Medical Error Interviews

Kelly Anne Branco: The Gift of Cancer

 "The Gift of Cancer" - these are the words of Kelly Anne Branco - and in this interview she shares how the medical error and cancer diagnosis have lead her on a journey to take those tragedies and make a greater meaning personally and through patient advocacy.

 

The medical error impacts every aspect of Kelly Anne’s life, but she has adopted an attitude that forgiveness is a gift you give yourself.

 

KELLY ANNE BRANCO - SHOW NOTES:

A sickly child

0:04:50

Kelly Anne was born in Toronto, St Michael's hospital - grew up in Toroto - mother came from Azores - Dad came after his military service - a lot of family on her childhood street - working class neighbourhood - an awesome place to grow up - late 80s moved to Mississauga at age 10

0:06:30

Mississauga is a suburb just west of Toronto - nearly 1 million population now, but like small town back then - Mom did office work, Dad a construction foreman until his traumatic brain injury (TBI) - this made him more difficult to live with - and he couldn't work

0:08:30

Kelly Anne was a sickly child, always problems with her instestines - but her symptoms dismissed and minimized - but in her 20s, Kelly Anne started to have anxiety and panic attacks associated with stomack pain - terrified to leave the house for fear of being sick

0:09:50

Took a while to get her GP on board - who dismissed her symptoms as psychiatric - and sent Kelly Anne to a gastroenterologist - but had to fight to get referral - took 6 months to get appointment with gastro, but within 5 minutes had diagnosed Kelly Anne with celiac disease - probably since a child

0:11:15

Kelly Anne goes back to her GP and says I told you so - the GP apologizes - is willing to learn is what Kelly Anne likes about her - this is just a few years before her ovarian cancer symptoms emerged

 

     

 

Medical errors start in early life

0:13:15

Kelly Anne describes celiac diagnosis and treatment - gastroscopy found very poor absorption of vitamins and minerals - within a year intestines started to heal

0:14:45

January 2012 Kelly Anne stopped getting her period, it was odd - thought maybe it just stress or her birth control pills, so didn't worry about it - but after months passed she started to worry so went to see her GP - sent for ultrasound and they found a mass on right ovary - referred to gynecologist in August 2012

0:17:10

Stressful waiting for appointments, not knowing what's going on with her body - unknown is the worse part - wondering about having kids

0:18:45

Gynecologist asks Kelly Anne about other symptoms, but she has none - doctor asks why she's worried and to stop complaining, lots of women would like not to have their period - doctor is ending meeting and Kelly Anne asks if the doctor is going to examine her - huffily the doctor acquiesces and Kelly Anne has a 'quite rough' examination - dismisses ovarian mass as probably just a cyst

0:20:15

Doctor did not so usual cancer checks (CA125 test, biopsy) - just sent Kelly Anne away with new birth control perscription - she felt foolish, an idiot, scared, questioning self - the new birth control pill re-started her period and that reinforced the self-doubt and everything is fine with her body - but later, found out her body was not fine

0:23:15

January 2013 her period stopped again - had surgery to have her gall bladder out, so blamed the stress of surgery - had put on a lot of weight, became pre-diabetic, had seen what diabetes had done to relatives, went on strict diet, causing gall stones - pain in hte middle of the night brought Kelly Anne to ER - gets ultrasound, we'll call you with results, but they didn't call her with the results - she has another gall bladder attack

 

 

Gallstone surgery

0:25:30

Kelly Anne passes gall bladder stone - 'most horrendous' experience - finds out that she has lots of gall stones and needs surgery - took 2 months to get surgery - living off baby food oatmeal for 2 months

0:26:00

What they didn't know was that Kelly Anne had a tumour and a weakened immune system heading into the gall bladder surgery - infection post surgery

0:28:05

Back to family doctor - another ultrasound and MRI showed the 'mass' had doubled in size - Kelly Anne said she did not want to go back to that same gynecologist - Sept 2013 sees new gynecologist - but got her period again in July, but it didn't stop, getting increasingly heavy flow - pain shooting down her leg, anxiety, bloated - started carrying her 'diaper bag' for such heavy bleeding - new gyno runs fertility clinic - did ultrasounds in her office and reviewed by gyno - great bedside manner

