Recovery is more than being told your heart is fixed. There's a mental and emotional aspect

Learning to trust her body

Maria lived 40 years undiagnosed with Wolff Parkinson White (WPW) syndrome, a congenital heart condition. Any stress would trigger her heart to beat abnormally fast. Her diagnosis and subsequent ablation procedure have set her on a holistic journey to recovery.

“Growing up, I used to have these episodes that would sort of knock me back and stop me in my tracks, but because I was asthmatic it was always put down to that.”

The episodes got worse as Maria got older. As a teenager, she remembers saying to the doctor that she thought her asthma had changed somehow, because her heart felt like it was being crushed. “Instead of not being able to breathe, I just felt weight like concrete, sitting on my chest.” Other times, she felt cold and clammy, “often it was like things were going in slow motion”.

Despite her comments to the doctor, and several visits to the emergency department (ED), Maria’s condition went undiagnosed. The subsequent episodes, and the anxiety that went with them, were to have a significant impact on her adult life.

Avoiding triggers

Maria spent years avoiding potential triggers that might cause stress, mentally or physically, in order to prevent an episode. “I couldn’t watch scary movies, even one of my comedy TV shows was off the menu after an episode nearly sent me to the ED.”

She developed breathing exercises to help keep herself calm. “I had to avoid everything that caused me stress, because I just knew it made me feel sick.”

Maria managed to pass her driving test, but a car accident undermined her hard-won confidence when it set off an episode. “I physically couldn’t drive. I was too scared to have that feeling happen to me again while I was on the road, and I didn’t feel safe, for myself, for my passengers but also for others, the public.”

Blacking out, unable to talk – the worst episode

The turning point finally came at the age of 40. While working at a high school, Maria was required to assist on a class trip to a laser tag event – something she would have usually avoided at all costs. The competition, combined with the exercise and stress, “did its magic”, and brought on one of the dreaded episodes.

Maria tried her breathing exercises, but she continued to feel worse. Back at school, she blacked out on the walk from the carpark to the classroom. “I thought, I’ll just have a wee sit-down for a minute and do some breathing, and then I woke up on the ground unable to talk.”

Maria struggled to the school sick bay, where staff called for an ambulance... 

“I passed out and went into that phase where you say goodbye and replay that last day, I was going off to this lovely warm, light beautiful place… and then I woke up in the emergency department after I was defibrillated.”

A diagnosis – at last

When Maria came to, hospital staff were busy asking her husband if Maria had Wolff Parkinson White syndrome, something neither of them had never heard of before. Finally she had her diagnosis.

It was a relief for Maria to finally have a name to put to the condition that had haunted her all her life. “A lot of people thought I just had an anxiety disorder and I should just get over it, so it was validating, because I knew that something was wrong with me all along and finally I got some answers.”

“Overnight, everything changed for me. I became this normal person again.”

Maria was told she had extra electrical pathways in her heart, allowing it to beat fast and abnormally when stressed. With her heart condition identified, doctors could do something to help. A catheter ablation procedure would be able to fix it.

However, there was a long recovery ahead of Maria. “I had to wait a very long time for the surgery and I wasn’t able to do anything during that time, I couldn’t even go to the washing line. So I lost a lot of my physical health and then I had the surgery, and it took about a year to recover physically.”

Her family, friends and workplace were a great support during both the waiting and recovery. “It was all their efforts that got me back – even my elderly father babysat me as I was not allowed to be alone while on the ‘urgent list’ for surgery.” Some of Maria’s good friends took her on holiday over Easter, to give her husband a break from shouldering her care, house-keeping and the family – all while holding down a full-time job. Maria was very grateful, “This kind of event really shows you who your great friends are.”

Overcoming the fear of another episode

Maria found that she needed a holistic approach to her recovery. Having lived for so long in fear of an episode, and dreading stress, she has spent years working through the psychological side of her recovery.

“I think even my cardiologist really didn’t get the whole psychological impact of it.”

