It was a ten o’clock on a warm July evening. I had been called from the campfire bowl to the camp office up the hill where I helped a homesick camper and was now on my return trip. If I hurried I could be back in time for the announcements.
I slowed at the bottom of the first hill. Somehow, unlike everyone else, I hadn’t adjusted to the elevation even after two months.
It was dark and I didn’t want to get disoriented. I lined myself up with the pathway, noting the lights along the way. I stared at the first one, the largest, and started running again toward it. Somehow, the closer I got to the light, the smaller it looked. As I was trying to explain to myself how this could be, the light narrowed and dimmed, disappearing from my vision. I felt my heart racing and tried to calm my nerves. But this was different. I wasn’t nervous or that tired, but my heartbeat felt strange.
The lights wouldn’t have gone out before all of the staff was back from campfire. I convinced myself I must have taken longer than I thought so everyone must already be in bed. I turned around, deciding I would ask my roommate about the announcements later.
As I turned, I scratched my face on a tree branch. I couldn’t see anything; it was completely dark. All I could do was hold my hands out in front of me and feel my way along. But something wasn’t right. The open path that had been behind me wasn’t there. There were trees all around me, every way I turned, and I couldn’t get out. I could barely move a foot in any direction. I was tired and confused and my heart continued to beat erratically.
The clinic lights and bathroom lights should have still been on and visible from where I was. Where were those lights? I spun in a few circles trying to find any hint of where I had ended up. Nothing was familiar.
By this point tears were streaming down my face. It didn’t make any sense. I couldn’t get out of the circle of trees holding me in. I made one more effort, pushing with all my strength in each direction. I yelled out to see if anyone was near. It felt as though the sound died inches from my face. What was going on?
I sat down on the bark chip covered ground in failure and closed my eyes. I would sleep here and find my way back in the morning. Or would I?
Then I saw a glimmer of light through my closed eyelids. As I opened my eyes, I looked out across an open landscape of the lake and noticed I was sitting on a bench, not the rough ground I had sat down on.
Shaking, I stood up and turned, sure enough, the light was shining brightly, illuminating the pathway down the hill. As my heart regained a normal beat, I made my way down the open, lighted pathway and joined the staff at the bottom. I had just missed the announcements.
When I shared my story with friends, they told me I was dehydrated and to drink more. So, the next time it happened, I didn’t even think to tell anyone. It wasn’t until a few months later that I was able to put a name to my symptoms. Wolff-Parkinson-White Syndrome. Very few people have ever heard of it, and a few months ago I was the same way. It is valuable to know though, so that if you have symptoms or know someone who does, you don’t wait. I now know what it means and how it affects one’s life as I have experienced what it really means, not just the dictionary definition.
So started the speech my daughter, Ashley, gave at school yesterday. She spoke from experience, having recently been diagnosed with WPW syndrome. We are truly blessed that Ashley discovered her condition in a sports physical before the basketball season started and that, thanks to the miracles of modern medicine, she has it no more.
49 responses to “Wolff-Parkinson-White Syndrome”
I had WPW in my teens. I do not know if you have heard of Radio wave oblation/ablation. It is a corrective surgery that is done without having to open the chest. Since I had the surgery, I have not had another episodes since. It began while I was 13 and I had corrective surgery at 16 years of age.
Ashley had RF ablation done late last year. It’s quite an amazing procedure. I’m glad to hear that it’s worked for well for you.
Our son has had and ablation 3 times. First time after 1 month the problem returned. Second time it held for 6 years. He just had another one and 1 month later it has returned. Anyone have a similar experience?
My daughter has just been diagnosed with WPW. Can anyone tell me about it? Thanks Jennifer
Jennifer, I’m sorry to hear about that. Fortunately, there are multiple treatments available, and depending on the case, may result in complete recovery with no future risk.
There is a lot of information about WPW on the web, just search for it. If you need help, let me know.
Your primary source of information (assuming your daughter is a minor) is your daughter’s cardiologist. Talk to him/her to learn about the syndrome and treatment options.
My daughter Kaitlyn just turned 11 today. I spoke with the nurse yesterday and we have an appointment for November 14, 2006 and they are going to do a catheter procedure to try and make her go into atrial fib and try to correct it. I am in nursing school and we covered heart catheters just recently so I know a little about it but it still makes me nervous. Thanks for your reply, it is greatly appreciated. Jennifer
Happy Birthday, Kaitlyn!! Yeah, the ablation procedure is a little scary, but think of all the heart catheter operations on people with with plugged up hearts. This is now a relatively old procedure. Kaitlyn should be just fine.
