Medical Error Interviews
Liz Perloff: Dislocated foot bone missed for years leads to medical gaslighting for years

Liz Perloff: Dislocated foot bone missed for years leads to medical gaslighting for years

November 23, 2020

When yoga teacher Liz fell down a flight of stairs while moving a mattress and injured her foot, she had no idea that multiple misdiagnosis and missed diagnosis would cause her years of medical gaslighting and chronic pain.  Liz’s health care experience is littered with story after story of incredible incompetence, false accusations and patient blaming. 

With a few exceptions, most of us are raised to believe that our health care systems are looking out for our best interests, that they are self correcting institutions that prioritize patient safety. In reality, the health care system has morphed into a system that prioritizes and protects the status quo of physicians as god-like entities that can do no wrong. And unless you’ve experienced medical harm, neglect or gaslighting from the health care system it is hard to fathom that a strong element of the ‘helping’ profession is really about helping themselves.

This is evidenced by the alliance of physicians with lawyers to protect doctors when they harm or kill patients. Those high priced lawyers will try to delay court cases to run up the lawyer fees, essentially bankrupting the injured patient. Or the lawyers use stall and delay tactics in hopes the patient dies before the case goes to trial.

To complete the moat around their elite status, physicians worked the political system to have laws and policies implemented that further protect doctors from accountability.

This further entrenches the medical system as unaccountable for their actions. Yet we only have to consider that medical error is the 3rd leading cause of death to recognize that the doctor / lawyer / politician triumvirate is effectively working to protect a high harm and death rate.

Liz shares the failures of the medical system, and the gem of a physician she found that  has helped improve her quality of life --- a quality needlessly diminished by repeated medical errors.

Connect with Liz Perloff:

Twitter @thepenof 

Website: FromThePenOf.com 

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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

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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.

Tracy Fossum: Chronic pain, chronic gaslighting, chronic bias and a heart attack

Tracy Fossum: Chronic pain, chronic gaslighting, chronic bias and a heart attack

October 19, 2020

When Tracy Fossum had all the symptoms of a heart attack, the emergency room doctors thought Tracy was drug seeking and sent her away. Then her pain specialist physician implored her to go to a different hospital’s emergency room because they were heart attack specialists and would have to run appropriate tests. 

But they thought Tracy was drug seeking too and made her wait 6 hours before being seen by a doctor --- and even then and in spite of being in immense pain for hours, the doctors and nurses were shaming and denigrating Tracy -- that is, until her heart stopped beating.

At that point, the doctors and nurses suddenly became empathetic and supportive of Tracy -- not because they cared about her, but because they realized she was having a heart attack and her husband had witnessed the abuse and neglect and was about to witness her death by medical bias.

This is just one of many harmful medical experiences Tracy has endured while being sick since childhood -- and they have formed her advocacy work around chronic pain -- and as more Long Covid patients report chronic pain, the number of patients needing Tracy and her team’s support is about to explode.

 

Connect with Tracy Fossum:

Email: Helpalbertaspain@gmail.com 

Website: Www.helpalbertaspain.com 

Facebook: Www.facebook.com/groups/helpab 

Twitter: @HELP_AB

 

Donna Penner: Every surgery patients nightmare: Awake during surgery. “Scalpel please”. And the anesthesiologist has left the OR.

Donna Penner: Every surgery patients nightmare: Awake during surgery. “Scalpel please”. And the anesthesiologist has left the OR.

June 13, 2019

Donna Penner was having routine surgery but something went horribly wrong and  through the failure of her anesthesiologist - Donna was awake during her abdominal surgery, but also paralyzed so she couldn’t tell the surgical team. Donna could feel every excruciating scalpel cut, and the surgeon moving her internal organs around.  

 

In torturous pain, and suffocating through lack of oxygen, Donna resigns herself to death and mentally says good bye to her family. But the surgeon notices Donna’s heart rate is very rapid and she can hear him ask the anesthesioligist why Donna is in distress. 

 

Donna feels a sense of relief that the surgeon has noticed and that she is about to be saved from death. But then she hears the nurse reply that the anesthesiologist has left the operating room. 

 

The surgery continues, the excruciating pain continues, the suffocating continues - as death nears, Donna has an out of body experience and is immersed in warmth and safety and she welcomes its sweet embrace.

 

But death does not come in that moment, and Donna finds herself in her body again - with the pain and suffering.

