Brugada Girl ™

As my readers know, I just had my 6th and final child. Although Ive had Brugada all my life and delivered 5 other children with it, I never knew I had BrS until this pregnancy. We all wanted to assume this delivery would be no different then the others. After all, Ive always had Brugada right? Why would it be different this time? Besides the fact that Im older, and Brugada worsens with age,we assumed all would be well. Yet deep down I worried the whole time that this time WOULD be different and I was absolutely right. Let me just say up front, my experience with labor and delivery isn’t necessarily what will happen to any woman who delivers with a BrS diagnosis. Each person, child,labor and delivery can be totally different. Im just sharing my story because this blog is like a diary about MY life with BrS. If there are any women out there who are or will be having children, PLEASE don’t think that it will be like this for you.The purpose of this post is to educate and inform, so just keep the info in the back of your mind.

This pregnancy was a surprise. I didn’t plan on any more children because I was terrified of my new diagnosis. I saw my OB doctor, cardiologist and a high risk OB to come up with a plan. They weren’t overly concerned because I delivered 5 other children. But their plan was to have a scheduled delivery with pitocin and an epidural. They felt the adrenaline rush I would get from the intensity and pain of delivery would be a bad idea. They also wanted to turn my ICD off so I wouldn’t get accidentally shocked as my heart rate rose with pain. They desired a calm, controlled and planned delivery. I would also speak to an anesthesiologist about what meds were safe for me for pain. That was the plan….simple and cautious. I carried on with my 9 months seeing the doctors here and there and confirming everything was well. I didn’t have any changes to my heart,no arrhythmias,no shocks. They only noted my heart rate was much higher all the time but that happens to women during pregnancy, BrS or not.

Anyhow, my scheduled day pf delivery arrived. Before starting pitocin which starts labor, they wanted to give me an epidural, so as the doctor advised, I wouldn’t feel pain. I was a little nervous the anesthesiologist would say no because I have heard that they are afraid to give meds to BrS patients. The nurse went out into the hall and told him what my diagnosis was. Within a minute she came in and said he was fine with giving an epidural. I have to admit I was a little put off by the fact he didn’t want to talk to me, ask me questions, find out if there are meds I can’t take, etc. But, I figured he’s the doctor and he knows best. In hind sight I wish I went with my gut feeling that I needed to talk to him more, but it’s too late for that now.

He came in with his cart to administer the epidural. I will point out now, I was not in labor yet, feeling fine and all my vital signs were normal. He gave me the epidural, it hurt as usual (I’ve had epidurals before with other children and it always hurt a little) but I dealt with the pain because its much better than feeling labor pains. When he was done I laid down. All hell broke loose….

Im not sure how long it took for everything to come crashing down. Maybe 5 minutes? After I laid down and breathed a sigh of relief it was done and labor could begin, I felt it. I felt my heart wind up like a top. It beat faster and faster and harder and harder until I started suffocating. It felt like someone covered my face with a pillow. I yelled out “Something is wrong! Something is wrong!” It got faster and faster and I struggled to breathe. The cardiac alarm I was hooked up to started alarming. I was up to 170 beats per minute doing nothing in what seemed like seconds.It WAS seconds. My blood pressure went the opposite way and bottomed out at around 80 over 50. I started crying “Make it stop!!!!” A black hole started to creep around my field of vision.An unbelievable weakness came over me and I laid there crying staring at the ceiling.The blackness was invading me as I started to shake and go into cold sweats. At the same time it looked like lightning bolts started shooting into my vision as well.Between the lightning and black I could barely see.I thought I was going to die. It felt like my body was shutting down slowly.My heart ran away with itself, I couldn’t breathe, my vision was going and I was so weak I couldn’t talk. I thought about my kids, my husband, the son I may not meet.I thought about my father and thought I would die like him. The room was filled with people. The hall was filled with people. Alarms were beeping everywhere. The nurses were hanging over me telling me “please calm down” because I was crying hysterical.I can read the panic and concern on their faces “I NEED you to calm down!!!” They tilted me to my left side,elevated the bed so my feet were up higher than my head and oxygen was thrown on me. I heard a nurse say I was white as a sheet and sweating yet cold.They flooded my body with fluids through IV. I thought that was the end. My husband, who was asked to go take a little break BEFORE my epidural ( they were afraid he would faint from a needle) came back in to a shit show.He left the room to get a snack and have a cigarette and he comes back and I’m in medical shock…

