Wolff-Parkinson-White Syndrome

I was in the hospital a few days ago and stayed for 2 days because recently, every time I drive or go out, I nearly pass out and then have tachycardia. Every time I stand up, I feel like I can’t breathe. I’m not eating enough, I’m underweight. I already have a heart condition that has been practically irrelevant, Wolff-Parkinson-White Syndrome. I’m scared and trying not to anticipate the next time this will happen. I’m scared to go out because every time I try, it happens. I don’t want to be alone, even showering sucks at this point. Even if I am on the phone with someone I feel a bit more safe and calm. I’ve experienced my fair share of anxiety and panic attacks! But this is nothing like that... someone tell me what to do because I feel like nobody can help me at this point and it’s making all of my other mental and physical conditions worse as well. I feel abandoned and just left to die, if I’m being completely honest. I feel like my body is shutting down and I’m literally only 20. (Consider the fact that I have fibromyalgia and a few other undiagnosed conditions that I’ve seen countless specialists for)

I had Wolff-Parkinson-White repaired in 1995. I'm having some sort of heart issue again and am waiting to get in with a cardiologist. My mother was discussing this with her PT today and she commented WPW could cause fibro. I'm wondering if anyone else has experienced or even heard of this.

Thanks!

In May, 2018, I went in for Cardiac Catheter Ablation to hopefully cure my case of Wolff-Parkinson-White Syndrome.

During the prep, my doctor came in and told me what would happen during the surgery. The team would go in through my groin and neck using catheters to put wires in and feed them through major arteries up to my heart. From there they would make a map of my heart and use heat to destroy the accessory pathway.

The doctor said there was a small chance, they would get in to my heart and decided not to do the procedure, because if they did, they would damage important parts of my heart.

Still, the surgery has a 95% success rate. I had put all my cards on it going as planned. But you never know when things will stray from the path.

When I woke from surgery, my doctor told me he didn’t do the ablation because my accessory pathway is next to my AV node and damaging that would lead to me having a pacemaker at 19.

I can only describe the feeling as soul crushing. I had let my hopes get so high, that the fall from the disappointment almost ruined me. What do you do when you wake up, expecting to be cured only to find out, the cure won’t work for you?

The surgery didn’t go as planned, but that didn’t mean my hope was misplaced. What has worked for others will not work for me and that’s okay. Getting cured may not be part of my story, accepting that was even harder than getting up from the disappointment. But I can still find ways to live my life with WPW. happily.

In May, 2018, I went in for Cardiac Catheter Ablation to hopefully cure my case of Wolff-Parkinson-White Syndrome.

During the prep, my doctor came in and told me what would happen during the surgery. The team would go in through my groin and neck using catheters to put wires in and feed them through major arteries up to my heart. From there they would make a map of my heart and use heat to destroy the accessory pathway.

The doctor said there was a small chance, they would get in to my heart and decided not to do the procedure, because if they did, they would damage important parts of my heart.

Still, the surgery has a 95% success rate. I had put all my cards on it going as planned. But you never know when things will stray from the path.

When I woke from surgery, my doctor told me he didn’t do the ablation because my accessory pathway is next to my AV node and damaging that would lead to me having a pacemaker at 19.

I can only describe the feeling as soul crushing. I had let my hopes get so high, that the fall from the disappointment almost ruined me. What do you do when you wake up, expecting to be cured only to find out, the cure won’t work for you?

The surgery didn’t go as planned, but that didn’t mean my hope was misplaced. What has worked for others will not work for me and that’s okay. Getting cured may not be part of my story, accepting that was even harder than getting up from the disappointment. But I can still find ways to live my life with WPW. happily.

I'm having my second EP Study and Catheter Ablation next month and was wondering if anyone has some tips to help prepare for it? When I had my first EP Study, I had done a lot of research, I just hadn't mentally prepared myself.

I have WPW, and am unable to have the ablation to correct it because of where my accessory pathway is in my heart. because I haven't been able to capture the arrhythmia on a monitor, my doctor wants to wait until I have another episode to move on with a treatment plan.

It worries me because I don't want to wait for something that could be potentially life threatening to happen. I want to ask for a stress test to see if that will trigger the arrhythmia and capture it at the same time. I'm hesitant because I've had doctors in the past tell me I'm just being paranoid.

I have WPW, and am unable to have the ablation to correct it because of where my accessory pathway is in my heart. because I haven't been able to capture the arrhythmia on a monitor, my doctor wants to wait until I have another episode to move on with a treatment plan.

It worries me because I don't want to wait for something that could be potentially life threatening to happen. I want to ask for a stress test to see if that will trigger the arrhythmia and capture it at the same time. I'm hesitant because I've had doctors in the past tell me I'm just being paranoid.

I was diagnosed with something new yesterday. I'm a 42 year old single mother of two kids, an avid creative, and my avocation is in science education. I work as a science curriculum and assessment specialist at my state's education agency. We are a family of neurodiversity. My 12-year-old son has #ADHD and is on the #Autism spectrum, #AspergersSyndrome, and my 10-year-old daughter also has #ADHD and likely depression. I have chronic #Migraine, #PolycysticOvarySyndrome, #HashimotosThyroiditis, #LichenSclerosus, #Depression, #AttentionDeficitHyperactivityDisorder , #IronDeficiencyAnemia, and have previously suffered from #PTSD and #WolffParkinsonWhiteSyndrome.

Now, I am #LivingWithPOTS.  

Yeah, it's a lot in one person (and family), and it's still difficult to wrap my head around.  I keep coming back to that paragraph to add something I'd forgotten.

Unlike most of my other conditions, I'm an outlier in terms of time to POTS diagnosis.  Mine took exactly 4 months.  I developed POTS from the flu shot I received last September. Yeah, that actually happens, my doctor confirmed it.  I guess I'm "lucky" for that?  I haven't decided yet.