 

But the medical errors do not end there - as the surgery ends Donna can’t believe she has survived, but her breathing tube is removed prematurely and Donna’s paralyzed body cannot breathe on its own and she starts to suffocate again - the nurse yells at Donna to breathe, but she can’t….

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I wish I could say Donna’s trauma from the medical system ended after the botched surgery, but as you are about to hear, Donna’s experience with a system designed to protect physicians and undermine patient victims adds another layer of trauma onto her life.

 Follow Donna on twitter 

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SHOW NOTES - TIME STAMPED

0:04:40

Donna grew up on a farm in Manitoba, Canada, middle child of 3, cows, dogs, cats, hogs - very happy childhood - raised to be responsible, honest, hard working, good values and qualities - parents did a good job

0:07:20

Donna's health care error started several years ago when she had abdominal pain and went to the local clinic - kept for 24 hours they didn't know what was going on - but transferred Donna to another hospital - had laproscopic surgery scheduled

0:08:10

Donna has had surgeries before, anasthetic before no problem - but feeling anxious this time and asked for sedative and was refused - the first thing that went wrong - taken to operating room (OR) and prepped for surgery - anesthesiologist said to Donna take a deep breath and Donna 'was out'.

0:09:15

The next thing she remembers is waking up and hearing sounds in the OR and thinking 'good it's over' and know I can feel relaxed and don't need to feel nervous any more' - and then the surgeon spoke and what he said haunts Donna to this day: "Scalpel please." - then Donna felt the first incision - excruciating pain, beyond description

0:10:25

Donna tries to alert surgeon and staff that she is awake and tried to scream - but couldn't open her mouth - couldn't sit up - realized she's paralyzed by the paralytic medication used for abdominal surgery - so the anasthesia did not take effect, but the paralytic did - Donna could not scream or move but could hear her heart rate on the monitor as it sky rocketed to 147 according to the surgeon (later) - Donna starts to panic - trapped in body and couldn't do anything.

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0:12:00

As Donna heart rate quickens, she needs to breath faster to supply more oxygen but she couldn't take a breath because she was intubated (tube in her throat to ventilator that breathes for her) - but the ventilator set at 7 breathes per minute, but what Donna needed was much more - so she felt like she was suffocating

0:13:40

"She's in distress, she's in distress" surgeon says, asks anasthesiologist what's wrong - a nurse replies that the anasthesiologist is not in the OR anymore and doesn't know where he is - Donna panic increases - surgeon tells the nurse to find the anasthesiologist immediately - Donna's hears the nurse leave the OR - after what felt like an eternity, anesthesiologist returns - Donna feels relieved that he will realize she's not unconscious and will save her from the pain

0:15:15

That did not happen - anesthesiologist gave her another medication via IV, but did not make Donna go back to sleep - for the next 90 minutes Donna felt the surgery happen - insertion of instruments into her abdomen, exploring, she could her the surgeon comment as he looked at her appendix, kidneys, colon - the whole time Donna is experiencing excruciating pain while he pushes her organs around

0:16:25

Donna hears the surgeon exclaim that there is a lot of blood, and this is not good - Donna continues to panic and wonders why they are not noticing she's in trouble - Donna didn't think she was going to live through it - the pain was so bad she thought she was going to die - this is every surgery patients nightmare 

0:17:35

Donna thought about her kids, her husband and worried that if she died they would never know what her last few hours of life were like, the pain and torture - Donna resigns herself to death and says her mental good byes to her family - and ask God to take her away from the agony and pain of surgery.

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0:18:45

Surgery ends and Donna feels relief that she survived the surgery, but she's still in an immense amout of pain - Donna notices she can mover her tongue a little bit as paralytic wears off - starts to wiggle breathing tube in her mouth to get their attention - anesthesiologist noticed and he removed the tube from her throat - but Donna is still paralyzed and cannot breathe and starts to suffocate and realizes she's about to die - the nurse starts telling Donna to breathe, but Donna cannot breathe

0:20:45

Something amazing happens - Donna has an out of body experience - she could hear OR sounds, voices - in a place somewhere between heaven and earth - Donna could feel a presence and felt it was God with her - her fear left, the pain was gone, it was warm and she felt safe and protected - Donna smiles when she thinks of this - at this point she knew she would be okay whether she lived or she died

