When I connected with Tracey Wilson about her experience with medical error and she told me that a surgeon had unknowingly left a piece of wire in her heart, I squirmed a wee bit at the thought of it, and imagined the wire was maybe an inch long.

Then Tracey sent me a picture of her holding the wire, her arms were outstretched on either side of her, gripping a wire that measured 42 inches in length. After I picked my jaw up off the floor, I knew I had to interview Tracey to find out how this happened and how she managed to survive what is called in the health care sector as a ‘never event’, as in ‘it never should have happened’.

As it turns out, Tracey’s medical error experience of having a long piece of wire accidentally left curled up in her heart, was not a one-off event. As surgeons tried to remove a piece of the wire, they messed up some of her lymph nodes giving Tracey nasty side effects. 

Then they tried to correct that error, and triggered lymphedema and now Tracey’s legs have lymph fluid pooling in them, causing swelling, loss of mobility and pain.

As Tracey says, ‘it has been a series of catastrophic events’.

SHOW NOTES:

  ***Disclaimer: Settlement of a medical malpractice case in West Virginia is NOT an admission of guilt. West Virginia is a 'no fault settlement' state.*** 0:05:00 Tracey grew up in Bucks County, Pennsylvania - in a small town called Sellersville - everybody knew everybody and Tracey's family had been there for generations - Tracey says she had an average childhood, but spent some time in foster care, but for the most part of fairly happy kid - Tracey did not like school, she had buck teeth and kids were cruel - she was pretty much a loner, but loved art 0:06:00 Tracey went to college, it took her 7 years to graduate, but she was determined - her mother raised 3 kids on welfare and Tracey did not want to fall into that trap - she wanted to make something of her life - she went to college for biological sciences so she could pursue animal husbandry 0:07:00 In 2016 Tracey started to have fainting spells - one of the while she was driving - she was hospitalized for 5 days for testing - her primary care doctor said he was sending Tracey to a cardiologist to be assessed for vasovagal syncope and bradychardia 0:08:00 Bradycardia is an exceptionally slow heart beat and it will cause low blood pressure - vasovagal syncope is a malfunction of the vagus nerve - 2 symptoms are: fainting as the sight of blood, and narcolepsy - they are triggers that cause loss of consciousness - so figuring out the trigger is important 0:09:00 Tracey was sent to cardiologist Dr Demede - Tracey had been wearing a Holter monitor that constantly recorded her heart function and the doctor could download the activity - during this Tracey was on a medication called purolo, a medication to control heart beat, but it made Tracey heart stop for 2.3 seconds - Tracey was asleep and did not notice, but the next day she got a frantic phone call to come immediately to the hospital - Dr Demede was pushing hard to put a pacemaker in 0:10:00 But one of his colleagues thought the heart stopping maybe due to the medication - so they took Tracey off the medication and monitored her heart - it turns out it was probably the medication that made her heart stop - Tracey was against a pacemaker because it represented that her heart was not able to do its job - but it didn't explain her fainting spells 0:11:00 They did some other tests, but Dr Demede was very determined that a pacemaker was the solution - Tracey spent a year resisting a pacemaker - she was fitted with an internal heart monitor in her chest that monitored her at all times, it had a constant upload - it would perhaps show what Tracey's heart problem was about 0:12:00 About 1.5 weeks later Tracey started to feel very, very tired - she called the doctor's office and asked them to check her heart monitor results - they immediately called her back and told her to come into the office right away - when she got there, the doctor showed her the EKG read out and said 'if you don't get a pacemaker now you are going to die' - at the time Tracey's son was having health problems and she couldn't resist the doctor any more - so they scheduled a surgery to implant a pacemeker in June 2017 0:13:00 Tracey wasn't feeling any better after the operation - she had a friend who was on his 2nd pacemaker, and she compared notes with him - Tracey was actually feeling more tired and weaker, and that not what had been the experience of other patients receiving pacemakers, and by Dr Demede said she'd feel a lot better 0:14:00 Tracey had been told she would feel like she was running on an 8 cylinder engine after the operation - but Tracey had complications - a few days after surgery she was throwing up blood and had to go to the ER - she also had