0:32:00

Gyno says could be cyst or fibroid - recommends laproscopy surgery to remove cyst or fibroid - no discussion of running blood work to rule out cancer - for the next months, symptoms worsen - by January 2014 Kelly Anne has surgery with gyno - finds out that the mass had gotten so big, it had consumed her ovary

0:34:10

gyno couldn't remove the mass via laproscopy - so tries to 'schuck' the mass to seperate the mass from the ovary, but couldn't so decided to remove the whole ovary - she morcellated (minced) the mass and ovary - chopped it up and pulled it out - the worse thing you can do with cancer because the cancer cells go everywhere

0:36:50

After surgery, gyno says Kelly Anne will recover in a few days, they'll send the mass to pathology, and she'll see her in 6 weeks - Kelly Anne describes the surgery prep and the gyno's empathy and support and great bedside manner - had a great recovery, felt good

 

 

 

Granulosa Cell Tumor

0:39:30

Back to the gyno for 6 week follow up and Kelly Anne knew that the pathology report would be back - gyno gave a summary of the report, but did not give the pathologists comments or recommendations - gyno says Kelly Anne has granulosa cell tumor but its benign, don't worry, but come back in 6 months

0:41:30

"I trusted her" - periods normalized, feeling good - felt like normal healthy human being - returned twice to gyno for ultrasounds - gyno says come back in 8 months, June 2015 - but spring 2015 new mild symptoms emerge

0:44:15

Heartburn, bloating but just chocked it up to stress - but still getting period so thought 'its nothing' - but in March called to book June appointment, but got appointment beginning of May - symptoms continued0:46:20Has appointment in mid May for pelvic ultrasound in gyno's office - gyno says there is something big on your ovary and need to get it out - also books Kelly Anne for MRI in mid July

0:47:25

Kelly Anne goes for pelvic MRI - but after, the MRI technician wouldn't look her in the eye - but says, robotically 'you're perfectly fine' - Kelly Anne could tell she was lying - there's something wrong - she actually got the MRI in late May, so had been prioritized - gyno calls Kelly Anne and askd her to come into the office the same day.

0:50:10

Kelly Anne goes to gyno Monday June 1st who says there is a lot of stuff there (ovary) and going to send you to cancer pre-op consult - gyno says just a precaution as her tumour is benign and denies Kelly Anne has cancer and dismisses her concern - Kelly Anne tries to down play her fears, but couldn't imagine it was as bad as it was

0:52:30

On Friday morning, while at work, Kelly Anne gets a call from the cancer centre saying she has to come in that day - Kelly Anne realizes something is very wrong - but is told she has to go to another hospital to pick up her MRI results for the cancer centre

 

 

Its not benign, you've got cancer

0:54:20

Borrows Mom's car to drive to get MRI results at one hospital before driving across city to cancer centre - the admin behaviour and facial expressions showed concern, made Kelly Anne feel weird - sitting in waiting room with chemo patients, feeling out of place, didn't click what was going to happen

0:57:30

Onclogist says 'it looks like you have a recurrence of your cancer that you had last year' - this is the first time any one said she had cancer - shocked, all Kelly Anne could say was 'I have cancer?' - the oncologist says 'yes, you have cancer, you had cancer before' - Kelly Anne tells him she's not been told she had concer before, that the tumour was benigh - the oncologist gets frustrated, 'its not benign, you've got cancer'

0:58:45

Kelly Anne asks how bad the cancer is - the oncologist says it is everywhere on her uterus and left ovary that she'll have to have CT, biopsy, surgery, hysterectomy, chemotherapy, blood work, urine example - left with more appointments and to return on June 19th

1:00:00

At that appointment Kelly Anne had Mom and her boyfriend with her - oncologist says cancer is everywhere in her uterus, tubes, ovaries, colon, bowel - we need take out uterus and cervix and appendix - will be a rough surgery, then chemo

