Wolff Parkinson White, a close brush with death and 'Can Wolff Parkinson White come back?'

Wolff Parkinson White, a close brush with death and 'Can Wolff Parkinson White come back?'

Wolff Parkinson White syndrome is a fairly rare thing. Most people wouldn't have a clue what it was if you mentioned it to them. Yet it affects roughly 2 people per 1000 worldwide. I have Wolff Parkinson White syndrome. Here is my story, where I also answer the big question, can Wolff Parkinson White come back?

ECG showing WPW syndrome. Image taken from Wikipedia.

Since a child I experienced problems with my heart. As a little girl aged six I would say "Mummy I have butterflies in my chest. My heart is jumping." Like any responsible parent, she took me to the doctors and got the usual 90's doctors spiel "She will grow out of it. It's just a phase. Ruth is only young. She is probably just getting heart burn..." So my Mum reluctantly listened to the doctor. It carried on and on. In my teen years I used to tell my Mum about "the butterflies near my heart." One doctor said "You have a fast pulse but that is normal. You are a teenager with hormones." So I went home thinking it was normal. Then at 15 the big thing happened. I collapsed. I ended up seeing my GP and I ended up in hospital where I nearly gave my Mum a heart attack!. Whilst I was in hospital I saw an amazing on-call doctor called Dr. B. She was not happy about how I'd been fobbed off. She wrote a letter to my GP and discharged me from hospital with orders to see the GP immediately. My GP agreed that my ECG readings were wrong, and I needed to see a cardiologist.

In the beginning of 2008, my final year at school, I got to see a brilliant cardiologist called Mr H. He agreed there was something wrong but he wanted more data before doing anything. At the time a fairly new device had been released into the cardiology world called a reveal device. Mr H explained that this would be fitted near my heart, and would take constant readings. This reveal device was the size of a USB stick! If I had an attack I had a control to set off the ECG to catch the palpitations, or whatever was happening to my heart. The reveal device was meant to only be in for two years... though the resulting wait may be to do with me doing this during the procedure to fit it!

A reveal device - sometimes I felt like a computer!

Four years and hundreds of readings later, I saw Mr A, a colleague of Mr H. Mr A looked at all my reveal data, which took 30 minutes to get a good picture! After reading them he came to a decision. "Ruth we need to see what is causing the incidences of tachycardia and sinus tachycardia." This involved me going in for an operation called a catheter ablation.

What is a catheter ablation?

A catheter ablation, is where a person goes in for surgery. They fit a catheter at the top of each leg in the femoral veins and a cannula in your arm or hand. They then use a probe that goes up through the catheter and up through the body into your heart area. The cardiologist examines your heart with the probe and via imaging, looking at a screen to see what is going on. The patient can see the screen too, which was kind of fun! Unless you're one of the lucky people that get's general anaesthetic anyway... If they find a problem with the circuit in your heart they use a heated probe to burn out the affected circuitry. They ablate the circuit away, hence the name. During the procedure you usually have adrenaline administered to induce your symptoms you have been having to get an accurate image before they start frying... although as you will find out not the best idea..

My date for the operation was set for August 2013. I really thought I would be rid of the problem... whatever it was.

In August 2013 I arrived at the cardiology unit feeling nervous and shaky. I had my own room and bathroom, because, at 21 years old, I was the youngest on the ward.  At 2pm I was taken down to theatre.

The surgery was being conducted by Mr H. The theatre was so oddly set out. There was the bed, then three screens above the bed. Then within the theatre there was a little room. I couldn't see in as it was blacked out. I jumped out of my skin as a voice said "Hello Ruth" over some speakers, dystopian sci-fi much! The blacked out room turned out to be a technician's area and Mr H came out of the darkness and asked how I was feeling. "Nervous, but positive." Mr H just patted my shoulder and instructed the nurses to transfer me off my hospital bed and onto the theatre bed.
Once I was on the bed I felt so shaky, and he told me to calm down a bit. The catheters were inserted into the inner sides of my thighs and Mr H put a metal sheet across my body so he could see what was going on.

