBiz?amp=1 My channel is YouTube.com/c/BenzoBrains Some other helpful resources are benzoreform.org benzoinfo.com benzo.org.uk/manual councilforsustainablehealing.org |
SHOW NOTES:
| About Jocelyn Pedersen: After experiencing a severe injury to her brain and body from prescription medications, Jocelyn co-founded the non-profit, Benzodiazepine Information Coalition. She is a speaker at CME's and continuing education courses for doctors and healthcare providers on the dangers of benzodiazepines and how to help patients safely withdraw. Jocelyn is also subject in the upcoming As Prescribed documentary film and the author of Seeds of Hope: a Journey through medication and madness toward meaning. When she's not busy managing her Benzo Brains YouTube channel or serving as an advisor to The Alliance for Benzodiazepine Best Practices and The Council for Sustainable Healing, you can find her rocking out to big band music and forcing her kids to watch MGM musicals with her. | |
| 0:06:00 | Jocelyn grew up in Pueblo, Colorado and her childhood was mixture of good and bad things, mental and physical abuse - but also grew up with a lot of spiritual support at Church of Jesus Christ of Later Day Saints and it stabilized her and taught her to overcome |
| 0:07:00 | Jocelyn got an academic scholarship to Brigham Young University so she moved to Utah and she loved college and graduated with a BS (Bachelor of Science) in childhood educations - college was a way to escape and re-start her life |
| 0:08:00 | Jocelyn got married and they moved to North Carolina and they had their first baby, but he passed away, so they decided to move closer to family for support and moved to Utah |
| 0:09:00 | Jocelyn started teaching at a local school for 2 years until she got pregnant again - she writes about her experience in her memoir that will be released in June: "Seeds of Hope: A Journey through medication and madness toward meaning" -- a couple of years later she had another baby, a girl to go with a boy |
| 0:10:00 | Jocelyn's father was a chiropractor so she grew up with a healthy distrust of allo medicine - but her story really starts when Jocelyn sought out a sleeping pill from her doctor - her baby daughter was in the hospital with meningitis, and then her toddler son was admitted to the hospital twice, so Jocelyn was not getting enough sleep - the economy was bad at the time, her husband was out of work |
| 0:11:00 | The doctor prescribed Ambien and assured Jocelyn it wouldn't pass through her breast milk to her baby - Jocelyn doesn't like taking medications, but thought she'd take it temporarily to get back into her sleep cycle |
| 0:12:00 | But within a couple of days, Jocelyn could tell her baby daughter was being affected by the Ambien - after 5 or 6 days Jocelyn stopped the Ambien and that's when things fell apart and her insomnia got much worse, she had ringing in her ears, running to the bathroom all the time, couldn't eat, losing weight, couldn't read a book, watch tv, and suddenly also had pain and couldn't even go for a walk |
| 0:13:00 | Jocelyn had a bunch of tests done but they all came back normal, so no explanation, except being told 'you have post partum depression', or 'you're having a nervous breakdwon', or 'you have anxiety' - but Jocelyn knew about depression from the death of her first baby, and this wasn't that |
| 0:14:00 | After about 4 months of literally lying on the floor with her baby and neighbours coming by to help - Jocelyn had been a high energy person: running, yoga, working out - but then she started to get suicidal thoughts |
| 0:15:00 | Jocelyn was told by the doctor she had major depressive disorder and an anxiety disorder and was given Effexor and Ativan - the first day she took the meds she slept well for the first time in 4 months - only later would Jocelyn realize that Ativan is practically the same as Ambien |
| 0:16:00 | So the Ativan stabilized the injury from the Ambien - originally Jocelyn was only to take the Ativan for a brief period, but the doctor increased the dose to 2 mg - 'it was like magic', Jocelyn felt better, like her old self, except for the pain, which was diagnosed as Fibromyalgia, and she was given Cymbalta for the pain - so for the most port Jocelyn was able to lead a normal life, she was a believer that she must have needed the meds |
| 0:17:00 | Jocelyn had studied and learned a lot about natural medicine and didn't like the idea of continuing to take Cymbalta, and it put weight on her |
| 0:18:00 | But the doctor would say, 'don't stop the Cymbalta until you've stopped the Ativan, now Lorazepam - but every time she tried to cut down, her symptoms would get worse, she couldn't sleep - so she stayed on them for another 3 years - but eventually tried to wean off again - she did stop progesterone cold turkey and got really sick |
| 0:19:00 | Her blood pressure sky rocketed, she gained a lot of weight, and falling asleep in the middle of the day - so she cold turkeyed it and the first time she experienced full on crazy, shaking all the time, and couldn't function |
| 0:20:00 | Jocelyn realized later the Cymbalta had really messed with her blood sugar and that's why she had put on so much weight - Jocelyn successfully weaned of the Cymbalta, but was still taking Lorazepam at night, but she and her husband wanted to have another baby but the literature said that Lorazepam could cause birth defects - they decided to go ahead and try to have another baby and that Jocelyn would try to taper off the Lorazepam |
| 0:21:00 | But Jocelyn later learned it doesn't really cause birth defects, but can cause of miscarriages if stopped to fast - Jocelyn did get pregnant and started to taper by 1/8th |
| 0:22:00 | Just cutting an 1/8th of a mg caused intense disabling symptoms: couldn't shower, read, watch tv, losing weight, and anxiety of a whole other dimension |
| 0:23:00 | It was torture, and then she had to cut the dose again, and then again - by the time Jocelyn got to half way she was ready to give up and kill herself because she couldn't handle the unending torture - luckily her husband started researching online - because Jocelyn couldn't - and found BenzoBuddies.org and Benzo.org.uk and he found the Ashton Manual, which a lot of people use to withdraw |
| 0:24:00 | They realized that Jocelyn wasn't crazy and that a lot of people were having the same experiences - and Jocelyn was probably tapering too fast - Ativan has a half life, so Jocelyn would experience sudden symptom onsets daily - so she switched to a longer lasting benzo to complete her taper |
| 0:25:00 | At the time, Jocelyn was too sick to go to the doctor - the next time she saw a doctor was at the ER when she thought she was having a miscarriage - they brought the Ashton Manual and requested Valium to stabilize Jocelyn, the doctor was resistant but finally agreed |
| 0:26:00 | The Valium provided some relief, but it was still hell and she didn't feel like she was going to take her own life - her family has seen Jocelyn struggle with Ambien withdrawal a few years before, and hearing the testimonials of others, helped them all to understand |
| 0:27:00 | Jocelyn had been drug injured with Ambien, but misdiagnosed with anxiety and depression - Jocelyn's doctor, a friend of the family, did not recognize withdrawal symptoms of Ambien |
| 0:28:00 | Jocelyn did have a miscarriage, which she is thankful for in some ways as she wasn't well enough to take care of a newborn at the time - Jocelyn continued to taper |