1:01:00

The oncologist suggests Kelly Anne see a fertility doctor to harvest eggs before surgery - Kelly Anne is offended and gets angry - she's already decided that if the choice is to delay surgery for a fertility appointment, her life is more important, so not delaying surgery - but oncologist is insistent and gets Kelly Anne into fertility clinic next day

1:03:10

Fertility clinic examines and says there is nothing they can do because of so much cancer around her ovary

1:04:00

Kelly Anne has surgery end of June - hysterecotomy, but save bowel - also removed appendix and other abdominal cancerous tissues - surgery a success, but big scar on her belly - 2 months to recover before starting chemotherapy in late August

 

 

Chemotherapy

1:05:50

Because Kelly Anne was stage 3C, fairly advanced, the oncologist wanted to try something different, very aggressive - treated with BEP, that has 3 drugs, including a platinum drug reserved for advanced cases as it is so hard on the body

1:07:00

They wanted 3 cycles of chemo - but also had an infection and open wound - still feeling weak, not sure if healthy enough for chemo, but doctors insist to start - after first cycle of 3 weeks whipped out her white blood cells - developed fever, infection and hospitalized for 5 days with IV antibiotics - realizes they may kill me trying to cure me

1:09:20

Chemo trying to kill cancer cells, but affects other cells - Kelly Anne realizes it is going to get worse before it gets better - Kelly Anne tells her Mom she's not going for second cycle of chemo - but went for her Mother - the worst 3 months of life, felt like she was dying

1:11:40

At the end of a chemo cycle she would have lymphedema, swelling legs, face, nueropathy in hands and feet, losing feeling in arms and legs, intense heart beats, resting on stair case to make it up, vertigo, tinnitus, lots of sleep, loss of hair, pixelated vision - couild only keep oatmeal down due to nausea - it was absolute hell

1:13:20

November 2015 to see oncologist - he says all clear, no evidence of disease - but during chemo, asking herself how this happened - so called gyno office and asked for copies of all her records and went to pick up her records but receptionist pretends she doesn't know Kelly Anne

1:15:00

Kelly Anne subsequenlty learns that when it is cancer, the doctor has to get a second pathology at cancer centre, so she wanted records from the cancer centre too - in reading gyno's notes, the pathologist had said that patient should be referred to onclology for staging and assessment - this is not what gyno told Kelly Anne - but pathologist's January 2014 report said nothing about it being benign.

 

 

Facing mortality

1:16:45

But Kelly Anne discovers that 1.5 years of gyno's notes are missing - and when Kelly Anne gets hospital records, they had no notes from prior to her surgery, no 2nd pathology from gyno doctor - Kelly Anne livid, this is not right - but puts it aside as she is so sick from chemo - lots of support for cancer patients, but when done chemo done and given NED label - 'no evidence of disease' - support ends

1:19:45

That's when the weight of diagnosis and loss of health and grieving hit Kelly Anne - a real eye-opener to address your own mortality - wanted desperately for normalcy - took 6 months to focus on recovery and return to work

1:21:00

But in March 2016 at follow up scan, they found more disease - that's when she started to mobilize to learn and connect with people online with granulousis cell tumours to share - met people who had lived with it for 15 - 20 years - learned that if she had treatment when initially diagnosed, she could have a better potential outcome

1:24:00

Learned of hormone therapy to maintain stability - was a sponge aborbing all the research - tranferred to a medical oncologist (vs earlier gyno oncologist) - wanted to try hormone therapy

1:25:30

Kelly Anne discovers 3 types of doctors: those that want to heal people, have empathy, compassion and listen - also science geeks want to heal people, but only want to deal with the person from neck down - the 3rd type is all ego, love the prestige and misdiagnose - but she had a great doctor who was open to try