Mr H attached drip that had adrenaline in which was meant to get my heart pumping so he could see what was going wrong... Mr H inserted the probe, and I watched the screen. My heart beat away. Mr H examined my heart for a while. All of sudden he said "What the..." and ran into the technician room. There was a nurse there who was a couple of years older then me. I was so scared so I asked to hold her hand. She held my hand all through the surgery bless her... I could muttering into the speakers "it makes no look... how can that be.." Well that gave me real confidence! Mr H ran back in and put on a second bag of adrenaline. The probe when back in, by this point I was feeling tired, and I said in an exhausted voice "What is going on?"Mr H didn't answer me, he continued to move the probe about and examine my heart. He finally answered "you heart isn't responding to the adrenaline, and I have found part of the problem with the circuit. He then put the third bag of adrenaline on the drip, and continued to examine my heart, and made lots of tutting noises as if he was confused. Robbie Williams' "Candy" was playing in the background...

Here's a cute picture of a puppy in a teacup before it gets heavy!

"Mr H, please let me sleep. I'm tired." Mr H started to panic "No Ruth, you must stay with me, come on..." All the sounds went quiet. I knew something was wrong. I'm too young to die...aren't I?

I was standing at the bottom of the bed. Complete peace. I was free of the wires, the beeping, the tutting, the metal plate. I was free. What was this freedom? I could see all the medical staff panicking, the technicians running out of the room. They were getting the defibrillator out..."Ruth you have to go back." Complete silence "Go Back."

My eyes snapped open. "Well we lost you there... but you are back with us." I felt so groggy. Mr H then said something that at the time didn't mean much because I was tired.."You can't have the pacemaker, you had a heart attack." At the time they meant nothing... I just wanted the surgery done.

Mr H inserted the probe, this time he found the problem. Mr H ablated the circuit. I have to say it was one of the most unpleasant feelings, I could feel the probe going up my body, slithering up like a snake, hot and looking for the circuit. When Mr H hit the circuit with the hot probe I let out a gasp. It felt so hot and unpleasant. The unpleasantness carried on for about ten minutes.

Once the ablation was done, he took out the reveal device. Then the nurses brought me back through to my room. For some reason Mr H had disappeared.
The nurses instructed me to stay laid flat for seven hours... My Mum came in, and was kissing my head. I found it odd that my chest and inside of my legs were covered in iodine!
I couldn't really talk because I was in pain, but Mr H soon appeared... with his bicycle. It was the weirdest sight. Mr H was wearing his bicycle helmet and knee pads over his scrubs!
Mr H said "Hello Mrs S, everything went to plan, well kind of. We had a slight mishap. Ruth had a heart attack."
My Mum gasped "Heart attack! What!? How?"
Mr H "Well you see with her heart being wrong, and too much adrenaline being pumped through her veins it put a lot of strain on her heart."
I thought my Mum might flatten him so I asked him a question.
"Mr H what have I got?"
Mr H "You have Wolff Parkinson White Syndrome. It's where you have two circuits where you should only have one."
This was where I asked the question that was the really important one.

Can Wolff Parkinson White come back? 

Mr H said "Sadly Ruth, we didn't get rid of the whole of the second circuit, because it was joined to your natural circuit, something I rarely see. Now in answer to your question Wolff Parkinson White can come back, so even if we got rid of that circuit it could come back, however, with you, you still have Wolff Parkinson White. We can never get rid of it. You will be on medication for the rest of your life. I am sorry about the heart attack, because of that it stopped you having the pacemaker, which would have helped."
I began to cry "Well thank you for saving my life, and thank you for trying."
Mr H came over and shook my hand, and my Mum reluctantly shook his hand. I didn't want anymore questions asked. I just wanted to sleep, and be quiet.
I was instructed to lie flat for 7 hours, but after 5 hours I stubbornly walked up and down the corridor with a walking stick. I blame my bladder.

To this day I am still at risk of another heart attack, and I am aware it could kill me, however, life goes on. I was informed by my cardiologist that I was born with Wolff Parkinson White. I did nothing wrong. My life has been redefined, and I try to live my life to the fullest. This piece has been hard to write, as it brought back memories, but writing this has made me feel stronger.