| 0:29:00 | Jocelyn tried various versions of tapering before discovering water titration, which she shows how to do on her YouTube channel - she had learned that in Facebook support groups - Jocelyn did reach out to mainstream medicine, she has a chapter in her book called 'Physician Heal Thyself' - all the doctors thought they knew about withdrawal, but none of them did, and none of them had read the Ashton Manual |
| 0:30:00 | One doctor told Jocelyn that she just couldn't handle being a Mom and should take some Prozac - the only doctor who was reasonable was Jocelyn's family doctor, but all he was willing to do was to prescribe the Valium |
| 0:31:00 | But when he was gone and Jocelyn had to deal with one of the other providers at his clinic, she was given the 3rd degree every time - it took Jocelyn about 18 months to taper off 13 mg dose of Valium - the newer benzos are many multiples more powerful then Valium, yet its the the Valium doctors are hesitant to prescribe |
| 0:32:00 | Jocelyn had to learn to accept where she was during the taper, that she had a brain injury - she also had support with the kids during the day, when her son started back to school... |
| 0:33:00 | she reached out to people in her church community and a different family came over each day to help her - Jocelyn does not know how she could have managed without community support because her husband was working 2 jobs |
| 0:34:00 | The big turning point for Jocelyn was finding a functional medicine doctor, a ND (Naturopathic Doctor) - she found one in her area and helped her with her benzo belly - he did tests that allopathic doctors don't do |
| 0:35:00 | He was able to pinpoint deficiencies - she started on a high protein diet because she was hypoglecemic - after about a week on his protocol Jocelyn started improving a lot, sleeping well |
| 0:36:00 | Then her son was prescribed an antibiotic and it injured him - it was like deja vu: once again no doctor is believing them - turns out her son developed an autoimmune illness and is allergic to everything - he was a normal boy, running and playing, then suddenly he's in a wheelchair and crying out in pain every few minutes |
| 0:37:00 | The paedeatric allergist said her son always had the autoimmune illness, refused to believe it was caused by an antibiotic - but the functional medicine doctor was able to help cut down on the inflammation and allergic reactions, but they are still figuring it out - he has a lot of trauma from that, and from a Mom who was disabled twice in his life - Jocelyn had to learn not to give power to health providers, and to heal herself |
| 0:38:00 | Yoga, meditation, diet, stem cell therapy for trigeminal pain -- nerve pain in her face -- it literally hurt to breath - the stem cell was very helpful, but she has to go back every 4 months or so as the pain comes back |
| 0:39:00 | How can someone help you if they don't even believe you? -- some doctors are open, but plenty are just closed minded |
| 0:40:00 | During her taper, Jocelyn was asked to be a moderator of a Facebook group, so she helped people find resources - then another friend asked her start another group to help people apply for disability or medical malpractice suits or correct medical records - Jocelyn realized they needed some 'weight' behind them, as they were 'just' sick patients, so Jocelyn suggested they start a non-profit |
| 0:41:00 | The Benzodiazepine Information Coalition - but then her son got sick and she had to step back to care for and home school him - but it was toward the end of her taper that she made her first Youtube video, just for her friends in the support group - and it got lots of shares - then when she was frustrated with doctors she made another video and that was picked up by Mad in America, and things just picked up |
| 0:42:00 | Her videos help people with brain injuries and their families get the support then needed - her Youtube channel is Benzo Brains - Jocelyn is doing really well. now, living life fully - she does get more stressed out physically |
| 0:43:00 | Her body is kind of delicate now, but she is really happy, with peace and joy - but if she doesn't get enough sleep or eat write, a dark blanket descends on her brain, but she knows it is only temporary - but it is painful having a son who is still suffering, but she's not coming from a place of fear |
| 0:44:00 | Jocelyn believes the suicidal thoughts that came from withdrawal are product of the medications causing the repeated thought 'kill yourself, kill yourself, kill yourself' |
| 0:45:00 | Most of the people dealing with withdrawal are good people, just doing what your doctor told you - Jocelyn was asked to speak in 2017 at the benzodaizipine medical symposium for doctors |
| 0:46:00 | Jocelyn met a lot of wonderful people, including a woman, a benzo survivor, who asked Jocelyn to write a book - initially Jocelyn declined but then thought it could be a good tool to get the message out there |
| 0:47:00 | It took a while to write while taking care of kids and her own healing journey, but it will be published June 1st - Seeds of Hope: A journey through madness, medication and meaning - she wants to give people hope that are in the same situation |
| 0:48:00 | The publisher approached Jocelyn to write the book - some of her benzo awareness efforts have been black balled by google or facebook or youtube |
| 0:49:00 | Obviously there are forces out there they do not want this information in the public spere, but Jocelyn believes there also people out there that know something is wrong - benzo perscriptions have increased 10 fold over the last decade - doctors are just substituting benzos for opiates - so big pharma's profits increased by 10 fold - since COVID, anxiety meds prescriptions have increased 34% |
| 0:50:00 | Alliance of Benzo Best Practices is a group of doctors who understand, and researchers who want to do research for the FDA to change recommendations, and to re-educate doctors on these drugs |
| 0:51:00 | The stuff pharma puts out, does not warn people about what these drugs can do |
| Connect with Jocelyn Pedersen: | |
| People can pre-order Seeds of Hope: A Journey Through Medication and Madness Toward Meaning through moongladepress.com and when it's released June 1st on Amazon.com: https://t.co/267G0VaBiz?amp=1 My channel is YouTube.com/c/BenzoBrains Some other helpful resources are benzoreform.org benzoinfo.com benzo.org.uk/manual councilforsustainablehealing.org |
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I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
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Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
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Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Monday May 11, 2020
Monday May 11, 2020
Imagine back to when you had a bad flu. Remember the nausea, head spins, pain and soreness, vomiting and diarrhea, and crushing fatigue? Remember how the worst lasted for a few days? Now imagine having that flu for a few weeks. Or a few months. Or like Jeffery Smith, for a few decades.
Now think of the millions of COVID patients. A good number of the survivors are not fully recovering from this ‘flu’ bug. They remain sick for weeks. Soon they will have been sick for months. And if they are unlucky like Jeffery, they may be permanently sick and disabled, and the health care system will effectively abandon them.