We know a person diagnosed with WPW nearly 20 years ago. The procedure for finding the additional conduction path was a more involved process. She was in the hospital for days and had multiple procedures in the operating room where they tried to kick her heart into fib while crouched over her with defibrillator paddles ready to go.
I’m very thankful for modern medicine.
Kaitlyn said thank you and I say thank you as well, you have made me feel so much better. Thanks Again. Jennifer
WPW is a serious condition in some people. I was born with it in 1983… When I was born my heart rate was outrageously high, and I was lucky to be born in a hospital with a great cardiologist and I was propmtly diagnosed. I tolerated the condition well and took medication until I was 5 years old. Pennicillin (because my immune system was sub-par so to prevent infection) and Digitalis every day. After that I had no symptoms so I stopped taking medication. Around the age of 9 my symptoms started up with suprising force. Any physical or emotional exertion and my heart raced so fast I thought it was literally going to burst through my chest. The doctors put me back on medication. It got worse, the episodes became more and more frequent, and nothing seemed to be able to stop the palpitations. Not bearing down or holding my breath or anything. Finally one morning I had an epiode that didn’t stop. My heart raced so fast I was dizzy and when my mom and aunt pulled me out of the van in the ER parking lot I passed out and THEN threw up. They carried me inside where the nurses clocked my heart at over 300 beats per minute (thats as many beats as they could count, they told me it was actually faster and they were just making an estimate) and luckily some quick thinking on the part of the ER docs saved my life. They dunked my entire head in a bucket of ice water and shocked my heart into slowing down. After that I talked my parents into letting me have the ablation procedure. It wasn’t so bad, except I had to lay flat on my back for 12 hours following the surgery so as not to tear the stitches in my artery in my leg. This was in 1994 though, so I’m sure they have improved their techniques and whatnot since then. Okay, sorry if this has become a book. But that was my experience with WPW, since then I have only had minor heart palpitations, and then nothing that doesn’t go away in a few seconds. The only other side effect I’ve noticed is the feeling that sometimes my heart actually skips a beat or two. So, maybe some ideas for those who are wondering how to stop the palpitations (ice water DOES work!) or wondering what the condition is like from the inside.
Hi There,
I had WPW (born in ’82) and had successful ablation in 2002. Since then everything has been fine, no palpitaions. Although, sometimes when I really exert myself (long run, basketball, etc.) my heart feels like it kicks into a strange rhythm, doesn’t feel like the old palpitations – plus they would happen at anytime not just when i exert myself. I’m quite sure this isn’t normal. Have been to the hospital a couple of times and they say everything is fine. I also occasionally feel a skipping or flip flop feeling in my chest. This can happen at anytime and more recently has been pretty much hapenning every day. The skipped beat or flip flop feeling doesn’t have any other sympoms – I feel fine, except I get a little panicky.
I would like to give an explanation of my ablation procedure for the people who are interested… I’m not sure how long my procedure took exactly but I can remember alot of the things that happened quite vividly. I remember laying on a table with some doctors around me and there were also doctors in another room watching me through a glass window. – i think! I beleive they do not totally knock you out completely as they cannot achieve the heart rythym they require to perform the procedure. I remember feeling a slight tugging feeling and turning my head to the left to see a small monitor. On the monitor was a black and white display, I could see my heart beating and the wires were being manouvered into each of the chambers. Once postioned correctly, they excited my heart, making it beat fast. When they located the accessory pathway, I heard them start counting down from 30 seconds. – I think. Then I felt a pressure inside my chest, it built up as they counted down. Once they had finished counting down, I felt a huge amount of releif and I heard the doctors cheer and clap. I knew it was a success! The whole time i was drugged on an opiate based medication. I remember talking to the doctor closest to me as they wheeled me out of the operating room. We had a discussion about an Australian Rules Football player who also had the same condition and was successfully treated (He is still competing to this day! and is quite a good player). He also explained to me that there was a young girl who they operated on before me. He ablation was not a success as her accessory pathway was located in her right ventricle and it was a risk for them to access it as they may damage the AV node and then she may require a pace maker, this made me quite sad for her but also very thankful for my own luck in having the pathway in the left ventricle.
Overall I am happy that I had this procedure. I still worry alot about my heart, quite often get panic attacks and have unfortunately developed a slight social phobia.
I am sorry to write so much. I had a wrist operation a few months before the ablation, I’ll tell you that was much more painful.
God bless Doctors and Nurses everywhere. You are all amazing. – As you can see I am extremely grateful.