1:27:00

Did a couple of months of a medication, hormone therapy - ovarian cancer they now know, is driven by hormones - hormone therapy suppresses hormones - may keep patient stable, and live a long time with cancer, or shrink the cancer - may be able to lead a normal life - whereas chemotherapy is much harder on the body

1:30:20

But the hormone therapy didn't work for Kelly Anne and cancer progressed and they found it on her liver too - so advised to try a different chemo drug and Kelly Anne agreed and started it March 2017

 

 

"Forgiveness is a gift you give to yourself"

1:32:00

Different side effect experience on the new chemo drug, but sill lots of nausea and fatigue - from her previous chemo, Kelly Anne became pre-diabetic due to the steroids - this time for chemo, she only did steroids with the infusion - took CBD oil instead and was not pre-diabetic by end of chemo - also took other supplements to help with side effects

1:34:15

But her cancer started to grow exponentially be the end of chemo - felt like she did all this for nothing - during this time Kelly Anne also sought legal advice about her mised diagnosis - the lawyer said that she did have a case, but the reality was that in Canada doctor's are protected by the Canadian Medical Professionals Association

1:35:00

The lawyer says - Tax payers pay the premium that pay the physician's lawyers - will be at least 4 or 5 years before a trial because they always fight and take it to trial - they will put you on the stand and blame you for not following up - it is very difficult to litigate these cases in Canada - it will cost you money and the most you can sue for under the law is your lost wages - and then your employer can sue you to recover the disability payments they paid to you - lot of work for minimal return

1:37:00

In Ontario, part of the physicians agreement with the provincial govt, is that the Ministry pays the CMPA premium - and the Ministry is funded by tax payer dollars - in the news the College of Physiciand and Surgeons of Ontario (CPSO) has had problems with disciplining their doctors

1:39:00

"Forgiveness is a gift you give to yourself" is one of Kelly Anne's values - willing to say the gyno doctor made a mistake, they are human - need to move away from mode of thinking of doctor's know everything - but I needed to know the gyno had learned her lesson so no other woman would go through what Kelly Anne did - so did not move forward with a law suit - instead filed a complaint with the CPSO that the gyno had practiced outside of her area of expertise - she's not an oncologist, just a gynecologist

 

 

Stopping the medical harm

1:41:10

Complaint process includes a rebuttal from the phsycian - Kelly Anne was gobsmacked that the doctor would still profess that Kelly Anne never had cancer, she was lying, she was wrong

1:42:29

Kelly Anne replies that the gyno failed to proved Kelly Anne with a year of her file - that Kelly Anne did have cancer and here's the report - but Kelly Anne got great support from the cancer community in preparing her reply

1:44:30

Gyno claims to have called the cancer centre, but no records exist - and not proper protocol by gyno

1:45:45

With ovarian cancer, it is not uncommon for doctors to ignore or mis-attribute symptoms - that's why mortality rate so high for ovarian cancer - 50-60% diagnosed pass away in 5 years

1:47:10

Complaint went to CPSO committee, 6 months later Kelly Anne got the decision - they said they sent gyno to remediation - made her change her practice so no longer allowed to do ultrasounds in her office without a radiologist reviewing the scans

1:49:00

CPSO not looking to see if other of gyno's patients also harmed - Kelly Anne's doctor is 'type # 3", it is all about her ego

1:50:30

Kelly Anne hopes gyno has learned her lesson and that other women aren't harmed - making her change her practice is a huge win because a radiologist will review scans - hopefully remediation and the slap on the wrist will help people get right diagnosis - prevention and early diagnosis is key

1:51:45

Has been a spiritual journy - 'forgiveness is a gift you give yourself' - when facing your mortality, start to ask what is my purpose, what do I want out of this live, what do I regret - wants to leave place better then I found it - went to CPSO and made complaint

1:53:00

Kelly Anne has come to a place where she accepts this is her journey and this is how it unfolded

1:54:00

Finished chemo July 2017, disease really accelerated - fluid in lung, abdomen, couln't eat, couldn't breathe, constant pain - made decsion to do surgery again - drain lung first by going in through rib cage with a tube and pump out fluid, 2 litres - could breathe when she woke up, felt marvellous - then being able to walk and eat, had regular bowel movements