Most doctors didn’t take Jeff’s ongoing flu symptoms seriously, dismissing them and subtextually blaming Jeff for being emotionally weak, or not trying hard enough, or not really wanting to be healthy. You know, gaslighting. So when Jeff started to have bowel symptoms, he didn’t tell his doctor. Who needs to be invalidated and gaslighted?
But it turned out Jeff had a tumour and needed surgery and suddenly the health care he received was empathic, prompt and validating. A stark contrast to the years of dismissal and gaslighting of his flu symptoms.
As Jeff explains, the tumour for which he received exemplary care only impacted his quality of life a fraction compared to how the never ending flu shattered his future. And as the COVID deaths and infections continue to rise, the people who do not recover may also experience disbelieving doctors, and a health care system that doesn’t care.
SHOW NOTES:
| 0:06:00 | Jeff grew up in a small hockey town in Campbellford in Canada - and Campbellford in the 70s was more like the 50s, it was an alternate universe |
| 0:07:00 | Jeff's childhood was traumatic - he was gay living in a small town wherebody played sports or worked on the farm, where Jeff liked to watch old movies, like with Lauren Bacall, and draw their dresses - so school wasn't a safe place, and home wasn't safe because his mother had emotional issues and had a traumatic childhood, so Jeff didn't feel safe at school or home |
| 0:08:00 | Jeff didn't feel safe until he moved to Toronto for college - he was not liked by other kids because he was 'other' - but when he came to college he was suddenly popular even though he was the same person, so that was confusing and fascinating - Jeff always thought he'd not live long |
| 0:09:00 | Jeff was very sick as a child - 9 convulsions before he was 5 - doctors found Jeff had really bad allergies - they put an air conditioner in his bedroom, and Jeff felt better in the room so spent much of his time there, especially in the summer - if he went outside the heat would cause convulsions - so as a boy, Jeff got in his head he wouldn't live long |
| 0:10:00 | In grade 9 Jeff missed 3 months of school due to the flu - he started allergy shots when he was 5 years old - those helped, and the convulsions stopped |
| 0:11:00 | But in grade 9, the non-stop flu for 3 months came with fever, swollen glands, etc - when Jeff got over that and everything was okay until he got mononucleosis at age 19, during the summer |
| 0:12:00 | For 2 months Jeff couldn't really lift his head off the pillow - he had to pee in a pail beside him - it lasted 2 years of fevers, night chills - it was 1985 and the AIDS pandemic was just emerging and Jeff thought he must have AIDS, even though he'd never had sex |
| 0:13:00 | So doctors could see by Jeff's symptoms including swollen glands, that he was sick, they just didn't know why - it was rought to transition during the mono to move from home to Toronto and go to college |
| 0:14:00 | Jeff would go to school and crawl into bed after - so it was challenging, but he loved the subjects and the positive attention and learned some of his own value - Jeff remembers wondering if he had irritable bowel syndrome (IBS) because of the diarrhea, easily 10 times a day, every day for 2 years - so that meant leaving class, getting up in the middle of lunch, etc - yet trying to appear healthy and normal |
| 0:15:00 | But life was really good - trying to find a career, had lots of friends - Jeff's health was okay during this period, from 21 to 30 with okay-ish, but some bad periods with bad allergies - including missing 3 weeks one time |
| 0:16:00 | One time Jeff bought a plant, but didn't realize for weeks that that was what was making him sick - but Jeff was told my different doctors he had 'post viral malaise' - Jeff was working in a bank to earn a living |
| 0:17:00 | Then he met his partner, who would become his husband, and that's when his life really started - Jeff was 24 when they met, and Jeff was enjoying relatively good health - Jeff's allergies are anything in the environment, plants, trees, grass are the worse - he was on shots for 24 years and tested regularly |
| 0:18:00 | Jeff always scored the highest on allergy testing for grass, trees, mold, pets - Jeff lived on daily allergy pills for decades - the weather changes really affect Jeff too - so its really bad now, in the spring - it also affects his immune system |
| 0:19:00 | Jeff's immune system has been over worked since birth, so he's interested in how that realtes to mast cells - in Sept 1996 Jeff caught the flu, the regular bad flu |
| 0:20:00 | That flu has been with Jeff every day since Sept 1996 - Jeff says that if you think back to when you had the bad flu and remember how you felt - head spinning when you were not laying down, having to hold onto things - chills in your body, pain, dizzy, fatigue - fatigue so bad that you wait 20 minutes to turn over - if people can remember those feelings, and that that lasted maybe 3 days |
| 0:21:00 | Take that to 3 weeks and nothing changing, nothing getting better - then try to imagine getting up, putting on clothes while you're sweating, holding onto the sink - getting yourself to the bus, streetcar, subway, but not having the energy to stand, and having to lean - trying to make it through the work day, but not meeting your obligations, cognitively or energy wise -- now extend that 3 weeks to 3 months and you're still not better and people at work are saying your performance is down |
| 0:22:00 | And your doctor at 6 months keeps saying post viral malaise - but you can barely work, cannot watch an hour tv show - but its been 23 fucking years at that level for Jeff, with full on flu - so that's the only way Jeff can describe what happened to him in Sept 1996 |
| 0:23:00 | Jeff has the same flu symptoms, some more severe, as 23 years ago - that is Jeff's reality - Jeff describes his symptoms as a constant orchestra |
| 0:24:00 | Jeff used to have good days and bad days, but now he has perhaps a few good hours each week, and the rest is bad |
| 0:25:00 | Jeff's had 3 GPs, plus lots of specialists -- but the GP at that time - 1996, pulled out a list that said 'Chronic Fatigue Syndrome' - Jeff did not have constant sore throats, but had all the other symptoms, but the doctor said that Jeff could not possibly have CFS if he did not have a sore throat |
| 0:26:00 | The doctor said Jeff had 'nerves' and some people just aren't as emotionally strong as others, and life is hard, and so what you need is a psychotherapist and a relaxation class |
| 0:27:00 | Jeff was so sick and desperate and grabbing at straws, so Jeff did therapy and relaxation classes - while they didn't help his physical health, they did help in other ways |
| 0:28:00 | But not one of them has moved his illness 1 per cent - Jeff's doctor retired, and his new GP took Jeff more seriously and sent Jeff for other testing - but there was always the overarching theory that the problem was Jeff: he was gay, overly sensitive |
| 0:29:00 | Jeff has learned through this health journey everyone wants to put you in a box - but if people had of paid attention to 'chronic fatigue syndrome' instead of calling it 'yuppie flu', he wouldn't have lost a quarter century of his life - Scott says that many people with ME (myalgic encephalomyelitis) have it develop from a flu that never went away |
| 0:30:00 | The COVID patients who do not recover are showing ME symptoms - however, it is less likely their symptoms will be dismissed with psychological bullshit because of the global onset - Jeff says from the SARS pandemic we learned that 17% of patients could not return to work at all, and 87% of not fully recovered |
