Evidently having a doctorate in physical therapy and working in the health care field does not protect you from medical incompetence, arrogance and errors.
When Dr Jill Murphy went to the ER with potential stroke symptoms, the staff called the neurologist to examine Jill. But he refused, so the staff sent Jill away without a diagnosis, but with instructions to buy some baby aspirin.
This was the first in countless medical encounters where Jill was disbelieved, dismissed or denigrated. Meanwhile, she continued to have countless mini strokes. Yet doctor after doctor failed Jill. They gave her a ‘conversion disorder’ diagnosis, saying her symptoms were all in her head, telling her husband that she must have been sexually abused as a child.
But Jill is a smart and determined person, and her persistence paid off when she finally - years later - got a proper diagnosis that required a heart ablation and pacemaker and life-long medication.
Now Jill is using that same determination - and lessons learned from being a disbelieved patient - to raise awareness and education among the public and health care workers and will soon be publishing her first book, Physician Heal Thy Self.
Connect with Jill:
https://facebook.com/DrJillMurphy/
Twitter: @MotionWorksPT
SHOW NOTES:
0:04:00
Jill grew up on a dairy farm in north east Wisconsin, so a big Packer fan - youngest of 3, and we were expected to work - we're German, so lots of work and lots of cleaning - lots of work on the farm, no matter how old you were - looking back it was great, I learned how to work, but as a child I would have rather been at the pool with friends
0:05:00
Jill went to Concordia University, north of Milwaukee, for Athletic Training and Sports Medicine - and Jill also got her Masters in Physical Therapy there - her father was supportive of academic and athletic pursuits
0:06:00
Jill has an amazing career in Green Bay, Wisconsin, and completed her Doctorate in Physical Therapy (PT), it was a lot of work but Jill loved learning - Jill met and married her husband, bought a house, had a first child
0:07:00
Jill had no health issues until she had started her own PT clinic, and it creeped up on her during her 3rd pregnancy - in her 20th week she had heart arrythmia and ended up in the hospital - but the cardiologist said Jill's heart rate was not 100, said she was not a cardiac case and walked out - thankfully her OB (obstetrician doctor) put Jill on medication - a beta blocker - to control her rapid heart beat - but she never got a diagnosis
0:08:00
Jill was still able to work and was teaching a 'build a better body' class - as she got more pregnant, the more short of breath she got and couldn't speak to explain the drills while doing them, so she had to stop that class - the doctor increased the dose over the summer because of the warmer weather and the increase in tachycardia Jill experienced
0:09:00
Jill was an athlete, a marathoner, active her whole life, os her resting heart rate was about 60 - but now she was getting short of breath and rapid heart rate with little exertion
0:10:00
Jill was assured that whatever was going on with her heart rate was due to her pregnancy, and once she had the baby, Jill's heart problem would go away and slowly wean off the medicine - after a few months Jill tried to wean off the medicine, but it messed with her blood pressure - Jill saw a nurse practitioner who was helpful for managing medicine, but Jill still didn't have a diagnosis
0:11:00
That was winter 2014 - Jill thought she'd have to be on the medication for the rest of her life, she couldn't workout - and she kind of gave up when the doctors weren't concerned
0:12:00
So Jill went to the nearby Mayo Clinic to see a cardiologist, who ran a bunch of tests
0:13:00
During the echo cardiogram the staff kind of rushed in and asked if Jill was an athlete - she didn't know it at the time, but she had some enlarged areas of her heart - they didn't seem worried, but a couple of weeks later they gave her a clean bill of health - that was summer 2014
0:14:00
Jill's primary physician moved, so she had to find a new GP - Jill remembers asking the new GP if there was a better solution for her heart problem so she could live a normal life, and the doctor's response was 'if you keep mentioning this heart problem, I'm going to diagnose you with anxiety'
0:15:00
A couple of weeks later Jill was watching tv and had her first transit ischemic attack (TIA), in the past called a mini-stroke, now known as a warning sign of stroke because the symptoms go away within 24 hours - as Jill watched tv her left arm and leg felt weird and heavy, she had trouble getting up from the couch and had to roll off it
0:16:00
Being a PT, she was trying to figure out what was wrong, she looked in a mirror and her face looked fine - Jill kind of knew what it was, but how could she go to the ER when the Mayo had just given her a clean bill of health, and her GP thinks she's anxious, so Jill went to bed - the symptoms were gone the next morning - she tried to read about possible treatments
0:17:00
Her 6 year old wanted to run the local 5k, so Jill ran it with her and she didn't want to quit and hamper her daughter's experience - they finished and Jill was so tired she didn't know how she could drive home safely
0:18:00
On New Year's Eve 2014, Jill had a busy day at her clinic then went to her dentist - the dentist injected Jill's gums with a pain killer and her heart started beating really fast, but it calmed down in a few minutes
0:19:00
That night after dinner Jill was very tired and went and sat down, but was too tired to read, and the numbness in her left arm, leg, face was worse
0:20:00
Jill was worried she was going to drop her 1 year old because she was so weak and tired - Jill tried somethings to bring back the feeling in her arm, leg and face - it was far worse than in the summer
0:21:00
Jill's husband took her to the ER, with 3 kids in tow - they identified right away as a code stroke, so they did a complete work up - the doctor congratulated Jill on 'selecting' their hospital to come to, as they were a certified stroke center - they did CT and MRI and other tests, but did not tell Jill what was wrong