At this point I was on the verge of unconsciousness (or maybe death) so I don’t know exactly what happened, who was there, what was wrong. All I know I was afraid.I wanted my kids. I wanted my son. I heard his heart beat in the background on the monitor. It sounded like a galloping horse. He was ok but what about me? Would I ever hold him? I fought to keep my eyes open, afraid if I shut them, Id never open them again.I said Hail Marys in my head.”Oh God please let me live!” Whatever the hell happened, I slowly converted back to normalcy. I started to stabilize, calm down, and my heart rate and pressure made its way back to normal. No one said anything to me WHY this happened.Or WHAT had happened. I put 2 and 2 together and asked “what was in the epidural?” I didn’t get an answer. The question was dodged. I was told “ask the anesthesiologist”. I had a nagging feeling I received a med I shouldn’t. After all, I was absolutely fine until I had the epidural. No one answered me…

To make a long story short, I continued on with labor. The pain came back as the epidural wore off. I was feeling pain, not happy and my heart wasn’t thrilled either. But it was nowhere near as bad as it was before. I needed more meds put into the epidural twice through out the course of labor. They switched the formula and would only give me a tiny bit just in case my heart reacted. In the long run I ended up delivering naturally which upset me as well because I was specifically told NOT to deliver natural because the pain may set me into arrhythmia. I pointed this out to the staff. I was damned either way. They noticed while I was in natural labor and delivery, my heart wasn’t nearly as bad as when I had anesthesia. So what was their final thought? Deal with the pain and get the baby out so the whole scary ordeal will be over because there is no way in hell you are getting more meds. Exhausted mentally and physically, scared and anxious, I delivered my son. What a relief it was over. Nothing went as planned…

So what happened? After the baby was born and I was settled my husband told me they called a “code” on me. The code team was out in the hall. What does that mean? The code team is called when they believe your life is in imminent danger. I do remember hearing someone calling out a code now that I think about it. My mother who is a nurse told me later on they probably thought I was going to die and would need to be revived.Thats the only reason the code team shows up.I couldnt believe what I was hearing.In this day and age women aren’t supposed to die from childbirth. Yet I knew it wasn’t childbirth.It was BrS that complicated everything. Again, I kept asking “what was in the epidural??!!” No answer. I was told it was a combination of meds they didn’t know the name of or I should request my medical records.Whats the big secret?? My husband said he heard the code team mention ventricular tachycardia, a deadly rhythm. Was I in V tach?? No one had said that but he heard the team say it? Can I get any answers?…

Listen, I may sound like a conspiracy theorist here but something stinks! I have a feeling SOMEONE messed up and they were all covering each others tracks. No one wants to get a colleague in trouble. Why wouldn’t someone tell me what happened or why it happened?Is that my right to know? Why couldn’t I find out what was in that epidural? How can people be so damn elusive about this when they called a code on me?? Doesn’t this sound suspicious to you readers?? Of course I have no way to prove anything because as long as the staff says “it was nothing” I guess I had to believe it.

They had a cardiologist come in and see me. May I add I was a patient of THIS cardiologist for years who didn’t even realize I had Brugada and was staring at my Type 1 EKG for years. When I saw him my heart dropped because I know he knows nothing about BrS. After all, he couldn’t even diagnose me. He was cocky and arrogant as usual and said what happened had nothing to do with Brugada. He did tell me it was very strange that there wasn’t a copy of my EKG in my chart. Imagine that? A cardiac patient with a defibrillator goes into an arrhythmia and 170 beats per minute but they miraculously don’t have an EKG from when it was happening? Hmmmm…. sounds like bull shit to me. So I asked this incompetent doctor what he thought happened. He said he didn’t know and it was a “benign issue”. Thats his way of saying in fancy terms that he doesn’t know. Big friggen surprise he doesn’t know. He doesn’t seem to know anything does he? Then he said he thinks its was reactional. I was reacting to the needle. He pointed out that many people faint from needles and its no big deal. I was getting pissed at this point. I reminded him I had 5 other children, had epidurals before,this never happened and Im not afraid of needles!! I also pointed out that this whole load of crap was dropped on me AFTER the epidural, not during. I guess he felt stupid and went back to saying its a benign issue. He reassured me BrS had nothing to do with it and left. Another useless conversation with another useless doctor.Again, I had the feeling there was something I wasn’t being told. I asked him what was in the epidural and that there is such a thing as a “do not take” list for BrS. He said he didn’t know what I was given….