Reading a post on a different forum where a fellow WPW sufferer was supposed to be a twin, I also was told that I could be a twin whilst my mother was pregnant. I was a born a single child. Doctors might be interested to hear this???
Good Luck,
Keith
Keith, I’m not a doctor, but I’d recommend that you get a second or third opinion on the almost daily flip flops you’re feeling. I’d want a better explanation than “everything is fine.”
I’m glad to hear everything is otherwise fine for you. We are truly blessed to live in a time when these procedures are available.
keith~
It is interesting to hear about the procedure from someone who had it almost ten years after I did. It makes me wonder at how much medicine has advanced since the early 90’s. I was completely asleep for my procedure, and it took around 8 hours. It sounds like yours was much easier and faster with less recovery time.
As for the “flip flops”, that is exactly the feeling I was talking about. And while I don’t have it every day, when it happens it is scary enough to make me want to hide. And it happens at random times, I could be playing soccer or sitting down and watching TV, it doesn’t matter. I’ve also asked the doctors about it, and they said it was nothing.
Interestingly enough, my mother was also told I could be twins when I was in utero, although I was born a single baby. This could be something important, maybe the doctors should look into?
I have been diagnosed with WPW now for the last year or so (I AM 27) and am currently on the waiting list at Beaumont Hospital, Dublin to have the ablation treatment. I too have suffered quite a lot of episodes of, tachycardia, is that the word?. Before I was diagnosed with this syndrome I was terrified when it happened, I thought I was having a heart attack or something like that. Even today, with some understanding and knowledge of the condition its still very scary when my heart suddenly begins to become erratic. It seems the most normal actions can set it off too like just running up the stairs, bending over to pet my dog, turning around in the car or simply walking along the street, it can sometimes start up.
I remember the first time it happened I was in the gym when I was about 24 and I was lifting some weights when my heart suddenly rushed into a rapid beat, it frightened the life out of me, even tho it only last no more the 15 seconds or so.
I also regretfully experimented with drugs when I was in my teens and thought that this may have been the cause.
The cardiologist that diagnosed me said that although not directly responsible, the consumption of drugs such as ecstasy and cocaine combined with cardiovascular exercise may have been a contributing factor in my development of the decease as intensive training can change the size and shape of the heart.
I had been quite apprehensive and very nervous about the ablation treatment, but I’m glad that I happened to find this blog while searching for some info about the treatment of WPW. its given me quite a lot of insight into how the procedure is carried out and although some have suffered side effects like the flip flop feeling keith mentioned, most operations, it would suggest, are a success.
Thank you all.
Female 43 with WPW. Doctors found it in my 30’s during mild surgery for something non related. Recently I am getting some pain from Arthritis. Arthritis Doc doesn’t have an answer for the medication reaction with my heart condition. I do not have a family doctor.
DOES ANYONE KNOW…What prescription drugs are good for arthritis- antiflamatory that do not bother the WPW as much? And, which ones to definetly stay away from?
Thank you
I just had the Radiofrequency Ablation done on Austust 14, 2007. The Dr pronounced it a success, but an hour later another EKG in the recovery room showed that the WPW had returned. I am back on propafenone – a drug that makes me sluggish and jittery. I would like to hear from someone who has undergone the procedure a second time.
I was first diagnosed with WPW in 1977. I had short episodes of tachycardia lasting seconds to 20 minutes until June of 2007. I had an episode that lasted 3 hours before I got to an ER. I was on propafenone all summer and counting the days until I was “cured”. This has been a major disappointment to me, but I would be willing to try again.
Third ablation coming up for my son.
My son is 15 now and we are getting ready for his third ablation. He was diagonsed 2 years ago. The previous 2 ablations were unsuccessful which was a huge dissapointment for my son. This third time the doctor will be burning instead of the cyro. My son’s WPW is a very rare case not many documentmented (according to the doctor) his wpw is lower right just under the tricuspid and close to the cornary artery in very think tissue around the 8 o’clock. His heart at rest is 104 and when in SVT it is 240. He is on atenonol to keep his adreanalin down. With his being rare and difficult the success rate is 80& and he is in a higher risk for sudden death. End of October we will be going in for his third ablation and if it is unsuccessful again we will do it a fourth time if needed. I hope and pray that this time it is successful for my son this is such a huge let down for him. I do believe this is the best treatment and for him to live a complete normal life he is so looking forward to scuba diving and football again.