0:22:20

Donna prayed and asked God to take her - she heard a voice that said she would be okay - that was reassuring - Donna gets very emotional when she thinks of that - Donna hears the anesthesiologist say 'bag her, bag her' and put a mask on her face to force air into her lungs - immediate relief with oxygen - lungs were on fire - anesthesiologist gave her another injection, a paralytic reversal and within a few minutes Donna started to regain movement

0:24:35

Donna moves her head side to side to get their attention - nurse asks anesthesiologist why Donna is doing this, anesthesiologist says he doesn't know

0:25:00

"I was awake, I felt him cut me" were the first words Donna was able to speak - 2 nurses and anesthesiologist in room, but they had shocked look - Donna repeated herself and told them what she heard during the surgery - but 2 nurses and anesthesiologist did not say a word - Donna realized they were not going to even acknowledge what she had said, a wall of silence went up

0:26:35

Donna asks for husband Brian but he was not allowed until Donna was in recovery room and tells him immediately what happened - Brian tells nurse they want to speak to anesthesiologist immediately - nurse says anesthesiologist has already left the hospital - Brian says 'I don't care, you go find him, bring him here' - a while later the anesthesiologist walks into Donna's room

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0:27:50

anesthesiologist has papers in his hand with portable table and shuffled papers - did not make eye contact with Donna or Brian - Donna tells him her experience - anesthesiologist shrugged his shoulders and said 3 words "It happens sometimes" and left the room - Donna and Brian shocked 

0:29:30

Scott says 'invalidated trauma deepens trauma' - Donna says it is secondary harm - just as traumatizing as original trauma itself - felt like she didn't matter, no big deal for anesthesiologist - Brian asked for surgeon - Donna told surgeon her experience, he held her hand as she spoke with tears in his eyes and said he was sorry this happened and we will get you help to get through this and do an investigation - but the nurse did not acknowledge or offer words of comfort or kindness

0:31:40

Donna went home that day and that night the nightmares started - the surgeon called the next day to check how Donna was doing - she spoke to him several times over the next few weeks - Regiona Health Authority (RHA) was notified and Donna was in therapy 2 weeks later and diagnosed with complex post traumatic stress 

0:33:10

3 weeks later Donna asked for an interview by RHA for an investigation and asked her to meet with them at the hospital where the trauma occurred - they did care how the location of the meeting would impact Donna - one of the worst things they could've done - Donna says they have changed this practice since

0:35:45

Donna does RHA interview and doesn't hear from them at all - Donna went back to work to use as a distraction and to feel 'normal' - 3 months later Donna is scheduled for a hysterectomy surgery - she struggles with PTSD and the need for more surgery - still no word from RHA, Donna contacts VP of medical services to talk - Donna had to reach out, when RHA should have been following up

0:38:00

Donna is given a contact at RHA for any of her questions - but Donna is just given the run around - Donna realizes that is futile and goes directly to VP with her questions - as time went on, Donna was able to get some information - many things wrong - Donna very mistrustful as her next surgery approaches at different hospital - but she needed the surgery - they gave her a spinal anesthesia instead - But Donna does wake up half way through surgery and turns to the anesthesiologist and says 'just checking to make sure you're here' - that surgery went well

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0:39:50

Donna told by RHA she would get a report of her medical error - Brian did a lot of research about anesthesilogy and standard of care and found that anesthesiologists are never to leave the OR - "crictical incident" report to be sent to Manitoba health and Donna keeps asking for it and given the run around - finally after many, many months of trying to get a report she finds out that it was not recorded as a 'critical incident' because the patient had reported the error, therefore labeled a 'complaint' - only when staff report an error is a 'critical incident' report filed

0:42:20

No critical incident report filed because the patient made them aware of the error - the system is set up to help providers, not to protect the patient - Donna asked for internal report - and again given the run around - Donna meets with Theresa Oswald Provincial Minister of Health - Oswald says she will get the report for Donna - about 3 weeks later Donna get a copy

0:44:20

But the report is only 1.5 pages and has only 3 bullet points recommendations to improve safety - Donna cried because so disappointed - the report did not mention the effect on Donna, it did not admit a mistake was made, it was very vague - Donna asked again to meet with VP and with CEO of Hospital and confronts them with their own weak report and threw it on the desk and said 'you have to do better' - the report did not address what went wrong with Donna's surgery - they admit there were actually 3 more recommendations that they did not share with Donna 

0:46:30

Donna demands to see the full recommendations - they were 'a joke', ludicrous, ridiculous, a shame they didn't learn anything from their medical error - then Donna learns that another report had been sent to Manitoba health - Donna has tried for years to get that report but the goverment has legislation that protects medical providers and does not allow public access to reports - 11 years later Donna still doesn't know what went wrong during her surgery