| 0:31:00 | With milloins infected with COVID, without a doubt many more people will be sick with ME - COVID could be the best thing to happen to ME - there are already about 600,000 Canadians with ME |
| 0:32:00 | But there are many more people who are not diagnosed - Jeff remembers a woman from his childhood who was sick in bed for 30 years, and nobody knew why, but the narrative was that it was because she was a woman |
| 0:33:00 | Jeff feels for how this woman must have been so misunderstood for all those years - while therapy helped Jeff with his emotional life, it did nothing for his physical symptoms |
| 0:34:00 | Therapy does not stop Epstein Barr Virus from replicating in your body - even Jeff and his husband thought maybe Jeff was just really depressed but didn't know it - but every sign indicated jeff wasn't depressed - he enjoyed activities, his friends, he was optimistic - he was sick in bed and sad, sad because he was sick and in bed, not because he was sad |
| 0:35:00 | One of the elements of ME is bowel problems and IBS - in the late 2000s Jeff started to experience IBS symptoms again - but with ME, because it is multi-system, the habit is to attribute any symptom to ME, and to not tell you doctor because of the 'eye roll', as in 'here he is again' |
| 0:36:00 | Jeff got to the point where he was thinking, 'no one can help me, I don't want to be looked at as crazy, so he didn't mention it to his doctor - Jeff ignored the symptoms until he couldn't ignore them anymore - his doctor sent him for a colonscopy and they found something |
| 0:37:00 | Jeff was diagnosed with a rectal tumour and he had to have a bowel resection operation - basically they removed 95% of his rectum and he was on an ostomy bag for 6 months, but then had a 'reversal' operation and doesn't have the ostomy bag anymore - but the tumour only impacted about 20-30% as much as the ME |
| 0:38:00 | But as soon as he got that diagnosis, it was like he was in another world, another twilight zone, another life because he received help, understanding, empathy, support - it was strange compared to ME health care - Jeff really needed the reversal surgery because of the time and energy it takes to use the ostomy bag, clean, change while standing up |
| 0:39:00 | Jeff has POTS as well, so standing is a real challenge - he had a nurse for a while for the ostomy bag, but the real problem was the ME, and there was no help for that - Scott says there are 2 health systems: if you have cancer, or HIV, or a broken leg, you can usually get pretty good care - but if you have ME or something else they don't know about, you get pretty shitty care |
| 0:40:00 | When they don't have a pill or an operation, they says its in your head and they think they've cured you, they just don't want to tell somebody "I don't know' - if somebody had of said that to Jeff, his life would have changed - he wouldn't have spent 25 years beating himself up as not being good enough, not trying hard enough - Scott asks Jeff when he knew he was being gaslighted? |
| 0:41:00 | Jeff says when he saw the 'chronic fatigue syndrome' list of symptoms and he had them all except one, he figured he had it and that was in the back of his mind, but he always responded to whatever the doctors said was the problem - but the epiphany was around 2015-16 when Jeff went to Stanford chronic fatigue syndrome clinic (aka ME) in California - so 20 years after the flu started |
| 0:42:00 | When Jeff got to Stanford he first saw a nurse practitioner who had reviewed Jeff's file, the first thing she said was 'I apologize for all the medical abuse you've received from the medical community' |
| 0:43:00 | Jeff had 20 years of grief that he never expressed, because he was never told medicine made a mistake - Jeff hugged her because he didn't know what else to do - it changed his life hearing that - Jeff paid for an expensive panel of blood work - the results showed Epstain Barr Virus higher than anyone they'd ever seen at the clinic |
| 0:44:00 | For the first time Jeff forgave himself for not trying hard enough - all those years of struggling to work, only to be remprimanded for not doing well enough - Jeff took a moment to recognize that he did all that even though he was so fucking sick, and sicker today because of it - getting the blood work back showing the infections was validating |
| 0:45:00 | The layman's interpretation of what is happening, is that the Epstein Barr Virus (EBV) is replicating every 24 hours, as its been doing for 23 years - the diagnosis all made sense - the nurse started to cry too |
| 0:46:00 | Because Jeff was steadily getting worse - and this is something often not talked about, it is the people who are too sick to have a voice, literally too ill to speak |
| 0:47:00 | Jeff has periods where talking is so draining, uses so much energy - Jeff did not leave his bed for the previous 4 days, to rest up and sit up for this interview - but Jeff says he knows of so many people who are completely bed bound and cannot communicate, even on the internet - they are still there and breathing, but they don't exist otherwise |
| 0:48:00 | Severe ME has been described as like the last days of dying of AIDS or cancer - in and out of consciousness, speak very little, just like ME |
| 0:49:00 | Jeff's friend read about the Stanford chronic fatigue syndrome clinic and told him about it - Jeff took the article to his doctor, and the doctor read the article, looked up at Jeff and said 'You have myalgic encephalomyelitis' |
| 0:50:00 | At the same time, Jeff was trying to get an appointment at the Environmental Health Clinic at a Toronto hospital - it took 3 months for Jeff's Stanford appointment, but he had to wait 19 months to get the Environmental Health Clinic - the experiences were not similar |
| 0:51:00 | Jeff had to forgive himself and the medical community - like MS was called hysterical paralysis before the MRI - and we know that how people with ME are treated by the health care system causes them to kill themselves - there is no treatment, no empathy, no hope |
| 0:52:00 | And it was at that time that Jeff started advocacy, he needed to do something, in his own way with own limited abilities - Stanford started Jeff on a mitochondrial cocktail, LDN (low dose naltrexone) and valcyclovir, an antiviral |
| 0:53:00 | Jeff was only on LDN for 2 months because he was feeling sicker - it was another 3 months be bedbound because of it |
| 0:54:00 | Jeff was on the valcyclovir for 9 months, but it took away from his health, not helped - Stanford said that the chances of improving decrease the longer someone has been ill - it cost a lot for Jeff to get treatment: flights and hotels, $1200 for the appointment, another $5000 for the testing - Jeff had to cash in some of his RSPs to pay for it |
| 0:55:00 | What the Toront Enironmental Health Clinic was helpful with, was diagnosing POTS - post orthostatic tachycardia syndrome - with a tilt table test |
| 0:56:00 | For Jeff, his heart rate goes up over 30 beats a minute when he goes from laying to standing, this is why he's dizzy when he vertical - but there no real treatment for that either |
| 0:57:00 | POTS falls under cardiology, and the big thing for POTS in cardiology is exercise, but exercise makes people with ME much sicker - the cardiologist Jeff saw was part of a national board, but they excluded people with POTS and ME, because people with ME can't exercise |
| 0:58:00 | So medically marginalized again - Scott says that people who are fairly healthy wouldn't really notice a 5% improvement in their health, but if someone is sick with ME and only has 5 or 10% functioning or quality of life, a 5% improvement is huge |
| 0:59:00 | Jeff has maybe one hour a month when he doesn't feel really sick |