 

 

Dying

1:57:00

Was dying before surgery - but they were able to resect her liver, removed spleen, resected bowel and reattach - cleaned as much disease / cancer they could see, but some left behind - removed 5 litres of fluid - 170 staples and tension sutures - lost a lot of blood - woke up without pain meds - lots of pain, had to wear binders to hold stitches - under for 9 hours of surgery

1:59:30

Heart took a hit - took 8 months for resting heart rate to get back to normal - but within 2 months more cancer - at this point it is chronic, not hoping for a cure - stability is realistic goal - have met women that have lived 20 30 years - just matter of finding right combo of meds - ongoing discussions with oncology doc about meds to try

2:03:07

In 2017 sought 2nd opinion from US hospital - and oncology doc was open to their opinion2:04:30Canada behind updated cancer monitoring - the last year has been trying to find right meds combo - including $10k a dose med 4 times, but it didn't work - new med means small tumours have stopped growing, medium sized tumours are slowing down their growth, but large tumours are being stubborn - added another med suppresses hormones and seems to be helping

2:07:30

Some meds tolerated better than others - side effect caused blood clots and trips to emergency room - pain and fatigue - can sleep 12 hour and nap 4 hours and feel like need more - losing hope will be able to return to work

 

 

 Making meaning out of life

2:09:00

Gifts from this experience is advocating with Ovarian Cancer Canada and a program called Survivors Teaching Students for medical schools and nurses and share their stories - worked with pharma companies, share her experience at conferences - also Patient and Family Advisor for psychosocial care - when you're ill it affects physical, emotional and spiritual

2:12:30

Whole life trajectory changed, want something different - healing journey - meet, connect, bond with other patients - a lot of good has come out of this tragedy - there is old Abroriginal saying that when you heal yourself, you heal 7 generations behind and forward - healing family relationships because of cancer experience

2:15:15

Wouldn't trade cancer because all of these great things have happened - perspective shift is the gift of cancer - connecting deeply with others is meaningful is liberating - feels freer, happier, more joyous having gone through all this - I like the person I am now then I was before

2:18:10

When you're sick you realize you can't take anything with you, and what you really want is to have the people that love you, around you - I've accepted and embraced that this is how my life is unfolding

 

The Gift of Cancer

Connect with Kelly Anne Branco on Instagram:

@BrancoBookNerd

 

Learn more:

The Granulosa Cell Tumor Research Foundation

 

 

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Host Scott Simpson

 

 

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

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….

 

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 

 

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.

 

 

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.

 

 

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

 

 

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

 

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

 

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

 

 

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 

 

 

 

Gregory Hartley Brewer - Whistleblower of a medical cover up - Lyme symptoms dismissed, treatment denied, years of illness, criminal behaviour

Gregory Hartley Brewer, from Bath in the United Kingdom shares his long battle to get a diagnosis for his Lyme-like symptoms, and then trying to access proper treatment once diagnosed with Lyme many years later.

 

But he is now embroiled in a long battle with the health care system as they try to cover up their missed diagnosis mistake and protect the doctors that not only denied Gregory medical care, but may have behaved in a criminal manner in conspiring to cover up their medical error.

 

But he has not given up: hear how Gregory is taking on the Goliath that is the United Kingdom health care system and exposing their attempts to hide a medical error that has morphed into much more serious and potentially criminal behaviour.