0:49:40

Donna knew early on she had to share her story to bring awareness - "need to tell my story, need people to know what happened to me" - contact with CPSI (Canadian Patient Safety Institute) with their Patients for Patient Safety Canada group - other patients or surviving family members, common factor is all have been harmed by medical system, and all have desire to change the system - through this group Donna started advocating and tell her story publicly - as time went on, HRA became less interested in Donna sharing her story publicly

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0:52:50

Donna made a video with PPSC for HRA to use to make the process works to support the patient harmed by medical error - Donna wanted to share beyond her region - contacted Head of anesthesiologist at university and Donna invited to speak to medical students about her experience - travels to share with different medical conferences, nursing students - healing and empowering to do advocacy - making meaning out of horrible event

0:58:00

Husband Brian a solid support over the years - Donna worked for 2 years but was not dealing with the trauma - did not want to go on medical leave for PTSD, but had no choice - still has flashbacks, nightmares, memory problems - still struggles every single day

1:00:40

"I was surviving, I wasn't living" - Donna tells Brian she doesn't want to live any more - asks Brian to hide her medication - Donna wants to escape the pain - the darkest day she had - but has struggled with suicidal thoughts - but children and grand children are reasons to live and first grand child helped with wanting to live

1:05:00

Donna advises other medical error victims is to talk about it - therapist warns that some family and friends and co-workers will get tired of hearing about it, but to keep sharing with others - best advice she's ever received - but also has received negative feedback and judgment from family, friends, co-workers who do not understand PTSD or mental health and have accussed Donna of faking it

1:07:00

Donna persists in sharing and raising awareness of medical physical and mental harm - the more we share, the more people can learn - let people know how devastating medical error can be - some days feels like beating her head against a wall with frustration with the uphill battle of advocacy

1:09:00

There are days when she feels like giving up with advocacy - cried many tears - maybe time to move onto something else - feels like a loss, betrayed, abandoned - "I will not be silenced" - Donna will continue to share her story and not hide from the culture of silence - not an easy road - continues to receive therapy because of medical error - Donna continues to pay the price for someone else's error - dealing with unwanted change is the hardest change

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1:12:40

There are people who listen and want to change the system so it is safer for patients - there are good people, not all are narcissists - Donna focuses on those who can make change happen, listen to patients, and learn from horrific mistakes - system allowed bad behaviours against standard of care, and allowed it to continue and that is why Donna was harmed

1:13:50

Surgeon said 'I hate it when he leaves the OR, it puts more pressure on me to monitor the patient' - so the hospital knew this was happening and against standards of care and allowed it to continue to happen until Donna got hurt - they shouldn't wait until there is harm to make changes

1:15:15

Donna has had to have multiple surgeries since and it is very difficult to trust the system that hurt you, and the people in those same positions, although at different hospital - takes courage - finds vast majority of doctors and nurses are good people, but a few bad apples can ruin it 1:17:20

Donna wonders what would've happened if she had of died on the operating table, would any one have known what she went through and things would've continued - using her survival as meaning making because there are bad behaviours - 1:18:15Who are the real experts in medicine?' - it is not the doctors or nurses - patients are the experts in their own care - doctors need to get off their pedestals - Donna tells medical students: don't confuse your 1 hour of training in PTSD with my 11 years of living with it

1:19:40

It is a hard story to hear - Donna tells it like it is because people need to hear - we need to educate people on patient safety - the momentum of patient safety advocates is great to see

1:20:38 END 

 

 

 

Jeff Wood: The new Patient Zero: Hear how Jeff overcame years severely ill, bed bound, & medically abused to find his own diagnosis.

Jeff Wood: The new Patient Zero: Hear how Jeff overcame years severely ill, bed bound, & medically abused to find his own diagnosis.

May 29, 2019

Jeff Wood has one of the greatest Lazarus-like life stories you will ever hear. Jeff’s experience is made even more remarkable by a health care system that denied he was even ill. Jeff was so sick and disabled he spent years bed bound requiring care from his family, while physicians told him he was not really sick and that he had psychological problems.

But Jeff was very, very sick, and through his own tenacity and own research from his hospital bed, was able to determine the cause of his inability to be vertical, set up a meeting with a world renowned neurosurgeon, get a diagnosis over his phone, and a referral from that neurosurgeon to transfer Jeff to his hospital for surgery.