Despite having worn a Holter monitor for a week to prove her heart was now working correctly, Maria was too anxious to sleep for some time as previous episodes replayed in her mind. “I can remember all the really significant ones, I can see all them in my mind’s eye, like when I was little, where I was and how I dealt with it.”

“I still felt really anxious that it was going to happen. I was still terrified to do certain things because it triggered memories.”

“I had to learn to trust my body. Without having any actual clinical help or support, I guess it was just a matter of time and determination to trial things out gently. No one pressured me, which was quite good.”

Overcoming anxiety – driving

A key milestone in Maria’s recovery has been overcoming her anxiety about having another episode while driving. To begin with, she struggled to get into the front seat of the car. “Just sitting behind the wheel, the anxiety was enough to set me off. I couldn’t even touch the steering wheel.”

It’s taken some time, but Maria has been lucky enough to find an “awesome” driving instructor, who has helped to re-build her confidence and get her back behind the wheel. “Now every time I drive, I’m amazed. Six years later, I’m still amazed, but every day, I’m doing it.”

 

Shared August 2017

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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16 Comments

  • Katherine 4 February 2024

    I have been diagnosed with Parkinson’s disease since 2010, by the VA. I found that none of the current medications worked (side effects for me). I currently take pramipexole dihydrochloride three times daily. It isn’t working well neither. I still have some tremors. Was on carbidopa levodopa but only lasted 90 minutes then wore off. Down side of carbidopa is after reaching max dosage it will no longer give relief, nothing was working for me and to make matters worse there has been little if any progress in finding a reliable medical treatment for Parkinson’s disease without spending thousands of $, finally this year I was introduced to Natural Herbs Centre and their effective Parkinson’s herbal protocol. This protocol relieved symptoms significantly, even better than the medications I was given.. No case of Parkinson’s, hallucination, weakness, muscle pain or tremors. I’m strong again and able to go about daily activities.

  • Alex 20 September 2023

    I was diagnosed with wpw on October 2021 and have never hear of I before. I went to the Emergency room for an asthma attack and the doctors were giving me oxygen to help me breathe better, I felt like they were giving me too much cause my heart started to race really bad and I felt a horrible disconnect from reality. All I remember was hearing the beeping of the machines and doctors talking, I panicked even more when they said they had to stop my heart so they could reset it if it didn’t stop beating so fast and it was only rising up from there. It ended up going down a bit. Since then I’ve been having horrible episodes, it felt like I was always disconnected from reality and I’d feel cold and sweaty, I’d shake aggressively and felt so so tired after every single one of them. Eventually I had surgery for it and I thought finally it’s over but it wasn’t. I had to get another surgery for it, I still to this day live in constant fear that it’ll come back, I’m always expecting to get an episode. The mental toll it has on you feel so real, living in fear over something that already gone is something that no doctor could understand or begin to support anyone especially cause it’s so rare, you’d think it’ll never happen to you. I’m 21 years old and they diagnosed me when I was 19

  • KT 12 June 2023

    Thank you for posting this article. My 17 year old daughter has had to endure some chronic episodes of WPW syndrome last year when her stress levels were severe and life for her was quite demanding. It was her first time living with her father because I had to relocate for a job. She didn’t want to go because of her friends and the safety net of stability at school. Home wasn’t so great so she’d avoid it as much as possible. When she’d tell her dad she felt severe chest pain or rapid heartbeat. He’d just say “get over it” and accused of her of being attention seeking. When my daughter’s grades and physical appearance as well as her emotional safety was compromised, her symptoms worsened. I finally demanded she come live with me. I knew she wasn’t well,  it after several doctors and trips to the ER due to dizziness, fainting and unexplained anxiety, I kept pushing to seek answers. They first said she had anemia, but that was just a byproduct of her low blood pressure and lack of wellness and nutrition. I continued to push for more testing as she was not getting better, after 3 months of digging, she saw the appropriate specialist, a Pediatric Cardiologist. He then monitored her heart, and as a result, came back that she had WPW, AVNRT, and Tachycardia. From what I read, the exacerbation came from her acute and chronic stress levels. So it wasn’t just “in her head”. I lost my job to take time off for her, but I have no regrets. I’d do it all over again to keep my daughter alive and healthy. She just had catheter ablation and they froze a portion of her heart. It’s been 2 days now and she’s been sleeping all weekend. It’s refreshing because her severe anxiety was making her have hyper insomnia. Rule of thumb, keep stress levels low, no caffeine or any stimulants.