 

SHOW NOTES - TIME STAMPED

 

:04:00

Gregory, early 50s, born in Birmingham, UK - moved to States as a kid for a few years - back to London, then Bath - happy childhood, middle class upbringing - more sporty then academic - found drinking, girls and smoking so didn't go to university - bar, nightclub work - still looking for niche - loved helping people in community job

:06:30

2005 Gregory get bitten by tic in backyard, but he's unaware of the existence of Lyme - rash and flu like aches - April 2005 collapsed with stabbing pain in chest chest, 'like being stabbed with a knife", thought he was dying - within a week went to the doctor and was diagnosed with hyperlipidemia, aka high cholesterol and triglycerides - couple of weeks later to another physician in same clinic and recounts rash and flu like symptoms - doctor says that sounds like Lyme, but it can't be Lyme because you're not seriously ill

:07:45

A few weeks later he returns to doctor to say he thinks he has Lyme and she get angry and said he couldn't have Lyme because he's not seriously ill - Gregory believes her - in retrospect she was protecting her misdiagnosis that was only 4 weeks old - this is how uttterly their reputations come before patient treatment and safety - Gregory asks for Lyme testing, she refuses

:08:55

Realizes some of his doctor appointment notes are missing out of his file, thought it was strange but had faith that the doctors knew what they were doing and there can't be a nefarious reason for that

 

 

:09:20

He worsens with Lyme symptoms: Peripheral neuropathy, palpitations / pericarditis, chest pain, anxiety from encephalopathy, low grade meningitis, headaches, sore shoulders - by 2008 in bad shape, reticent to raise Lyme disease for fear of denigrating and angry reaction - symptoms cause big impact on his social life, went from very social to feeling too anxious and stopped going out, lost friends from isolation

:11:40

Gregory feeling anxious but not depressed, but no external anxiety trigger - no rhyme or reason when anxiety came - now knows it was bacteria impacting his brain - describes peripheral neuropathy in his legs - pain, squeezing, crushed and wants to explode - due to nerves being attacked by bacteria - may last minutes or hours, no rhyme or reason, sometimes hurts to walk - puzzling as to what is happening in his body, vacillates seeing doctors because they looked at him like a bloody idiot - by 2008 the doctor must have known these were Lyme symptoms - only 3 GPs in this clinic

:15:20

2009 bitten again by a tic in his field and sees rash on the inside of his arm - its a Sunday so Gregory went to health center, diagnosed Lyme immediately and given one week supply of doxycycline, but later finds out he should have been given 2 weeks according to the National Institute of Clincal Excellence (NICE) guidelines at the time - doctor sent note to his GP about Gregory's Lyme diagnosis - about 9 months later symptoms worsen again, returns to his GP and is again denigrated and dismissed

:16:20

GP says just because you had Lyme disease and it wasn't properly treated, doesn't mean you have it now - Gregory asks why their multiple discussions about Lyme disease are not in his medical file and the GP says she decides what goes into his medical file - Gregory requests that she make a note about his Lyme diagnosis in his file, she threatens to fire him as a patient if he keeps saying he has Lyme - turns out there is no mention of Lyme in his medical file from 2005 to 2014

:19:20

GP didn't want Lyme in his notes because it would come back and bite her - willful lack of insight about his symptoms - negligent since 2009 for failure to test and treat - switches to different doctor, and this doctor also says Gregory's symptoms are not Lyme - even though Bath high risk is endemic area there are no signs any where - Public Health England is responsible for responding to Lyme disease stopped Bath public heath from putting up signs after secret study found high concentration of tics in Bath area - without public signs Gregory wasn't aware Lyme in his area, mixed with phsycians who are Lyme illiterate - many, many patients sick but not diagnosed - a national scandal

 

 

:22:15

Lots of known unknowns about Lyme - NICE just changed guidelines saying that Lyme relapse can happen, and can access 4 more weeks of treatment - but lots of patients misdiagnosed and not diagnosed - but found new GP in March 2016 who is treating him well - gets 2 or 3 courses of antibiotics a year to manage, but not cure, his Lyme

:23:40

In 2018 Gregory gets Macular Erythema on his hand, a sign of systemic disease, but if not for that sign, he wouldn't be able to get a Lyme diagnosis - about 300 GPs in UK treating long term Lyme sufferers outside NICE guidelines - lots of Lyme patients don't get treatment

 

 