But the current hospital, deeply ego invested in their psychological diagnosis, refused to transfer Jeff for the surgery, while they continued to verbally and psychologically abuse and torment him.

I am amazed by Jeff’s journey to hell and back, but especially by his rational and grounded account of medical errors that can be traced back to when he was a toddler, and his determination to help other patients not have to endure the medical error and abuses he survived.

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4:45

Jeff talks about how his story will blow people's mind - his tethered cord, leg and foot pain as a child, Jen Brea

6:15

Tethered cord and its relationship to craniocervical instability (CCI) and the 3 parts to our spinal cord, but Jeff's cord was still attached, but he had no idea except for leg and foot pain until he was 4 years old - diagnosed with 'anxiety'
8:10
Dr Petra Klinge - top tethered cord surgeon in the world - a lot of her patients also have CCI - 2 conditions often occur together
9:05
After Jeff's CCI surgery, he started to experience the same foot pain he had as a small child - 2nd surgery to free his cord - more symptoms went away
9:40
Jeff thinks if he had of been diagnosed properly as a 4 year old and had the tethered cord surgery, he would not have developed CCI as an adult and lost 4-5 years to severe illness
10:25
Two conditions related to tethered cord: Spina bifida and Ehler Danlos Syndrome (EDS)
11:03
Jeff studied cognitive science - standard childhood - he is interested in the human mind - mutliple realities - how do we open our minds?
12:45
Working toward his Doctorate - but started to get sick with 'mild' ME (Myalgic Encephalomyelitis) in Graduate School (end of 2011) - had bad flu but didn't get better - only half the energy he used to have - shocking, didn't know what to think - 'I'll just push through and it will go away' - it didn't, the more he pushed, the sicker he got
15:00
Can't socialize, can't go to the gym - had to go part time to school - then ended up bed ridden June 26 2014.
16:30
How being severely ill impacted his relationship - Jeff's parents came to help take care of him - put fridge in his room - couldn't prepare meals, needed help bathing
 
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19:00
Many tests and specialists but none could figure out his problem - Jeff would try to generate hypothesis to explain his symptoms - but the doctors would say he was healthy, that maybe he had anxiety - imply he was depressed or malingering or take advantage of medicine or seeking attention
21:10
After bad crash in 2014 Jeff started looking into ME - started seeing Dr David Kaufman
22:20
Relieved to find illness, ME, that matches his symptoms - but no known cure, and is life long - a death sentence, overwhelmingly sad
23:15
Dr Kaufman history of HIV physician - works with discriminated populations - had moved onto the puzzle of ME - a very compassionate doctor who understands some patients are harmed by health care system - same office as Dr Bela Chheda
25:00
First visit with Dr Kaufman - he was very curious - wanted chronology of symptoms, Kaufman was very prepared, very good listener - Jeff had to lie down during appointment because he walked but too embarrassed to use his wheelchair - Kaufman did not blink - diagnosed with POTS (postural orthostatic tachycardia syndrome) - autonomic system dysfunction when going from laying to standing, heart rate, blood pressure affected - took lots of blood for testing
28:15
Jeff learns for first time he has abnormalities in his blood in spit of many tests over previous years - Epstein Barr virus (EBV) - IgM antibodies for acute infection - IgG antibodies indicate persistent infection - Jeff recently infected with EBV - but Kaufman sees it a lot in ME patients - but when Jeff gets to wear neck collar, his titres disappear
 