0:22:00
Something strange also happened that night, only later would Jill figure out it was unilateral neglect, it means you don't want to attend to one side of your body - Jill spent the evening looking to her right side in the room, no desire to look left - a nurse helped Jill into a wheelchair because she couldn't walk - finally at midnight the ER doctor comes back
0:23:00
He tells Jill she can go home, but to stop at a drug store and buy some baby aspirin and take 4 of them and the symptoms will go away in 24 hours - Jill asked what was wrong, her left side was weak, she couldn't walk, but he just walked out without answering - so Jill asked the nurse what was wrong with Jill's body, but the nurse said 'we don't have any beds any way' - Jill wondered why they couldn't transfer her to another hospital, but she trusted them
0:24:00
But the symptoms didn't go away in 24 hours, Jill is still weak on her left side - Jill used to run marathons, but now after 1/4 mile her left side gets weak from neural fatigue and she has no sense of where it is in space, so she has to look where she puts her foot
0:25:00
So January 2015 was horrible - her ER form said she had a TIA (trans ischemic attack) and was to see a neurologist - 2 days later she went to see the doctor - Jill was limping as she entered the doctor's office
0:26:00
The doctor snarkily said 'why are you walking like that?' - when Jill said the notes later, the doctor reported that Jill was fine - Jill realized that reality and what doctors put in there notes were 2 different things - they wouldn't record anything that didn't fit their diagnosis - a couple of days later, Jill saw her 'headache' doctor, also a neurologist - he had known Jill for years, so knew she wasn't making up her symptoms, so he ran a bunch of tests
0:27:00
Jill had told all the previous doctors about her heart racing problems, but none of them paid any heed - Jill had a headache all of January, had a few more TIAs and a huge reaction to a medication where her throat almost closed no one could figure out - Jill couldn't really work during January
0:28:00
Jill didn't have disability insurance, so needed to get back to her business - she also kept trying to see other doctors but was given a 'conversion disorder' diagnosis - Jill had been given Topomax medication for blood pressure, but started researching its side effects
0:29:00
Jill started to have trouble reading, comprehending, thinking - she burst into tears in a McDonald's drive thru when she couldn't figure out how to order her daughter a happy meal - it kept getting worse over the next few days, she had trouble eating and chewing food - she told a doctor that her throat wasn't working, but they didn't care
0:30:00
The ER refused to give Jill a requisition to see a speech therapist in spite of their obviously being something wrong with her speech - they told her it wasn't a stroke, and told her husband it was probably because she was sexually abused as a child - Jill knew that was laughable
0:31:00
Because she couldn't swallow, she had stopped taking the topomax medicine, and her throat started to release, and she realized it was the medication causing the throat problem - but it took her about 6 months to get the conversion disorder diagnosis removed from her medical record - 'conversion disorder' is a term to describe psychosomatic, 'all in your head'
0:32:00
Jill didn't buy into that - when she stopped the topomax the symptoms of not being able to eat or swallow stopped - Jill continued to try to work, but her left side weakness tired her out quickly and she couldn't support her body without support for very long - she did more research about her heart arrythmia
0:33:00
Jill decided to drive 7 hours to a conference, in spite of her sketchy health and heart - but before she left she saw a electrophysiologist heart specialist and was fitted for a Holter monitor to monitor her heart and said Jill may have intermittent tachycardia, and off she drove
0:34:00
Over the next few months Jill gradually increased her workload and then saw the electrophysiologist again for the Holter results - it showed Jill's heart would go faster for no reason - but when Jill tried to make a follow up appointment, the doctor said she was fine and refused to see her
0:35:00
Jill continued to work on PT exercises, and started a walking program - she could still only walk about 1/4 mile before her foot started flapping - her husband took on a lot of household chores while Jill focused on recovering and keeping her business going
0:36:00
Jill saw some other neurologists, but to no avail in getting a diagnosis - she went to Mayo again, but it didn't go well, it was a poor clinical exam - then early May was a nice sunny day
0:37:00
and Jill thought 'maybe they're right, maybe its all in my head, if I pretend it doesn't exist, I can do my 2 mile run'
0:38:00
Jill made it about 1/4 mile before her left foot became fatigued, but she continued by walking - she got worse, the numbness was spreading up her left leg and slowly limped back home
0:39:00
Jill concluded that the stroke stuff wasn't 'in her head' after all - Jill was also having visual problems on her left side, running into things, it was part of the unilateral neglect - Jill went to visual therapy, but it made her nauseous sick every time
0:40:00
All the allied health professional could see Jill's deficits, but the doctors couldn't - over time Jill built up some endurance - but the day after she tried to run, her ankle hurt a lot and she ended up needing ankle surgery
0:41:00
Jill looked into the intermittent sinus tachycardia and found other tests she should have - she finally found a doctor in Iowa who put Jill on aberdeen medication, popular in Europe, recently approved in the US
0:42:00
