What was your clue?

Alot of people ask me how I knew something wasnt quite right with my heart health. Its hard to answer because Ive suffered with palpitations, chest pain and preventricular contractions for years but they didnt concern the dcotor. They always bother me, especially at night, when laying down and for some reason when Im on my left side. Maybe thats because I have a right bundle branch block? It is a typical sign in Brugada.My EKG also says I have an axis deviation so maybe thats why symptoms can be positional? Who knows? Just speculating

Im asking people what was that main clue, that defining moment when you said “I think I need to see a doctor and talk about this” for me it was when I was on vacation and we went to a waterfall. You have to walk about a half hour down stairs to see the whole thing and get to the bottom to see the beauty of it. But guess what? That means you have to walk UP STAIRS for a half hour. It was also August and very hot. I had just come from horse back riding on a trail for an hour and that takes alot of muscle, strength and stamina. Most think horse back riding is just sitting there lazily doing nothing while the horse moves. Well if your doing it for real, thats not the case. You are controlling the horse with your body, mainly squeezing your legs together as tight as you can around its body to cue the horse what to do. And you kick it in the side to cue it. They weigh around 1200 pounds so you can only imagine how hard of a kick and squeeze you need to do to get this animal to do anything. They probably think a fly landed on them. My point is for one hour I was getting a muscle workout and riding up and down rocky paths. THEN, went right to the waterfall when I was already taxed physically. At the bottom of the waterfall I was already exhausted from riding, being dehydrated and hungry. But the only way out of there was walking up the stairs in the sweltering heat. Every couple of steps my heart was pounding, flipping, turning…I was dizzy and couldnt breathe. I felt weak and faint (fainting is a huge sign in Brugada) but I kept going. I had no choice. 3/4 of the way I just stopped. The kids were leaps and bounds ahead of me but I couldnt move. I was scared to move. What I was feeling in my chest was not right. My husband came over to me and I started crying a little. I knew right then and there something was wrong. There is no reason a 33 year old woman should be reduced to tears because shes afraid to climb any more stairs. I eventually made it to the top and was very close to fainting.I was sweating so much, which causes you to lose electrolytes like potassium, sodium and magnesium, which causes arrythmias. The mix between dehydration, over heating, physical activity and low blood sugar was almost a lethal mix for me but at the same time my cue from my body telling me “get your ass to a doctor ASAP!”


The beginning? The end? Middle of the road?

A few days ago my kids genetic tests were sent out to the lab. I should know in 4 weeks who has Brugada and who doesnt. All 5 kids were checked out by electrophysiologists. All 5 so far are asymptomatic and have normal EKGs. That doesnt mean much because Brugada is a problem later in life. Its great that,as children, they dont have to be burdened but it doesnt mean things wont change with age.And problems in childhood are possible but not probable

So as I shipped out the genetic kits to the lab I had mixed feelings.I felt like I was at the end of this long road.But I felt like I was at the very beginning. And at the same time felt both ha ha!

I felt like it was the end of the journey because I was diagnosed, my ICD is in place, Im healthy and moving on with my life. I will find out if any of my kids have it but in the mean time they only need to be evaluated every 6 months with an EKG. No ICD or intervention needed at this time.So in essence, all of us with Brugada in my house, will just spend time here and there at the doctor with, God willing, no emergencies. I will very soon know what Im up against, who has it, who doesn’t and can move on once again.That is why Im feeling like Im wrapping up the end of a night mare. But not really…

Technically its the beginning for myself and my kids.Yes, I have an ICD but symptoms and events can be on their way. Yes, Ill be safe but it doesnt change that something could be coming. My kids, I could only hope none have Brugada. But if some do,although its just routine visits, what IF they turn asymptomatic? What about the trips to the ER to get an EKG every time they have a fever (as ordered by the doctor) Will they need an ICD in childhood at some point? What if they are adults and need it but dont want it? From now on I have to tote around an AED (automated external defib) IN CASE they have symptoms. What will that be like? So this is why it feels like the beginning of a life long journey…

So is it the end or the beginning or middle of the road? Or a chapter done in a book and Im starting the next chapter? Day by day the answer changes and my feelings about it…