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30:15
Jeff explains how brain stem compression can affect the immune system, autonomic system - turns out both systems work together - cause downstream effects including energy and Kreb Cycle - Dr Ron Davis had found abnormalities in energy metabolism in ME - if you have a structural problem in your brain stem it can impact auto, immune and metabolism, all found in ME - endocrine problems too? Jeff thinks there would be
32:50
Also found Jeff's natural killer function low late 2014 - unsure why - discovered very low vasopressin causing frequent urination - also a symptom of tethered cord because it is a neurological problem - neurogenic bladder - Jeff basically had no vasopressin hormone - associates tethered cord with frequent urination as his body tried to create a new balance - ME structural problem triggers cascade of symptoms
36:05
Started antivirals for EBV, 2 standard meds - also started 2 meds for POTS and some symptom relief but would then be too active and crash / get sicker - likens meds to a bandaid, but had to 'pace' - budgeting energy - if Jeff made breakfast and showered he'd be sick for days, but if only made breakfast, he could shower the next day
38:30
ME, Myalgic Encephalomyelitis - Jeff explains a 'crash' from exertion, like showering or making breakfast - equates showering to running a marathon without any training and carrying 40 pounds - the more severe ME, the less a person can do - Jeff couldn't even shower on his own, he had to have people to wheel chair him to the shower chair and directly back to bed and that would cause a crash
41:35
Periods when Jeff is so sick he cannot speak, then did not have energy to write simple notes - crashing can be caused by light and sound - Jeff experienced this, he could not tolerate light, it would crash him for days - dark room, ear plugs, only showered every 2 weeks because it would make him so much sicker - very low quality of life
43:30
Jeff became more severe in 2015 after starting to see Kaufman and had some improvement but Jeff pushed himself and crashed into severe - emaciated, extremely pale - Jeff's Mom said he looked like he was dying of cancer - only when he was very severe did Jeff look ill, contributing to dismissal by doctors
 
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46:10
Jeff's partner and parents knew he was ill even though doctors said Jeff was fine - Jeff's partner saw his daily decline - fortunate to have support of partner and family - Jeff's mental health had to fight to want to keep going, to live, to figure out what was going on - even though he knew the odds of getting better was slim - but he was going to try to defy the odds and had to psych himself up - Jeff would say to himself when feeling overwhelmed and hopeless, he'd focus on good things like his cat and his partner - profound grief and sadness from his situation, but not depressed because he wanted to do things
50:30
With ME, Jeff wanted to do things, be social, but too ill
51:35
When very severe, Jeff realized that only improvement came by being completely still, no talking, no movement - after few days slight improvement - realized he needed to do extreme pacing to get small gains - now understands that was taking pressure of his brainstem by being supine - allowing body to heal
53:40
One day Jeff's neck started to hurt - had root canal and some teeth removed, noticed he had to chew differently - then 'boom' his neck was very painful and getting headaches - felt like his head was sinking down between his shoulders - breathing difficulty when upright - felt like 'the opposite of winning the lottery twice' - very sad situation with ME and completely new problem - went to emergencvy room (ER) several times and treated horribly
56:10
Jeff reluctant to go to ER - had horrible, traumatizing issues when going with ME symptoms - Mast cell issues - assumed Jeff had psych issues and labeled him with anxiety - ER physically ejected him by security - so when neck problems developed he had to try 3 different ERs in one night but none would help - Jeff asked for cervical collar and that was helpful
58:45
Collar is helping, breathe easier - will tide him over until he can get more help - but not getting any where in California in spite of research being showed to specialists - journal articles about CCI and how they can cause every symptom Jeff had - took them to Stanford hospital and University of California, San Francisco (UCSF) hospital but doctors offended Jeff would self-diagnose, and dismissed him and journal articles
 
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1:01:25
Jeff gets MRIs but they are read as 'normal' but Jeff knows from his research that he needed specific type of MRI so specialist can interpret - pivotal moment when he got admitted when he switched to 'weaker' collar, but soon collapsed, but sill couldn't sit up - something had fundamentally changed - waited 24 hours still could not sit up - perhaps 'stronger' collar weakened Jeff's already weakened muscles - Catch 22 - but Jeff so severe, the collar allowed some function
1:04:40
Jeff thinks CCI symptoms is extension of ME - but once Jeff had CCI surgery, his ME symptoms lifted - tethered cord since birth, pulls on brain stem, related to EDS
1:06:40
How does viral infection fit into this puzzle? 2 ways: virus can degrade collagen / ligaments - if you already have EDS, even more vulnerable to viral degradation of collagen - 2nd way is already have structural problem impacting immune system, then a viral onset may cause CCI / ME.
1:09:25
Admitted to local hospital, they were hostile to him always, that didn't change - Kaufman and family advocated to get Jeff admitted - they did MRI but not the right one to detect CCI and no CCI experts in California - but Jeff knew he needed to get to a hospital with CCI neurosurgeons - but this hospital treated Jeff as malingerer - finally a neurosurgeon coerced to see Jeff, but surgeon lied about EDS and CCI knowledge - arrogance factor
1:12:55
"I was very traumatized" - Jeff knew the only way to get through was to fight - hospital cruel and hostile to him, causing trauma - systemic medical abuse - iatrogenic harm
1:14:45
3 weeks flat on back, head down, feet up in hospital - transferred to world renowned hospital that considered very, very good - abuse intensified at new hospital
1:16:20
Nurses generally very kind - doctors were abusive - they gave him cerebral spinal fluid (CSF) surgery in case he had a leak - when that didn't work, they became more hostile - told he needs to accept there is nothing wrong with him - wasting our time - abuse by residents, physical therapists in spite of Jeff vomiting - but 2 internists validated Jeff's symptoms but they were powerless - others would berate him - Jeff wanted to be transferred to east coast to see CCI doctors, but they refused - they tried to transfer Jeff to a nursing home
 
