So I am graduating from my LPN program in april and our class has to pick a charity to raise money for ... today in class Rachel our class rep asked everyone if they had a charity that was close to there heart...ofcourse i wasnt going to stand up and say anything in front of the whole class but i really would LOVE to choose the SADS foundation... Sads stands for "Sudden Arrythmia Death Syndrome" and there are a few genetic heart disorders that fall under the umbrella of SADS and they all can cause sudden cardiac arrest in young otherwise healthy children and young adults. I first learned about SADS when an old neighborhood childhood friend Blakely Cummins passed away unexpectedly in her sleep at the age of 22 last November.... I was absolutely SHOCKED... how do you just go to sleep and not wake up? a few months later I went to Blakelys house to see her mom who was doing some art work for my friend shelly... Kathy Cummins started talking about her beloved daughter and said that basically all the coronor could tell them was it had to be a Cardiac Arrythmia, otherwise she was perfectly healthy. Kathy had mentioned that Blakely complained of feeling dizzy and feeling like she might passout a few times before her passing, but really those were the only warning signs she could think of. After Kathy mentioned the fainting and dizziness it hit a nerve in me.... for days after i just had this gut feeling that maybe i should get checked out. Since i was 10 years old i have had "fainting" spells. I can remember passing out 4 different times in elementry school, after gym class, during a christmas play, at a friends house after being outside, at the mall with my mom, my parents took me to the dr. once and they said i must be " hypoglycemic" (low blood sugar) so for years i would carry candy around. Then the episodes stoped for a few years ... around 17 years old they came back even worse, now they were happening in the middle of the night... i would wake up with my heart beating really really fast, so fast i would get short of breathe and just pass out in my bed ( it is really unusual to passout while laying down) and they would happen if i someone would wake my up in the middle of the night or if my cell phone would go off and wake me up, many times i would wake upp go get some water then pass out half way down the hallway.... they only warning i usually get is a racing heart beat and shortness of breath. I had 6-8 episodes a year. I remember going to my mom one day and just crying in her lap because i was so frustrated!! to this day these episodes scare me and are debilatating, they cause me to have so much fear and anxiety because i never know when they will occur. They finally stopped for a year then when i was pregnant i had just one episode where i passed out while taking a shower. The next episode would be November 2010 same as usual i woke up around 2am with my heart racing and before i could even realize what was happening i passed out agian..i usually wake up really nauseas and clamy and i feel weird for the next 24 hrs. this is when i said enough is enough ! I had had a school physical before entering nursing school and they did an EKG which came out normal except for some PVC's which arent life threatning i mentioned fainting but didnt go into detail so she said to come back if i passed out agian. I went online and found the SADS foundation... its sounded like exactly what i was doing,,, i contacted Joanne Robertson and before i knew she was calling me trying to get ahold of me, she was amazing! she said for sure need to be seen especially considering my mom has the same fainting spells and has had them her whole life.. I then was able to get in w. Dr Chris Johnsrude who is an electrophysiologist who specializes in the rhythm of the heart. we did an ekg which was normal, an eccho which showed hypokinetic on left side but wasnt to bad... then we did a 24 hr holter which was normal. He said some gentic disorders like LONG QT SYNDROME which is a sads conditon its very hard to detect unless he was to cathc me in the act of passing out.... he decided to do a heart cathetereizaion an EP study they basically try to stimulate your heart into an arrythmia but he couldnt get one started so I now have a ILR which is an implantable loop recorder it is super small and looks like a USB drive its implated under my left arm it is set to record my heart rythm if it gets above 176, or drops below 30. I also have a little box i carry with me if i pass out i press the button and hold it over my implant and it will record what my heart does before, during , and after my episode. I have a scanner at home that i hook upp to a land line (jsut like a pacemaekr or defib) and send my recordings through the phone... im supposed to send my first recording in this week, i havnt had any episodes since i have had this but its only been 3 mo. im curious to see if it has picked anything up.. im praying we find out whats going on without me passing out agian or anythign worse... My dr. wants to do genetic testing for long qt soon, but insurance is really difficult when it comes to that its very expensive. This all has brought on so much anxiety for me... my dr. said he knows something is for sure wrong and he will do whatever it takes to find it.. he is amazign! ... It is always in the back of my mind before i go to sleep is my heart going to spin out of control tonight and me now wake up? and i going to passout and noone find me... or worse my son finding me... these are crazy fears i know but they are there and they are real... through all this i have heart so many stories of young lives that have been lost... even recently a friend of mine step sister passed away in her sleep unexectedly at the age of 32 from SADS. This could happen to ANYONE at ANYTIME but these conditions are 100% treatable with a defribrilator....People just need to know the warning signs IF they are there : Unexplained fainting upon being startled, exercise or sleep, unexpected or unexplained death of a young person, seizures. sorry this was soo long!! Just thought id share a little more about me because this has been a huge part of my life. and it consumes me at some points.
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