  • LilyM 13 May 2023

    I also was diagnosed as WPW recently. I thought it was an anxiety thing so I was seeing a therapist hoping my symptom will improve but the heart palpitation was happening even when I was fully relaxing so I kept thinking it must be something else but couldn’t figure out what. I was initially upset and shocked that I have to get a catheter ablation done as I am young and healthy in my early 30s. After reading your story and everyone’s comments, I felt relieved that I am not the only one who struggled with this symptom / had asthma / mistaken by my anxiety and lived with it for over 30 years. It definitely got worse as I got aged. I can’t wait to get a surgery done and live a normal life again. Thank you for everyone who shared your stories.

  • CM 30 January 2023

    Finally, I think i have a name for this weird feeling in my chest. I’ve seen multiple cardiologist since I got my first palpitations about 4 years ago. Been also through multiple tests, everything came back “normal”. But deep down I knew something was wrong. I exercise regularly mostly lifting weights and never have an episode, on the contrary this palpitations and fluttering appear suddenly at rest. I remember my first episode while vacationing, go figure lol.  Last Friday driving home from work, I got a minor discomfort in my chest and stopped by on an emergency care place. Long story short I ended up at the ER. Everything was perfect except for the EKG. The doctor said the patterns indicated I possibly have a condition called WPW. And the reason why all the previous exams were normal was because during them I never actually had an episode. Now I have to see a cardiac electrophysiologist. I’ve been reading a lot during this weekend about this syndrome and sure enough everything indicates I have this genetic condition. Now I have to say goodbye to my beloved coffee and my occasional gin & tonic lol.

  • Khin 17 October 2022

    I was diagnosed with wpw syndrome, when I did my routeing medical check up last two years. The cardiologist prescriped me some medication.But I felt side effects and no more took these medicines.Now I’m just fine and try to avoid the risky things.I still consume coffee 3 cups (not strong ones) a day .

  • Kerry 31 August 2022

    I have been diagnosed with Parkinson’s disease since 2010, by the VA. I found that none of the current medications worked (side effects for me). I currently take pramipexole dihydrochloride three times daily. It isn’t working well neither. I still have some tremors. Was on carbidopa levodopa but only lasted 90 minutes then wore off. Down side of carbidopa is after reaching max dosage it will no longer give relief, nothing was working for me and to make matters worse there has been little if any progress in finding a reliable medical treatment for Parkinson’s disease without spending thousands of $, finally this year I was introduced to Health Herbs Clinic and their effective Parkinson’s herbal protocol. This protocol relieved symptoms significantly, even better than the medications I was given.. No case of Parkinson’s, hallucination, weakness, muscle pain or tremors. I’m strong again and able to go about daily activities.

  • Maria 7 May 2022

    I would love to talk further and support you all better. It is as cathartic for me as for you to hear your stories. Even though I am 13 yrs past ablation it still is a big part of my life. I have recently caught Covid and up until then was quite sure my time was up. I flew through, heart and lungs wise so yay to vaccination! I have set up a Facebook page and I would really love you to join. I searched long and hard for support (esp locally) when I really needed it all those years ago and there really wasn’t anything out there. I also have lots more to tell….like after I gave birth to my 2nd child, whoa did that midwife not get what I was trying to say!
    https://www.facebook.com/groups/1790579300970441/
    The Heart Foundation is a lifeline to so many so spread the word. I have volunteered for the street appeal for a number of years as a way to help (although Covid has put a stop to that for now), fingers crossed for next year!

  • Gem 22 April 2022

    I am too, was diagnosed with WPW in october 2021. It is really hard to live everyday with unexplained anxiety. I always feel weak and unable to do normal things because any kind of stress can trigger the symptoms. I really find it difficult as a teenager (19) with WPW. I used to dance, run, walk, and sing. But now my heart contion hinders me to do it.