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1:20:15
Jeff recounts laying in hospital bed having a consult with east coast surgeon via skype - Jeff gets diagnosed with CCI via video conference by looking at images - but hospital refused to transfer Jeff to east coast - so forced Jeff to endure abuse and torture and threat of financial ruin - these same neurosurgeons at same hospital also did same thing to a female with CCI - Jeff experienced new level of abuse, mistreatment - expresses empathy for others experiencing same
1:23:30
Jeff's family helps get insurance coverage, but it took months to change health insurer so he could to out of state for care - had to hire attorney to prevent hospital from shipping Jeff to nursing home - his lawyer tells him that he must have a family member with him at the hospital 24 hours a day so the hospital doesn't transfer him - fortunately no homes would accept him - treatment from hospital staff much worse when Jeff's family not in room
1:25:30
Contrasting health care experiences with something common and simple like broken arm to treatment when having complex illness
1:26:30
Hostile hospital runs more tests and do find CCI and put Jeff in the halo he'd been asking for since he was admitted - Jeff's explains screws put into his skull to hold head in place - used until he got surgery
1:28:30
First week of halo was difficult but Jeff adjusted - but gave him freedom from bed bound - he could stand up! "Felt like freedom" - Jeff's legs like toothpicks because of atrophy
1:30:20
Waiting for surgery with halo - then had surgery Jan 31 2018 - drilled holes into Jeff's skull and first and 2nd vertebrae and implanted plate to stabilize neck / head - 7.5 hours of surgery - had lots of pain meds coming out of surgery - but 'a hiccup' compared to years of severe ME - no more POTS, post exertional malaise - viral and urination normalized - light and sound sensitivity and brain fog disappeared - but hard to have hope but slowly accept that surgery helped ME
1:34:00
Jeff first person to link CCI and ME - wants to make others aware - Phoenix Rising forum to share info for ME patients
1:35:30
Dr Peter Rowe paper 3 people have ME but found to have CCI and surgery cured their ME - up to 10 people with CCI diagnosis, including Jen Brea - more people getting tested and treated - Unrest documentary about ME made by Jen Brea - both are sharing their CCI stories
 
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1:38:05
Dr Chhedda works same office as Dr Kaufman - Jeff originally took CCI article to Kaufman - Jeff is 'patient zero' - Kaufman believed Jeff and wants to solve problem and help patient - Centre for Complex Diseases
1:40:10
Jeff decides to tell his story publicly - feels he 'had to' tell people - when patients come together we can pressure the system to act quickly
1:41:30
Jeff's website and twitter account - will build Facebook page - wanting to partner with MDs and organizations to incorporate CCI into diagnosing ME - want to shout from roof tops so this knowledge can be intergrated into ME care
1:43:25
As Jeff was repeatedly mistreated, he became angry and that is driving him toward patient advocacy - Jeff thinks he will be 100% recovered - amazed by his progress - had accepted he would never get better - hard to believe he's not living like that any more
1:46:15
Mast cell problems and POTS disappeared after surgery - can go to gym, go for a run, be around his cats
1:47:30 End
 

About the podcast

I’m Scott Simpson, a personal counsellor by day, a podcast host by night, and a sick and disabled patient advocate surviving medical error.

My hope is that by sharing stories of medical error, we can bring awareness to this 3rd leading cause of death, and implement solutions for patient safety.

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But the podcast is not just about medical error experiences, I also interview people who are trying to make health care systems safer for all of us.

Turns out that a lot of people working on patient safety, have personal experiences with medical error.

The airline industry is quite transparent about their safety incidents. The exact opposite is true about the medical industry.

They work hard to ensure the public does not get easy access to data about medical errors.

Medical Error Interviews brings transparency to medical harm and death, giving voice to survivors and change makers.


You can support the podcast and help make health care safer by becoming a Patron or Premium Patron.

 
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