| 1:00:00 | Jeff feels like his body is stuck in the 'sick' position - and that relates to researcher Robert Phair's theory that people with ME's bodies are stuck in a metabolic trap, a sickness trap |
| 1:01:00 | Jeff describes his energy as 12 cents of gas a day - going to the bathroom uses 6 cents - PEM, or post exertional malaise, is the biggest issue with ME |
| 1:02:00 | For people with ME, exercise, even walking to the end of the driveway, or lifting groceries, is never going to be good, it puts energy into a deficit, and that causes PEM, an exacerbation of ME symptoms - cognitve and emotional 'effort' can also cause PEM |
| 1:03:00 | Jeff has resigned himself that he will never get better - but he thinks understanding of ME will come, and his purpose is to push that forward so that others don't have to lose decades of their lives - Jeff hopes he doesn't get so sick that he needs to be tube fed |
| 1:04:00 | Jeff's fascinated about the responses on Facebook when he posts about ME - he's educating a lot of people - having someone at the Canadian Institute for Health Research understand ME can change the world |
| 1:05:00 | Jeff has been sitting up for an hour, so the usual crushing fatigue is worse, the room is spinning - this is a lot of effort for Jeff, the equivalent of a 50 mile jog for someone healthy |
| 1:06:00 | Scott says he used to think people who did triathlons were so tough, but they have nothing on the people who live with ME - Jeff says the sickest people with ME are the toughest people you'll ever / never meet - and they are trying to help others, even when they are so sick they can't speak - Scott says he's healthier than other people with ME, maybe because of HIV meds |
| 1:07:00 | Jeff says that others with ME, who don't have HIV, can't get access to the meds because their doctors will lose their license |
Be a podcast patron
Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.
Premium Patrons get access to video versions of podcasts for $5 / month.
Be my Guest
I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
Need a Counsellor?
Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
**For my health and life balance, I limit my number of counseling clients.**
Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Monday May 04, 2020
Monday May 04, 2020
A quick recap - in part 1 of the interview, Larry was having chest pain and his wife Jane drove him to the hospital, where he was diagnosed with a heart attack and sent by air ambulance to another hospital, a Catholic hospital, where they were met with hostility and a chaplain determined to keep Jane and her son from seeing Larry.
At the end of part 1, Jane was blocking the Cathlolic hospital’s chaplain from coming into a meeting with the doctor about Larry’s medical care and condition, and things are about to get even stranger….and more frightening...
SHOW NOTES:
| 0:04:00 | They got to the doctor's office, and again Jane asks the chaplain to go away - she put her arm across the door and said I don't want you in here, you have to leave now - but he came in sat down - then a doctor came in and 1st thing he says is 'I don't want to be here, I am tired, I want to be at home, I don't want to be here' - the doctor says 'I'm supposed to show you this video, but I can't get it to work - I'm tired and want to go home - do you really need to see it - do you have any questions?' - Jane says 'no', and the doctor leaves |
| 0:05:00 | Jane sees 2 women wheeling Larry - but the women looked mean and disgusted, and Jane stepped back - the chaplain said he'd escort Jane and her son back to the waiting room |
| 0:06:00 | the chaplain said Larry would be free for visitors in about 15 minutes, and that the chaplain would be right back - 2 hours went by and no word from any one - Jane was shocked by the whole situation |
| 0:07:00 | Jane was told that she would have to go because visiting hours were over - she found out later their policy is one person can stay overnight |
| 0:08:00 | Larry was left naked from the waist down until the next nurse came on shift - Larry woke periodically to feel a touch on his genitals, or the sound of laughter |
| 0:09:00 | When the next nurse, a male nurse, came on shift, Larry was covered after that - according to records, about 6am with the female nurse reported that Larry woke up nauseasted and vomited on himself |
| 0:10:00 | the female nurse cleaned him up, but left him naked to go get supplies - the records show they knew the meds they gave him would make him vomit, so they prescribed an anti-nausea med, but the nurse never gave it to Larry - so he could've choked to death on his vomit |
| 0:11:00 | On Sunday Larry was still kind of out of it - the doctor had come in the morning to tell Larry about the procedure |
| 0:12:00 | Larry thought he must have been in bad shape if they had to do that procedure - when Larry and Jane talked, they realized neither of them gave permission for the procedure - Larry wanted to get out of the hospital as fast as possible |
| 0:13:00 | When Larry got home he had a shower, but he didn't want to talk to Jane about the experience - he was traumatized - he's had nightmares ever since - he can't believe what they did (cries) - it is beyond unprofessional, they intended to harm Larry |
| 0:14:00 | It wasn't until they got the hospital records that they started to piece together why Larry was treated the way he was - the first hospital did not record the pain killer they gave him, or the reactions Larry told them he had to pain meds - they also wrote down that Larry had a husband |
| 0:15:00 | So hospital #1 recorded Larry as a gay married man, and they sent him to a religious hospital that has anti-gay policy - the hospital is in a lawsuit because they refuse to perform certain services to LGBTQ people - Larry and Jane think hospital #1 was punishing Larry because he didn't want to go to their affiliate teaching hospital |
| 0:16:00 | Jane's confrontation with the nurse, was because the nurse was expecting a gay man - Larry and Jane also suspect the hospital thought their son was Larry's husband, always addressing their son, not Jane |
| 0:17:00 | At cardiac rehab, Larry told them about his abnormal responses to pain meds - cardiac rehab noted it, then crossed it out - CMS (Centre for Medical Services) told Jane doctors can do any procedure or give any drug they want, even if you have declined it |
| 0:18:00 | The ER doctor lied to them - he knew what he was doing - the 2nd hospital didn't note any of the meds Larry had already been given - they wanted to make it look like Larry had agreed to the other pain meds in their records |
| 0:19:00 | They had the chaplain gaurd Jane and her son, because the hospital had called in the cath lab team special, they were going to give Larry the prodecure, it didn't matter if he didn't want it - because the nurse thought Larry was gay, she was gaining points with hospital staff who witnessed her torture Larry - she's a predator and should not be working with any one |
| 0:20:00 | Larry doesn not have modesty with health care issues, this is a nurse who used her power and authority while Larry was drugged and wasn't able to physically or verbally stop her - Versad is a date rape drug and erases the memory - that's why the hospital thought Larry wouldn't remember anything |
| 0:21:00 | In Europe, they don't use drugs 75% of the time for this procedure, but the US to make the patients submissive and without memory - so #1 the air ambulance staff gave Larry meds without his permission, and #2 the lead doctor did not ensure a true consent was attained from Larry for the procedure |
| 0:22:00 | Now Larry has to live with the consequences of the procedure for the rest of his life - Larry now has to take medications to prevent the implancted stents from killing him, and they cause other complications: liver failure, diabetes, etc - Larry was also exposed to more radiation than protocol - Larry is a cancer survivor, so he would never have consented to that much radiation exposure |