I hope when you read this, it helps answer some questions you may have about the heart. Some heart conditions you are born with, like I was. Some heart conditions can be prevented by a healthy diet, not smoking and not drinking. I am not telling you what to do. I am just stating a fact. Whatever you decide to do with your life, make sure you live it to your fullest.

Hearts - turns out they are pretty important!
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If you need any more information about heart related matters, I cannot stress how good the British Heart Foundation are. Their website is full of information and answers a lot of questions about cardiac related matters!


Earthboundstars said…
Ruth you are incredibly brave and I truly believe you are on this earth and have such a fighting spirit for a reason! You're meant to be here, growing as a person and shedding light. It's like when you go into a big messy room and sit down and start with one area, I think wherever you are in the world will slowly start to fill with happiness and positivity and wherever you go you'll spread that. You're a blessing <3
Jennifer said…
You don't know me but thank you for sharing this. I also have a heart condition (not this, something different) & sometimes it's hard to live with. But as you said, life goes on! Got to keep on moving forward. You are so brave for sharing.
Elizabeth said…
OMG! How scary! This is something on our radar with our oldest twin as he has sinus tachycardia that is almost constant when he is awake. The way doctors brush things off- especially with children and young women INFURIATES me. No one should have to suffer a delay in diagnosis just because they are young and/or female.
Thank you for the awesome comment Earthboundstars!πŸ’œπŸ’œ That made me smile so much. I will continue to fight on. I want to help people, and spread love and positivity. I feel lucky to ha e wonderful people like you in my life. ♥️😊xxxx

Thank you for your wonderful comment Jennifer! πŸ’œπŸ’œ yes life goes on, and we have to carry on moving forward. πŸ’œπŸ˜Šxxxx

Thank you for your kind comment Elizabeth! πŸ’œπŸ’œ You are completely right. I got sick of being brushed off, and then you have to be at “deaths door” to be taken seriously! I hope your oldest twin gets taken seriously, because any heart condition is hard to live with. Your whole life changes. Keep on the fight. 😊 xxx
Unknown said…
I was astounded to read this. Such an incredible story and I'm so glad that you had the courage to share it with us. So heartbreaking to hear about how the doctors treated you, but I'm glad you now have the answers you need. xx
Wow! Glad you finally got to see a cardiologist who could at least partially fix you. Hugs and love! Thank you for sharing your story and make sure to live your best life!
Aditi said…
You are brave girl I must say..You are a winner actually because I think only a winner can write such a post. You are an amazing girl. God is always there and he will be there with you.My best wishes.
Sarah Garden said…
You are very brave! That must have been really weird to be out of your body for a moment! I am glad you know what you are dealing with now and I had no idea people stayed awake for heart cath surgeries. Wow! Thanks for sharing your story.
Thank you for your kind comment Chloe!πŸ’œπŸ’œ Yeah, I will keep going. I feel lucky to be alive. 😊xxxx

Thank you for your kind comment Karen! πŸ’œπŸ’œ I will definitely live my best life! πŸ˜€ xxxx

Thank you for your lovely comment Aditi. πŸ’œπŸ’œ I believe God gave me a second chance. I will always push on! πŸ˜€ xxxx

Thank you for your kind comment Sarah.πŸ’œπŸ’œ It was weird being out my body! Yeah I know, I couldn’t believe I had to stay awake! πŸ˜€xxxx

mccindy72 said…
Hi Ruth!
You've really had a scare early in your life. It sounds like you've faced it with strength and tenacity.
Your story brings back memories of my own son's experiences; he has a heart condition that showed up when he was in high school. He was rushed to the emergency room with a pulse over 200 bpm, and had multiple tests. He ended up having an ablation of an extra trigger in his atrium as well. He still has an occasional atrial fibrillation, but as you say, it's something you learn to live with and face , hoping for the best.
Hey Cynthia!
Thank you for your very kind comment! πŸ’œπŸ’œ I hope your son continues to be okay, and doesn’t experience too much with his heart. Your son sounds strong like you. You are a very strong person! I will keep going! Lots of love xxxxx

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