several infections at the incision point and that needed draining - during all this Dr Demede did not seem concerned, he was placating Tracey 0:15:00 After about 2.5 months Tracey was sick and tired of feeling sick and tired, and felt like Dr Demede wasn't listening to her - she asked for all her medical records so she could get a 2nd opinion - she went to her friend's electrophysiologist, they are cardiologist with extra training in these types of devices - Dr Levin at the University of Virginia - Tracey was in a lot of right side pain and an ambulance had to transfer her to the meeting 0:16:00 Dr Levin reviewed her medical file told Tracey 2 things: one -- you don't need a pacemaker, there is nothing in your medical records to indicate you need it --- and two, you've got vasovagal syncope --- so Tracey had 2 needless operations to implant devices attached to her heart 0:17:00 Dr Levin did a tilt table test on Tracey to determine if she had vasovagal syncope - they strap you onto a steel table and tilt the table to try to trick the brain into duplicating the same symptoms - Tracey got very dizzy and almost vomited, so she was positive for vasovagal syncope 0:18:00 From her medical records, it doesn't look like Dr Demede ran any tests that would determine vasovagal syncope - Tracey went to look for a lawyer - Dr Levine could operate to take out the pacemaker and heart monitor - that was set for early December 2017 0:19:00 But Tracey was sick with a bad sinus infection and they couldn't operate that day - so they re-scheduled to March, but it would be by a different doctor - so Tracey ended up at the University of Virginia - they had a theory that one of the leads in the pacemaker was broken, and that's why Tracey had pain because it was periodically shocking her, and it felt like a baby was kicking her 0:20:00 Waiting for the surgery, Tracey contiued to experience fatigue and intermittent shooting pain in her right side - in prepping for the surgery, they did a CT scan 0:21:00 They saw something they did not expect - during the pacemaker surgery, they use an instrument called a guide wire, it is to place the leads on the pacemaker - it has a handle and a long snakey wire, called a J-tip guide wire - sometime during that pacemaker surgery, the wire broke and was left tangled up in Tracey's heart and down her right side to her kidney 0:22:00 As best as they can determine, when the wire broke, it followed the blood flow to get tangled in her heart with the end entering her right kidney vein 0:23:00 It looped through her tricuspid valve in her heart and caused damage and had to be repaired - first Tracey's husband got a call to let him know what they found as Tracey was in a meeting with the anaesthesiologist - when Tracey saw her husband he was 'white as a sheet' 0:24:00 Tracey's husband pulled her out of the meeting to 'talk to you right now' - he told Tracey but it did not make sense to her, she thought she was being 'punked', somebody was playing an elaborate joke on her - it is still hard for her to understand how something like this could have happened - yes, she felt vindicated in why she had felt so sick 0:25:00 Tracey then had to have 2 surgeries - one to remove the pacemaker and the heart monitor, and another to remove the wire - but back in November when Tracey was having back pain and a neurologist had done some x-rays - the radiologist had seen the lower part of the wire 0:26:00 The radiologist sent the scans and a note to Tracey's primary doctor saying there was a wire in Tracey - the doctor did a few non-specific x-rays but concluded it was a defect in the x-ray machine 0:27:00 Because the wire had rubbed against the inside of her heart, it had healed into her heart and would have to be cut out - Dr Teeman of University of Virginia actually did the surgery - they were able to get most of the wire out and repair the heart wall damage with a plastic device called ring angioplasty to support the heart and prevent it from leaking so badly 0:28:00 They did the operation by going in through Tracey's ribs on her side, deflated her right lung, and accessed her heart - it was to cut down on the risk of infection, but it didn't - within a week Tracey was back in surgery to clean out the infection and start over 0:29:00 Because of that she was on heavy duty antibiotics and kept in the hospital for nearly 2 months - but they couldn't remove the bottom 3 inches of the wire, because Tracey would start bleeding heavily - so they sutured into the wall of the vein and left there - any time you have metal in the body, there will be particulate shedding 0:30:00 The guide wire was never intended to be left in the body, so she's still trying to find out exactly what it is made of - so its toxicity is unknown 0:31:00 Like other states, West Virginia has a cap on the amount