It would reduce heart rate, without reducing blood pressure, and Jill had normal blood pressure - Jill hoped that controlling her heart rate would prevent anymore TIAs or strokes - it seemed to help, but was super expensive, 100s of dollars a month, so she was ordering it online, but it would take weeks for delivery - Jill tried to cut her dose until the meds arrived so she didn't have to pay $60 for 1 pill locally
0:43:00
And Jill had another TIA that day, so she realized her arrythmia and stroke were related - but it took forever for any physicians to recognize that - Jill saw another specialist, a breath of fresh air - he implanted a heart rhythm monitor
0:44:00
Jill was still having TIAs, still limping - the heart monitor was catching Jill's heart arrythmias - but Jill was still having them and had maxed out the dose on the medication
0:45:00
It took a couple of years for Jill to learn that a heart ablation procedure could fix the arrythmia - ablation is burning the part of the heart that is causing the arrythmia - Jill had to go through 7 doctors to get the procedure because inappropriate sinus tachycardia is the like the fibromyalgia of pain, no doctors want to see you
0:46:00
Jill had the ablation, but needed a pacemaker a week later - the ablation procedure runs a tube up the femeral vein to the heart, use their software to determine the origination of the arrythmia, and then burn out that area
0:47:00
Jill went into A-Fib during the procedure and they had to shock her to get heart beat back to normal - they found several areas on her heart for ablation treatment - Jill also had a spot on the outside of her heart that was ablated
0:48:00
Jill was hoping the ablations and pacemaker would stop the strokes, but they didn't - Jill continued to have TIAs, some scarier than others, trips to the ER
0:49:00
Jill continued to research and seek out specialists - she learned that people can have strokes before their first A-Fib (Atrial Fibrillation) - so still a grey and growing area of research
0:50:00
Jill went back to the original ER doctor - Jill was worried that others would receive the same poor and mistreatment - Jill should have been given TPA, a blood thinner that would have cleared out any possible clots - if she had been given TPA, Jill would be back running and leading a normal life - so Jill wrote a lot of letters to the hospital, but only their attorneys replied - she tried writing to their stroke committee, but no one responded
0:51:00
When you're dealing with a stroke the health system won't acknowledge, it is super hard mentally - she also didn't want people in her home town to know she was struggling because it would affect her business - Jill was trying to figure out what happened that night in the ER, why did they send her home?
0:52:00
Jill later learned they had paged the neurologist, but the neurologist decided not to come in - but the ER doctor had a good reputation, and Jill tried to figure out how this happened under his watch - so a few years later when Jill was in the ER again, this doctor is trying to figure out why Jill still has symptoms from a stroke - when she told him it was his mistake, he felt very bad and had her transferred to a better hospital by ambulance to get a thorough stroke work up
0:53:00
Jill says it was nice to see that he really cared, and that it wasn't his fault, that he had believed Jill - could he have pushed harder for TPA medication, or a transfer to another hospital, or make the neurologist come in - eventually Jill saw a cardiologist who put her on eloquist (an anticoagulant), and that with a baby aspirin has controlled her arrythmia
0:54:00
3 things are probably contributing to Jill's strokes: thick blood, a small artery, and heart arrythmia, so its not a black and white diagnosis - this spring Jill has had some right side TIAs, and now the doctors acknowledge that 5 years ago she did have a stroke
0:55:00
Jill's life before was having a TIA every other week and trying to decide 'how bad was it?' - it was not a good existence - but now she doesn't have those symptoms, her arrythmia is better, she's had some complications from the pace maker surgery - Jill has a new lease on life
0:56:00
Jill is back working - but she still has fatigue issues with her left side - she still has some vision issues which cause nausea, so she takes a medication for that - but can still only walk about 1/4 mile - Jill had to have a 2nd ankle operation
0:57:00
Jill has to use a motorized scooter for any activity that requires a lot of walking - she can't do prolonged standing or walking - its hard for a former marathoner to have to use a scooter
0:58:00
Jill says she's grateful for what she does have, it could be far worse - Jill has had to accept what happened in the ER years ago - she's learned you can't trust blindly, and that's scary, and she's in medicine
0:59:00
Jill says to push for answers and treatment - and to advocate for yourself - if she didn't advocate for herself, she'd be on disability or dead given some of the complications she's had - Jill has written a book about her experiences navigating the health care system, sharing tips and tools
1:00:00
Jill covers when she didn't get care, or proper care, or the best care, things that were missed - she's tried to go back and correct things, but you can't correct everything - Jill's attitude is to try to correct the things she can - she doesn't want to dwell on the things she doesn't have, but focus on being grateful for what she does have - and to help so people don't have her experience, especially young people with strokes - the highest growing cohort for stroke and most likely to be missed in post partum women
1:01:00
Jill is also working with cardiologists to recognize that it is not only stroke, but tachycardia to be looking for - so Jill is trying to bring something good out of something negative, making meaning out of her experiences
1:02:00
Jill has her 1st book manuscript finished, tentatively titled "Physician Heal Thy Self" - her 2nd book just needs 1 more chapter to be written - connect with Jill at DrJillMurphy.com
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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.