:25:35

Lots of UK people get tested positive for Lyme in Europe labs but testing in UK finds Lyme negative - UK relies heavily on testing and not on clinical symptoms - Gregory contends that since Lyme testing is unreliable and inconsistent, that clinical symptoms should be used to diagnose - also because a person can test positive for Lyme and not have any symptoms because they've produced antibodies to the Lyme - can also have no antibodies and still have Lyme because the body did not produce antibodies - ELISA and Western Blot tests - a scandal in the UK as thousands have Lyme symptoms but no treatment - central Europe is better at treating :28:15

Gregory thinks when a doctor doesn't know what to do when a patient tells them one thing and testing the opposite, they fall back onto science (testing) - and it is very poor in Lyme disease - NICE guidelines basically say we have no confidence in what we're proposing, but we need to propose something - because doctors can't see symptoms they will attribute to another illness or give the patient a psychological diagnosis - Rob Hackett Australian medic on twitter wants aviation standards in medicine - Gregory re-tweeted Scott's tweet about a black box in the operating room

:30:20

Hackett studies patient safety - bystander effect, ego, reputation - in Gregory's case it was ego that prevented the physicians from admitting they were wrong, thereby denying treatment to him - instead they conspired and were cruel and degrading to leave him ill deliberately - if not for diagnosis by another GP, Gregory would be still be suffering greatly with symptoms and still being told he has psych problems

:31:00

December 2014 these GPs decided that they couldn't give Gregory a diagnosis of Lyme - goes to locum to see doctor about symptoms but he was misdiagnosed with prostatitis and given medication for that and Gregory had a bad reaction - says to locum doctor that he has Lyme, doctor believes him, but only gives 2 weeks of antibiotics - Gregory goes back to GPs who say he doesn't have Lyme because he has negative serology - he feels depressed and distressed

:32:20

Gregory researches and finds that the Public Health England's Doctor Pathway says that antibiotic treatment may produce false-negative results - presents to GPs and this compels them to have a meeting with PHE but they send their newest and most junior GP to the meeting to withhold multiple information from PHE and to deny Gregory treatment in August 2015

:34:00

Gregory finds Lyme Disease Action help people with Lyme get a diagnosis - they write to his GP, who informs the PHE, who realize right away that they were previously withheld information about Gregory - however PHE leaves it to GPs to decide treatment and they say there is no Lyme to treat in Gregory

 

 

:36:45

LDA decides not to report these 3 GPs for criminal negligence, but Gregory is able to access treatment from them because if they refuse, the LDA can still report them - Gregory gets 4 weeks of treatment but did not yet know they were withholding clinical history from PHE so continues at the clinic - but if he had not got 2nd opinion, he'd still be suffering

:37:50

Gregory emails PHE directly and gets almost immediate response apologizing for discrepancy in the reporting of his symptoms in all the discussion - Gregory finds out later the PHE forwards email to Gregory's GP with angry note, so GP now knows Gregory knows that PHE was not given full medical file - this leads to more forgery down the line

:38:45

Gregory realizes the GPs are being willful, but he does not know why they wouldn't give full medical file to PHE - GP avoids talking to LDA because LDA has full medical file and will ask GP why she only sent partial file to PHE

:39:45

Gregory files complaint with NHS - GPs are employed by NHS - and recieves their 1 page report in March 2016 and it is "so corrupt" - ignores early diagnosis - Gregory files another complaint and this time NHS realizes he knows something is wrong - they produce 10 page report and dismisses Gregory's symptoms and blames him for poor medical care - so they are protecting GPs and covering up their harm

:41:40

July 27, 2012 - Eureka moment - if he is diagnosed with Lyme in 2015 from 2009 onset and denied medical care, then that is criminal negligence - now Gregory understands their motive and explains all their behaviour and actions: to cover their asses from criminal negligence which now not just a mistake, but a conspiracy to deny a patient treatment - they must have sat down at some point to decide to deny he had Lyme

 

 

:43:15

NHS notorious for covering up mistakes and attacking whistleblowers, be they patients or medical staff - there is a culture of defend, deny, delay - Gregory investigates himself by getting access to emails and puts more pieces of the hidden puzzle together - more denial, lying, created fraudulent email but never sent, blaming PHE, to protect their position and prevent exposure of their crime