  • Sharon 23 March 2022

    Apparently I have had a very late diagnosis of WPW Syndrome.  I am now 75 and started having fluttering symptoms Aug 2021.  I had pneumonia as a weeks old baby (my mother smoked) and I grew up with bronchitis and asthma. Most recently I ended a very stressful marriage of 12 years. Five months after first noticeable episode I was undergoing cardiac ablation for Supra-ventricular Tachycardia when my WPW was discovered.  My Electro Radiologist fixed my problem and told me later what I had.  Was I shocked and having no more episodes, at my follow-up, my doctor said I had no further need to see a Cardiologist.  Thank You Lord!

  • Denise 11 March 2022

    I too have WPW… just diagnosed during 2020 of all years. I was 38 years old at the time. I can relate because all my life, I thought my palpitations were due to anxiety from being around people. So I spent a large part of my life purposely being alone. Nobody knows what we go through with this condition. I pray every time I get in my car to drive. My biggest fear is fainting while driving. And don’t get me started on the fatigue. I would get home from school and have to take a nap. Then go to bed at 10pm and still wake up and still be tired… I’ve learned some things to try to manage the symptoms but the emotional toll is real…

  • Meg 13 February 2022

    I was diagnosed with WPW in middle school after my school’s physical had a cardiac foundation with ECG test us as well. I told doctors about my symptoms but was shrugged off as asthma, digestive issues, etc. until my ECG. After my ablation, I have been able to live a healthy life and haven’t had to see a cardiologist in years. I fully encourage everyone to get an ECG as WPW can go unnoticed. Many foundations make it very affordable to have kids screened as well.

  • Robin 8 November 2019

    I was diagnosed with WPWS in 2016. I, too, was diagnosed with anxiety and Bipolar. I now know that isn’t the case. I am wondering if anyone else notices that before, what I call an episode, comes on if they notice their thinking is clouded? I noticed that the episode that landed me in the hospital and the one I had last month, I felt really confused and almost disconnected.

  • Leanne 28 October 2018

    Thank you for your story. I am 41. I can really relate. I was diagnosed with WPW officially 8 months ago. For years I have been avoiding so many normal activities that have triggered these horrendous and frightening symptoms. I have found myself in tears on so many occasions because I know that mentally i should be more than capable of coping. It has set me back massively in my work and career prospects. I hve been examined for everything including mental health issues. Time and again I tried to explain that I felt the problem was my heart and time and gain i was sent home with stress, anxiety and depression medications all of which i was highly intolerant to (now known to br due to WPW.) I was experience pain in my chest and left arm continuously and exhaustion on normal tasks again my gp was going to put it down to stress but carriied out an ECG just to be sure and low and behold it showed up on the ECG.  I have also been diagnosed with fibro myalgia which cant be treated until they do ablation. I really dont think that professionals recognise just how difficult this condition it to live and work with. I am still struggling to hold down my full time job. My main stress is currently triggered by the fear of being unable to pay my bills.

    I don’t do anything I used to enjoy.

    So thank you again for sharing your story. I hope when I recieve albation that my quality of life will improve.

  • Maria 10 October 2017

    Kathryn, thanks for your reply! I am so pleased this has helped you. Yes the anxiety is hard to get your head around especially after so many years. It is a very real and ongoing struggle esp without professional support. I have set up a facebook page if you are interested in joining. I know it would have helped me so much at the time.
    Wolff (Wolfe)-Parkinson-White Syndrome (WPW) Aotearoa

  • Kathryn 21 August 2017

    I really identified with Maria’s story as I too had Wolf Parkinson White undiagnosed for nearly years with 20 years of fear and multiple trips to the Hospital when my heart went crazy. When I was finally diagnosed and had the ablation procedures- it took 3 procedures to fix me- I was also left with terrible anxiety which still haunts me 14 years later. Thank you for sharing your story Maria- I feel better knowing there’s others like me out there.

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