Over my 2 1/2 days I asked over and over what I was given. I asked multiple staff. Multiple nurses. Multiple doctors….no answer.I mentioned I was told it was “reactional” and “benign” and I would get a smirk and a “yeah right” indicating they didn’t believe that yet no one wanted to elaborate.This still sounds suspicious right? But finally light was shed on the subject! As I was being discharged, a nurse blurted to that I was in shock. I just looked at her because I wasn’t all to familiar with the term.Not to mention no one had said anything about it before. Shock is what happens when your heart rate goes up and your pressure drops. And what else is it? A life threatening situation that if it isn’t reversed you DIE!! Take a look at the definition on Wiki…http://en.wikipedia.org/wiki/Shock_(circulatory) Now someone please tell me why I wasn’t told I was in shock? I had all the symptoms and they called a code. WHAT.HAPPENED???!! WHY???!!!

The doctor who delivered the baby, who was excellent and calm through the whole thing came into the room to discharge me and send me home. I took one last attempt at asking what I was given in the epidural. I tad him I really need to know! I have children with Brugada. I need to know for their safety. He left the room to check my chart and came back in and told me “It was bupivicaine” Anyone hear of that med? I sure did! I recognized it from the “do not take” list. I blurted out “Isn’t that on the list of meds I can’t take?!” In a quiet confirmation he simply said “yes” So there it is. The anesthesiologist effed up. Just like my gut feeling when he didn’t consult with me. He didn’t read into BrS. He didn’t check the website or access the list. He just pumped a med into my spine with no thought. Are you not familiar with bupivicane? Well guess what? It’s not a “preferably avoid” med. Its an “AVOID” med. They know for a FACT it can’t be taken by Brs patients. Matter of fact if you google it you will see they used to use tho med for drip challenges to diagnose you. It brings on arrythmias, unmasks potential BrS patients or it aggravates a Type 1 ( which is me) to the point of V tach. V TACH??!! There is that term again! Remember my husband said the code team mentioned that?? Yet there was no EKG and no mention of it in my chart and the retard cardiologist said my rhythm was fine.You don’t call the code team when everything is hunky dory. Again,someone isn’t telling me something…

Heres a little reading on Bupivicaine which on the list of meds to AVOID. Its given in an epidural
http://www.medscape.com/viewarticle/712193_9
Interesting how they shot this garbage right into my body!Know this list well…www.brugadadrugs.org

Its more than obvious what happened now. No one wants to admit it. No one wrote it down. The proof is lacking. I leave the conclusion up to my readers. Put the pieces of the puzzle together….A Type 1 Brugada patient was given a med on the AVOID list, her heart rate goes to 170 and pressure to 80 over 50 and the term “shock” and “v tach” is thrown around as the code team is called to save my life.I have all the symptoms of shock…what do you think??

BUT NO ONE KNOWS WHAT HAPPENED! Yeah right people! I know what happened. Someone fucked up and and everyone is dodging so there is no law suit. No there is no law suit. Im alive and my baby is alive and healthy. Thats all I care about. But whats the moral of the story? Have that damn list with you everywhere! Tell every doc about it! Go with your gut feeling if something doesn’t seem right. Be your own doctor. Be informed. Know what is wrong with you and be in charge of your medical care.Doctors aren’t God and they do screw up and just as quick as they can save a life they can take one….

UPDATE: DESPITE MY ICD BEING OFF TO KEEP ME FROM GETTING A SHOCK DURING LABOR AND DELIVERY, IT WAS CAPABLE OF RECORDING HEART ACTIVITY. THE ICD RECORDED THAT THE MORNING OF MY DELIVERY I DID IN FACT HAVE AN EPISODE OF NON SUSTAINED V TACH. WHETHER IT WAS FROM THE EPIDURAL OR LABOR, WE WILL NEVER KNOW. IT DID HAPPEN AFTER THE EPIDURAL USING BUPIVICAINE WHICH IS FORBIDDEN SO IT SEEMS COMMON SENSE TO ME. BUT STILL NO DOCTOR WANTS TO CLARIFY THIS FOR ME…