| 0:23:00 | Jane can't believe it happened, and nobody can tell them why |
| 0:24:00 | So homophobia intersects with profiteering while denying informed consent, lying about informed consent, coupled with mulitple medical errors - in Larry's medical records it says 'his pregnancy was uneventful, and the baby is doing fine' - another section says Larry had a 6 hour procedure - another section of his records says the nurse reported she was at the 1st hospital when the put the IVs in, and had informed Jane about everything |
| 0:25:00 | Lie after lie after lie, mistake after mistake - that's the bad thing about electronic health records, the staff just go through and check boxes |
| 0:26:00 | All they do is 'click click click' - but Larry's records are so bad, they are practically useless in trying to figure out what they actually did or did not do - they say to avoid stress after a heart attack, but then the hospital loads all this unnecessary stress, like they wanted him to die because they thought he was gay |
| 0:27:00 | Jane couldn't imagine being a gay person and going for treatment at a Catholic hospital - Jane says she would crawl away rather than step foot in one of those hospitals because they use their religion to cause harm - in their hiring practices, the hospital says they have the right to supercede state and federal laws |
| 0:28:00 | Larry and Jane have not gone for trauma counselling because they don't trust them, but they recognize they both have PTSD - Jane feels guilty for not protecting Larry |
| 0:29:00 | Jane's guilt is motivating for her advocacy - but they can't get an attorney to take their case because there is no 'evidence' in the medical records of harm to Larry |
| 0:30:00 | Each hospital shold abide by the federal patient bill of rights, these were all broken in Larry's case - there could be a class action lawsuit - but attorney's won't deal with this hospital, because it is particularly vicious and aggressive |
| 0:31:00 | When Jane complained, the hospital wrote back 'if you don't like it, go somewhere else' - the doctor wrote 'if I've done something I'm sorry' - Jane asks 'what do you mean 'if'?' - you did a procedure without consent |
| 0:32:00 | The records said Larry was diabetic, but he's not - for months he got calls from companies trying to sell him diabetic supplies - his health insurer even told him to go for his diabetes check up - but he can't get them to correct his medical records |
| 0:33:00 | The doctor did a glucose test, but it was not fasting, it was during Larry's heart attack - any newbie doctor would know a glucose test at that time is useless and misleading |
| 0:34:00 | In the US insurance company gets paid for chronically ill patients, so with a diabetes label, they would have made more money - the hospital charged for 2 rooms on 1 day - CMS and the insurer didn't want to deal with the fraud, so for 6 months Jane persisted until the hospital removed the extra billing - the insurance company told Jane she caused bigger problems because they had to re-submit the bill |
| 0:35:00 | They didn't care that $3000 was stolen from them - fraud is alive and well in hospitals, they know how much they can get away with, and they do - they gave Larry 1 medication twice, 15 minutes apart, but the 2nd dose cost $25 more - they are not health care centers, they are profit making centers |
| 0:36:00 | So at least in the US, there is no such thing as patient rights - Jane has a book called "Operating Room Confidential" by Dr Paul Whang, an anaethesiologist - he writes they like to have fun with male patients - the medication they give causes penises to move and become erect - they like to bring in new nurses and say 'look what you do to him' |
| 0:37:00 | They use patients for sexual entertainment - they have no respect for patient dignity - once you've been drugged, you have no control over what they do to you |
| 0:38:00 | Larry will never go to the ER again - he had a medical encounter recently for an EKG, the medical assistant said 'strip from the waist up' - 'strip' is a word that should never be used in a medical setting, it is a sexual word - Larry froze (a PTSD symptom) and the medical assistant started to take off his shirt, but Jane yelled and stopped her |
| 0:39:00 | Jane asked the worker if Larry's record had note that he's the victim of medical sexual abuse, the medical assistant said 'no' -- so again, if the hospital doesn't want something in the patients record, it won't put it in - Jane told the worker the note was also supposed to say that Larry should receive trauma informed care - the medical assistant knew nothing of the concept |
| 0:40:00 | How men are treated in health care is very different from women - for example, when a man goes for a prostate exam, he'll be told to drop your pants and bend over the table, even if there is a female medical assistant - but how many women for a gynecological exam are told to 'drop your pants' |
| 0:41:00 | Health care is so different for men and women, and Jane is determined to change it and has become an activist |
| 0:42:00 | Jane thinks nobody should have to undergo a procedure without their consent, it is criminal, and somebody should go to jail for it, somebody should lose their license |
| 0:43:00 | If versad was given to a woman at a party, and she was undressed, and a bunch of people called in to look at and touch her, they would be arrested - but why do hospitals get away with it? |
| 0:44:00 | The consent form at the hospital says the doctor has the right to do anything the doctor feels you need - even if you've had a verbal conversation about your wishes - as soon as you sign that form, it negates your conversation |
| 0:45:00 | If Larry had of been asked to sign the consent form, he would have - as he has always done - cross out 'students, sales reps, observors' to be allowed in during a procedure - CMS said the procedure had already started before the form was completed by the medical staff |
| 0:46:00 | Larry is doing okay - not getting as much work done as before - has shortness of breath, could be side effects of meds of the stents - tired, hard to focus, that never happened before - a PTSD symptom |
| 0:47:00 | Larry gets very quiet, while Jane gets very mad - we all have different ways of dealing with trauma - Larry has nightmares - Saturday nights are hell for them, they can't see a clock |
| 0:48:00 | The medical trauma and PTSD prevents Larry and Jane from seeking trauma treatment, but cause they can't trust people in the health care field - they are considering moving to another country |
| 0:49:00 | With the COVID pandemic, all doctors are heroes - but Larry's doctor's were not heroes - how do you tell which ones are heroes? |
| 0:50:00 | There are a lot more people out there with similar experiences that we never hear about, they just accept that that is the way it is - they never examine their medical records or they would see - yet those records are the gospel to CMS or the State Attorney General or whomever should be enforcing and taking care of patients rights |
| 0:51:00 | In Indiana, the only way they can do a procedure without consent, is if the patient is unconscious and the next of kin cannot be found - but Larry was conscious and Jane was at the hospital |
| 0:52:00 | We cannot let them continue to do this, we must stand up - its our rights, its our bodies - doctors are our paid advisors, to carry out our wishes, like a server at a fast food restaurant - doctors need to learn that |
Be a podcast patron
Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.