a harmed patient can receive in a medical malpractice suit of $250,000 - or $500,000 if the injury is catastrophic 0:32:00 Tracey says the law around medical malpractice is a problem - there is no way for the public to be aware of the specifics of a doctors past errors - someone had found Tracey's lawsuit and posted the facts publicly 0:33:00 So any one who googles the doctors name will see that info as well - Tracey is still angry against the state because there is almost nothing from preventing this happening again - there is no accountability or assurance steps will be taken by the hospital - there is the state Board, but they take all kinds of medical complaints, not just 'never events' like Tracey's 0:34:00 They don't have the capacity to investigate all the medical errors, even 'catastrophic' ones like Tracey's - because the medical expenses and legal costs are so high, and the cap on settlement is so low, most lawyers in West Virginia won't take a case - the first 2 lawyers Tracey approached turned her down 0:35:00 When Tracey first told Scott she had a wire stuck in her heart, he imagined something 1 maybe 2 inches long - but it is actually 42 inches - Tracey arms are outstretched to show how long it is - she cannot understand how they could have forgot it - not just doctors, but others that are charged with monitoring fail safes 0:36:00 There were so many people that day that didn't do their job - Tracey has a deep mistrust of the medical profession - she questions everything now 0:37:00 But Tracey doesn't see it that way - Tracey says the anticipation of side effects from multiple medical errors is disturbing - Tracey hoped her husband comes back soon and retires and she remains relatively healthy for a long time in spite of it all 0:38:00 Tracey now has stage 2 lymphodema in her right leg, and starting stage 1 in her left leg - stage 3 is commonly known as elephantitis - the lymph fluid causes excess swelling and loss of mobility - and at times very painful - Tracey has had cellulitis because of it, which is life threatening - it has been a series of catastrophic events 0:39:00 Tracey feels like her life has prepared her for this - she has gotten used to hardships - just this past year, her son died unexpectedly of cancer and a week later her husband got deployed to Iraq - Tracey says she absorbs things and goes on - and you can't fight everything, sometimes the situation is what it is 0:40:00 Tracey does have days when she wants to throw things at the wall because she's so angry, but most of the time she tries not to dwell on it - Tracey's husband, a Marine, thinks she is the strongest person he's ever met 6:52:00 But Tracey doesn't see it that way - Tracey says the anticipation of side effects from multiple medical erros is disturbing - Tracey hoped her husbanc comes back soon and retires and she remains relatively healthy for a long time in spite of it all 0:42:00 Tracey is not sure when her husband will return home because of the COVID pandemic - Tracey hopes the medical system will start reporting serious medical errors, and a process in place for patients - and how can you make an informed decision if you don't have all the facts 0:43:00 Tracey says there needs to be a reporting agency - when she did research, there were 49 states have a reporting agency of some type that tracks the medical errors and sees that something is done - one state has nothing, it is a totally voluntary system, they are left to police themselves - that is Tracey's state, West Virginia 0:44:00 And that goes a way of explaining how this happened to Tracey - there is no accountability, and because there is a settlement cap, doctors know how much a settlement will cost - Tracey believes catastrophic never events she be exempt from the settlement cap 0:45:00 Tracey has reached out to a couple of congressman and politicians but they are involed in COVID so she doesn't expect to hear anything soon - Tracey will probably never know whey they left the wire in her body because West Virginia doensn't require an explanation - she has to make peace with it and go on with the rest of her life - Tracey plans to get a Phoenix tattoo over the scar, appropriate since she's come back   Connect with Tracey Wilson: Facebook: https://www.facebook.com/tracey.wilson.315428   Info on West Virginia caps and Malpractice Insurance: https://www.alllaw.com/articles/nolo/medical-malpractice/laws-west-virginia.html

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I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.

If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com 

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.

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Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

 

Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.