Im a 22 year old male. 6'1" 205 pounds. This is my WPW story.
Posted , 3 users are following.
Hi, I'm really curious about something here but, first let me give you some of my background. Also, this basically just turned into my Wolff-Parkinsons-White Syndrome (or WPW for short) story. All the way from the start, up until now. I knew it was bad when I woke up feeling like I was going to die everyday. It wasnt always like that though. In highschool, I first started having symptoms. All of a sudden, in my sophomore year gym class when we were playing basket ball on a hot dehydrating day. My heart started speeding at what I would guess was about 145bpm or more. I have a pretty good judge of where my heartrate is at nowdays. Almost to a tee without checking. Anyways, it freaked me out but I didnt experience any symptoms after that and I forgot about it. A few months later I broke a bone, when I went to the hospital they said that I will need a surgery, and that I will need to be put under anesthesia. So, in that case test were done to make sure it was safe. I went to cardiology. They noticed something was wrong. I got a ultra sound. The lady confirmed it was WPW. I was put under and had the surgery for my broken bone then, sent home with Vicodin. I went on to live with WPW for almost five years after that. For the first three or so years symptoms would come and go. From time to time they would be a little bit worse then others but not bad. But, in the last two years, the episodes would come more often and heavier. Until every single morning I would wake up super dehydrated and feeling like I was literally going to die. Thats when i knew i had to go in for the ablation. At this time, my Mom happened to have gotten a promotion at the hospital she worked at. Surprisingly, her promotion was to Lead Nurse in the Cardiologist Department. Apparently, the doctor in her department is very talented at WPW ablations. So, my Mom schedules me in and a week later she drives me to his main office about 30 miles away. I go in super anxious and shaking. They shot me up with something good. The nurses played the best song for me off their Jambox, Peter Tosh - Reggae Mylitis. I was still shaking so they shot me up with something better. Then it subsided they made sure all those patches they put on were proper and that my body was in a comfortable position then I passed out. When I finally come around I immediately notice a difference. The nurse makes sure I don't sit up at all. Then, I recover somewhat and still messed up my blessed mom takes me around town and she buys me food. Then, I go home try to sleep the pain of basically just the incision sights and some heart pain (They said that a little pain was normal). I recover after 11 or so days and I'm back at work. Hard work. Commercial fishing, long hours and strenuous activity. I didnt feel as dehydrated anymore. Also, had absolutely no symptoms of Wolff Parkinson's White Syndrome. Anyways a year later which is about now. I have had some palpitations lately and also I may have experienced some episodes of the elevated heart rate I've associated with WPW. I'm going to make an appointment as soon as i can and see how things go. This is my story so far. Still feel like I may die young but, I'll try to look past everything bad that's happened to me and move on. Live my life with vigor. And strife. SO, originally I said I'm curious about something. Im curious if anybody else that has been diagnosed with Wolff Parkinsons White Syndrome, has a lot of anxiety? Particularly curious if anybody has noticed less anxiety after their ablation? Thank you.
0 likes, 3 replies
ehawa drew86377
Posted
I remember having my first episode at around 10 years old, all through secondary school I would have them on and off , from 30 seconds to 4hours . I never knew what was wrong , I would tell someone and they would tell me to relax and sit down ect including my mum who did not know what it was. My heart would creep up to 204-215 bpm I assume how ever I’ve only really had my heart rate recorded in 2016 at the hospital, so have no idea how fast it was going when I was young. I could go 1 year with out an episode to a few months, the reason they recorded it in 2016 was due to me taking action and calling the ambulance so they could see what was happening to me as I was only diagnosed that summer after 9-10 years of having them. They stopped it with the so called ‘death drug’ it felt horrible ( had it again recently wasn’t too bad ) . I was put on beta blockers (horrible! felt like I couldn’t breath half the time ) then had my ablation last January. The experience was not as pleasant as yours. There were students in the room ( was never asked if I wanted them to be there) so it felt very busy, the iv sedation they were giving me did not help, I could see my heart on the monitor which freaked me out and I found out last July they had put me to sleep for 3 hours. In the end they burnt the extra pathway , damaged something ( need to press them on that ) and the recovery was filled with anxiety that I might die every night / have a heart attack which lead me into a really deep depressive state for months . I haven’t felt the same since surgery. I had a lot of ectopic beats and a few odd episodes that would make me feel faint/ Make me fell light headed for a few seconds . Every thing gradually got better 7 months after surgery, I do avoid stimulants where I can but I was able to do things again , it’s taken me a lot of time to get over my fear of death , meditation helped and reading books about living in the now. I recently had an episode again last week whilst running for the train and tying my shoelaces , the first since my ablation. The cardiologist said there may be another pathway so they’ve put me in for a second one , which is sad but I feel stronger then I did last year mentally so it hasn’t bothered me much just yet . I refused to go back on beta blockers until then and I am just living with it whilst seeing if there is a trigger like the cause of my most recent episode.
Its very reassuring seeing you write your story on here as it makes me feel less lonely with my experiences. And I would love to be updated on how things are going like another person on here but that’s completely up to you.
For the last questions , before I was diagnosed I felt like I would die everytime I had an episode but I would easily forget about it after it passed, when I was diagnosed I was more relieved then anxious. The anxiousness came from the beta blockers and the half failed op so I would say I felt / feel more anxious post ablation. Any tears now comes from the thought of having to go through it again.
Hope your doing okay, looking forward to your reply
Emma
drew86377 ehawa
Posted
Dear Emma,
thank you for replying. Wpw is pretty rare, I think 1 in every 100,000 people get it. It sucks because in severe cases it can be immediately life threatening. Even to children and young adults. And most people have no clue what these symptoms mean. Thats good you had some relief in the long run of your ablation. Its not uncommon for the extra pathway to regrow and need to be reassessed could be that. I understand that depression, and think its normal. WPW can be scary and leaves you feeling hopeless like nothing matters. Since youve touched on meditation and living in the now. I've also found relief in meditation and positivity. I know one thing Emma, were sensitive to a lot of things. Standing up, dehydration, running, exercise, breathing, eating, stimulants like coffee and nicotine, sleep deprivation, etc, etc... I appreciate your reply, this forum should be more active. I will keep you updated. Also im not gonna lie. I just accepted death but, with a promise to do what I can while I can. Be good to others, try to eat healthy, and in general take care of myself. Stay happy and live life to the fullest. Try not to worry. And go get an EKG. I think the number one problem for wpw is a bad doctor. Seriously, I had a terrible case I was right when I hought I was going to die. Maybe try to find another doctor how has a good past. Anyways until next time. Hope your day was episode free!
rachael54116 drew86377
Posted
Hi Drew, my name is Rachael i am 22 and i was diagnosed with wpw when i was 4-5 and had the ablation done right away when they found it. i was scheduled to have my tonsils removed but when they put the heart monitor on me my heart rate was 220 beats per minute, got the ablation done instead of tonsilectomy. I havent had to go to doc or had problem with it since except for minor palpations which are pretty unnoticable. i also have a huge fear of death and horrible anxiety which ive been getting better about but same thing here accepting i need to live my life to the fullest while im here. we have VERY similar fears and problems in that way tho. i have found some very interesting things along my spiritual journey bc i as well have turned to self transformation and i have started going even deeper into spirituality, and have found some truly amazing things. i would love to share some of the things ive learned with both you and emma, i feel a kinship bc we are all so close in age and have such similar stories and feelings. i hope you see this Drew and Emma! id love to get in contact 😄