I’m a 39-year-old male and have had two ablations (first one in 1999 and second one in 2005). I’m an active cyclist and only recently got hit by a car while on my bike and ended up in hospital. It was in hospital that the ECG showed that the WPW had come back again.
I had felt palpitations for the last few months, but no tachycardia. A third ablation is now on the cards. Not looking forward to it, but neither am I looking forward to eating beater-blockers. I had a number of side effects, especially from Noten and they really ‘slowed me down’ (lethargic; weight gain etc).
Cheers
Mark
In response to Alissa, dont take any percoset, Midol,ephedrine (obviously) novocaine,I know those are not for arthritis but if you have already and had no probs, then you should be fine but in my case, those are bad.
Keith, that story scares the hell out of me, you are brave to have that done. For me I am way too scared, but I dont feel sick enough to have that done.
A six year old girl with WPW died on the soccer field almost immediately after finishing a game. She with known WPW syndrome was medically cleared by children’s hospital in Boston, to play soccer. The whole town is devastated.
I’m really shocked at how similar everyone’s stories are to mine. I’ve been having these heart palpitations on and off for at least four years now. At first the doctors and myself thought it was stress induced as it only seemed to act up during stressful periods in my life. I’ve been off and on the halter monitors at least four times and unfortunately was never able to catch anything. It was until the past year that they had intensify in frequency and length. lasting from seconds up to twenty minutes. I’ve even had eposides where the palpatations weren’t there but if I get up too fast, I’ll pretty much pass out (due to my low blood pressure), I won’t loose consciencenous but I will temporarily loose vision. And it’s like as soon as I hit the ground I can get right back up again. I’ve been keeping a log and the palpatations can happen for no apprent reason (just getting out of the shower, walking along the sidewalk, driving, standing up talking to someone). Afterwards I feel dizzy, my chest hurts, nauseated and even sometimes I feel pin pricks in my chest. They have done an echocardiograph with and without the bubble study thinking it might be a hole in my heart (still watiging for test results) The last one happened last week, except I ended up having a panick attack with it. It wasn’t so much the palpatations or the panick attach (which I’ve had both before) that worried me but the sharp pains in the chest a min or so afterwards. Well the paramedics hooked me up to a portable EKG maching and actually caugh the WPW happening. I have a follow up with my doc next week to figure out the next step. He did mention the test where they go in and burn out the problem but looks like we’ll have to first find out where the problem is first. I’m just glad that after four or so years of frustration we finally have a name.
My son had three tries this year one to feeze the extra pathway and two to burn the extra pathway. The freezing held for 8 hours. Because his extra pathway is so close to the AV node so far when they try and get it he starts to have heart failure. So instead of him ending up on a pacemaker he has choosen being on medicine. Has anyone had this same experience with success? My son was on his way to a professional football career. Because of these failures this won’t happen.
I was identified with this following a medical to be an airline pilot in 1989. Having the condition stopped me from pursuing that career (the rediative ablation treatment was never mentioned, I assume it was’t available in the UK at that time), but apart from occasional bouts of having a missed heartbeat and very occasionally a fast resting pulse (up to 140) after alcohol I’ve not had serious symptoms. Now given up the drink, caffiene, chocolate etc – chocolate being the hardest. Does anyone know whether this condition is hereditory – I’ve a two year old daughter and wonder whether she should be checked?
Bizarrely I remember my mother telling me that she was told she was having twins – this was in the late ’60s so maybe they determined this from the sound of the heartbeat, not having ultrasound scans back then?
Im having the op in 5 days, im very nervous! Im 25, diagnosed at 18. They say its simple and all I’ll just need 2 plasters afterwards.
They make an insertion in your groin, and your neck. They dont go in arteries, and you feel nothing. So they say…
Im having it done at Manchester Royal Infirmary, for anyone who may be going there it is the cleanest department I have ever seen.
I put up with an irregular heartbeat for too long and have finaly plucked up the courage to correct it, fingers crossed.
Ill leave another post here once Ive had the op and rested a couple of days!
I had the op, wasnt that bad. Was a success, and my heart rate is normal for the first time in 25 years. Im sleeping better, feel better…
Although awake for the procedure, local anaesthetic and sedation meant i didnt feel, hear or see anything. Im taking off my strange clear plastic plasters today (48 hrs after op, 24 HRS AT HOME) from groin and neck.
My beck hurts a little, and its still numb. My groin gives the odd pai but all in all, Im happy!
Ward 16 Cardiology at NHS Manchester Royal was great. Clean, loads of foods, lots of good lookin attentive nurses, and best of all, its all free.
Good luck to anyone having the op :)