Premium Patrons get access to video versions of podcasts for $5 / month.
Be my Guest
I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
Need a Counsellor?
Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
**For my health and life balance, I limit my number of counseling clients.**
Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
Monday Apr 27, 2020
Monday Apr 27, 2020
When Larry was doubled over with chest pain, his wife Jane drove him to the nearest ER where he was diagnosed with a heart attack.
The health care Larry received over the next few hours was motivated by profit and punishment. At each turn, hospitals sought to maximize their profits, including fraud and falsified medical records, on the treatment Larry received.
The hospital staff made choices, always the most expensive choice - like sending Larry to another hospital by air ambulance instead of road ambulance, or choosing high cost, highly invasive medical procedures over the least costly, least invasive medication Larry actually requested. In spite of Larry repeatedly stating he only wanted a minimum dose of pain killers, the hospital injected him with multiple pain killers, rendering him incapable of making informed consent.
Larry was air transported to the local Cathlolic hospital. While much of this was going on, Jane and their son were intentionally and overtly being kept away from Larry by the hospital chaplain -- and while the chaplain was receiving updates on Larry’s condition, he wasn’t sharing the info with Jane and their son. Hours went by and during that time, Jane repeatedly asked the chaplain to leave so she and her son could have some privacy and speak freely. He refused each time. Jane couldn’t understand why the staff were being so openly hostile toward her and her son.
The next day, Larry couldn’t understand why the staff had ignored his statement to be treated with medication, and instead implanted several costly devices in his body. Devices that cause side effects and will probably contribute to his death.
But when Larry and Jane got a hold of Larry’s medical records, they began to understand that his hospital care and treatment was not based on his medical need, it was based on profit and religious punishment. But the punishment was actually started by the first hospital as Larry and Jane share in the medical experience with multiple layers: profiteering, medical errors, negligence, religious bigotry, fraud, homophobia, deceit and denial.
If you thought hospitals were benevolent and their staff empathetic, you will think differently when you hear all that happened to Larry and Jane in part 1 of my interview….
SHOW NOTES:
| 0:06:00 | Larry (a pseudonym, as is Jane's name) grew up in Indiana - his father was a contractor in the construction industry with one brother, and a half brother and sister - health child with normal measles, mumps, poison ivy |
| 0:07:00 | Jane grew up in central Indiana - her father worked for the a big pharmaceutical company - when her parents got divorced, life was hell because they fought constantly even though they were divorced - Jane met Larry through work, she worked for the State and Larry was doing a contract computer job |
| 0:08:00 | They've been married since 1987 - they have a son who is a teacher, and a daughter who is in business with Jane, doing specialty sewing -- On August 11, 2018, a Saturday night about 7pm |
| 0:09:00 | Jane found Larry on the floor with chest pains and difficulty breathing - pain level about 7 out of 10 -- Jeane said they had to go to the hospital, but Larry wasn't keen |
| 0:10:00 | Larry has always been healthy, so not in the habit of seeking medical attention - Larry thought maybe it was indigestion from dinner |
| 0:11:00 | Larry wasn't having pain down his arm or irregular heart beat, his blood pressure was fine |
| 0:12:00 | The pain was for about 8 - 10 minutes before Jane found him |
| 0:13:00 | They live in the country so drove the local hospital - when Larry got to the ER his pain was 6 / 10 |
| 0:14:00 | They admitted him right away - first thing Larry did was tell them he was very sensitive to pain killers and didn't want any fentynal, versad or anything like that - the doctor if he would accept a small amount of morphine, so Larry agreed to that - but he told the doctor that in the past pain meds had messed with his blood pressure |
| 0:15:00 | Pain meds raise his blood pressure, cause erratic breathing, cause nausea - after the morphine, Larry's pain was 1 / 10, a dull ache |
| 0:16:00 | They did diagnosis a heart attack, but said they were not equipped and that Larry would have to go to another hospital - Larry decided to go to the hospital that had a heart center |
| 0:17:00 | Larry was told he would have 3 options for treatment: open heart surgery -- or angioplasty - or medicines to bust the clots -- Larry said he'd prefer to try the drugs first - the doctor said Larry could discuss with the doctors at the heart hospital - Larry said that Jane needed to be there for major decisions |
| 0:18:00 | The morphine made Larry a little slow on thinking - he would find out later they had given him 4mg - the doctor said he would order transportation to the other hospital, he'd call both an ambulance and helicopter and whoever arrived first would take Larry - but according to the hospital records, they never called an ambulanc, even though the EMTs were just down the street |
| 0:19:00 | Jane checked with the EMTs later, and they were available and could have taken Larry - but Larry believes the hospital chose the air ambulance because it belongs to the hospital and is more expensive |
| 0:20:00 | It took almost an hour before the air ambulance arrived with pilot and 2 medical workers - they asked Larry is pain level, he said 'one' - he found out later they wrote down 'eight' |
| 0:21:00 | But the ER doc had noted Larry's pain as 'one' after the morphine |
| 0:22:00 | They loaded Larry into the helicopter - Jane and their son started to drive to the other hospital - in the helicopter, Larry wore sound defeaning ear protectors - the paramedics did not speak to him, but noted in their records his pain was 8 / 10 |
| 0:23:00 | In their records it shows they gave Larry, without his knowledge or consent, a 100 mcg of fentanyl - Larry was out of it, he didn't know what was happening - he thought he must be dying, he felt like he was above his body - this continued until late Sunday - he was incoherent and can only remeber bits and pieces - but basically like a zombie |
| 0:24:00 | Larry does remember when the helicopter landed, there was no one to meet them - the paramedics waved down an employee in the parking lot, who let them in a side door - they wandered around the hospital looking for the 'cath lab' |
| 0:25:00 | When they got to the cath lab, with the pilot observing, they put Larry on a steel table - they had already given him to IV ports, one in each arm - the female nurses in the room didn't speak to Larry, but started stripping his clothes off |
| 0:26:00 | Larry would find out later they dumped his clothes in a red haz (hazardous material) mat bag - Larry was out of it, his arms felt like lead - fentynal also paralyzes and makes patients compliant |
| 0:27:00 | Larry could hear the doctors and nurses talking - someone said to send a Chaplain to the family and Larry wondered if he was dead - he was scared, wanted Jane |