:47:40

Gregory continues to research and submit evidence to Palriamentary and Service Ombudsman (PSO) and General Medical Council (GMC) in December 2016 - LDA says can't support Gregory, with subtext they will be punished as whistleblowers and closed down by National Health Services (NHS) - more coverup happens by GMC and dismiss his evidence - PSO even slower - Gregory appeals GMC decision, they admit Gregory's case meets their high threshold for investigation, but claim they see no evidence of doctor misconduct and dismiss the case - PSO also dismiss and ignore evidence

:49:30

Gregory takes the GMC to court in September 2017 but loses - appeals again to be heard - PSO closes investigation because "you will be disappointed with the outcome" - PSO well known as dust bin for complaints - September 2018 launches Judicial Review against PSO and gets oral hearing - Judge agrees PSO behaved badly but says PSO can act at own discretion - PSO fails to tell Gregory they must agree on scope of investigation, this gives him leverage to appeal - can't get legal support because nobody wants to believe 3 GPs intentionally denied a patient treatment for years

:53:30

Gregory has found case law that doctors must treat, otherwise a criminal act - PSO has broad powers, but refuse to interview 2 witnesses, who's careers would be in jeopardy for not reporting the GPs for non-treatment - this is all a lot of stress, not a normal life, wish for happy days - GPs just 500 yards away and other patients at risk - willfull lack of insight into patients Lyme symptoms - knows a woman who was dismissed by GPs, turns out she had cancer for 2 years, and died soon after proper diagnosis, and refused to apologize - they are a danger and Gregory will do everything in his power to expose them

:57:30

Others who are whistleblowers suffer greatly from blowback from goverment institutions - at end of the day, CEO of NHS Trust do not want their dirty laundry aired in public and will crush any thing that threatens that, no matter how obvious - recent case Dr Day in England where they tried to exclude junior doctors from whistleblower protection - statutory duty to protect patients - misconduct in public office - UK police rarely charge people in power

1:00:40

End of day, patients and medics suffer - if try to stand up, you are beaten down - most patients just want recognition and apology - but instead wilfull denial of their mistake - yet so wilfully doing harm by denying treatment - Gregory will have to report to police - conspiracy because junior doctor had no reason to lie, except to protect her senior doctors

 

 

1:02:30

Gregory sent email to junior doctor asking her to testify and the police show up on his doorstep with a 'community protection warning' to protect community from harassment - senior partner made sure junior doctor not available to be interviewed by police - 2 senior partners are professional liars - police refuse to acknowledge crime against Gregory, but feels he has to compel them to investigate

1:04:30

Started twitter April 2018 to put his experience out there - realize many others with similar experiences - solace and support finding others - next thing is to form groups and attack these organizations that are covering up all these cases - produce blog, keep campaigning - show its all a scam saying to public we've got orgs to support you, but its all a lie - they are in own silos and don't want to kick up a fuss and lose their job, pay cheque - huge scandal in UK and other countries

1:07:15

Last few months have been very difficult - started smoking again, stopped exercising, depression, self doubt, anxiety - some days better if get a bit of good news, but most of time it is a crushing weight - drinking to get to sleep - irritable, angry

1:08:55

Can't remember feeling happy, part due to Lyme symptoms, but mostly due to the situation - affects all parts of life - bloody nightmare - constant worry - affecting relationships, compounds Lyme - borderline sociopaths in high positions shown by their actions

1:10:45

GPs don't want to discuss trauma he's experienced by health care system, so can't get help for trauma - don't give up, just keep going

1:13:45 - end

 

Follow Gregory on twitter.

 

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.

Host Scott Simpson

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.

 

Support Medical Error Interviews on Patreon by becoming a

Patron for $2 / month.

Or $5 / month to be a Premium Patron and

watch the video versions of Medical Error Interviews.

 

 

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

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.

 

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

 

 

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

 

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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.

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.