| 0:28:00 | According to the records, Larry was left naked on the table for about 25 minutes, they never spoke to him - but their records said his pain was 5 / 10, but Larry wasn't feeling any pain - Larry heard one of them say they would have to shave Larry, so he thought he must still be alive, but why would they want to shave him? |
| 0:29:00 | They put 2 more IV ports in his arms, so that he had 2 in each arm, but there was nothing in the record - he could hear them talking and laughing |
| 0:30:00 | Larry found in his record a consent form that stated that Larry had verbally stated that he was having an 'emergent cath', but he did not even know that term at that time - but Larry did not say that, and their records showed him 'alert X3' - but they had given him 4mg of morphine and 150mcg of fentanyl and 1mg of versad |
| 0:31:00 | CMS (Centre for Medicare / Medicaid Services - government watch dog) admitted the consent form had only been completed after Larry had been drugged - but CMS also said no reasonable person would say no to gold standard treatment |
| 0:32:00 | In the medical records, one doctor said he thought they should just put Larry in a room for observation, but the hospital had already called in the cath team (cath team: xray above steel table, from groin to chin) |
| 0:33:00 | They go in through the wrist if they are experienced, otherwise in through the groin, as happend to Larry - they insert flexible wire with camera on the end after shooting dye into your system, known as angiogram - and angioplasty is when they go in and bust blood clots, or open an artery with a balloon, aka PCI except put in metal stent |
| 0:34:00 | stents have a habit of forming plaque and platelts and blockage and probably heart attack |
| 0:35:00 | Larry was cold, didn't know what was going on, pressure from xray machine, and also immense pressure in his groin as they pushed the tools up through his arteries - when all is said and done, they put 2 stents in Larry that will probably kill him at some point in time - another artery was 38% blocked, but they didn't do anything with it, they will save it til later - for another costly operation |
| 0:36:00 | so Larry is naked on the cath table, so cold he's shaking - the records show that Larry's blood pressure dropped severely at that time, Larry went into cardiagenic shock, which is low blood pressure for more than 30 minutes |
| 0:37:00 | Larry and Jane don't think it was cardiogenic shock, they think it had to do with the massive amount of fentanyl - they were also doing a procedure to clear out the clots at that time, so it could have contributed - the doctor who did the procedure was new, just learning |
| 0:38:00 | The nurse told Larry that they were going to put suture's into Larry and that it would hurt - they sutured 3 different places, because they also implanted a pump to help his heart, they sutured to the inside of his leg - as well as sutured a pacemaker into the inside of his other leg |
| 0:39:00 | They didn't use a numbing agent for the sutures - Jane says it seemed like they enjoyed inflicting that pain - this would become apparent later when they got the medical records |
| 0:40:00 | After suturing they moved Larry onto a gurney with a sheet over him and took him into the hall where he caught a glimpse of Jane and their son - they moved Larry to the CCU - coronary care unit |
| 0:41:00 | They moved Larry onto a bed but the nurse was flustered because the gown Larry was in was not the right gown for CCU, so she ran off leaving Larry naked again - she found a gown and put it on Larry, but only from his navel up to his chin - she was trying to hook up the equipment |
| 0:42:00 | She was complaining about too many wires, not enough connections, she didn't know how to do it - then the room fills up with IT techs and more nurses - the nurse told Larry to urinate and if he couldn't, she would put a catheter up his penis - so Larry peed into a bottle in front of a room of people as look on and talked and laughed - then the nurse showed the people how she was cleaning up Larry like a baby, and they laughed |
| 0:43:00 | It is hard to reconcile the juxtaposition of Larry perhaps dying from a heart attack, and the laughter of the hospital staff in the same room and context |
| 0:44:00 | A woman asked Larry if his spouse sexually molested him - but Larry felt like he'd just been sexually molested and felt humiliated and wanted Jane - he could finally hear her voice and she was having a tense conversation with the nurse about who his spouse was - the nurse then pulled the sheet up to cover Larry' genitals |
| 0:45:00 | The staff put Jane and her son in a waiting room, and told it would be 15 minutes - 2 hours went by - but there was hardly anyone in the hospital, but their son grabbed a nurse |
| 0:46:00 | She started laughing at him 'I know who you're here to see' - she told them how to get to Larry's room, but was laughing the whole time - Jane went towards Larry's room, while their son went to fetch his diabetic medicine from the waiting room |
| 0:47:00 | As Jane gets to Larry's room, she can see the sheet is only covering Larry from his navel up - the nurse turned smiling, but when she saw Jane she told Jane to get out - Jane said 'why, I'm his wife' - 'no you're not' - Jane said "I am' |
| 0:48:00 | The nurse starts laughing again and adjusting the sheet on Larry, saying 'there was a room full of people, I didn't know how to hook up the equipment', laughing the whole time |
| 0:49:00 | When Jane and her son arrived at the hospital, they were told that Larry was not there and were told to stand aside - the staff whispered among themselves and then yelled across the room that he was in the cath lab and they would send a chaplain - a nasty looking man in a polyester suit said he'd take Jane and her son to the waiting room |
| 0:50:00 | Jane tells the chaplain that they were fine and he could go - he said no, he'd stay - Jane repeated that she preferred that he left, but he refused - Jane and her son wanted to talk privately, but he wouldn't leave |
| 0:51:00 | The chaplain's phone rang, it had it on speaker phone - Jane could hear the person on the other end refer to Larry - but the chaplain walked away so Jane couldn't hear any more - he then said they were working on Larry - this happened 3 times - the 3rd time the chaplain said the doctor was ready to speak to Jane and her son - They got to the doctor's office, and again Jane asks the chaplain to go away - she put her arm across the door and said I don't want you in here, you have to leave now |
Part 2 of the interview with Larry and Jane next week.
Connect with Larry and Jane on Twitter
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I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.
If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description: RemediesPodcast@gmail.com
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Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.
If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.
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Email me to learn more or book an appointment: RemediesOnlineCounseling@gmail.com
Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.