Risen (Part 4)

This is the fourth part of my series about my journey. You can read parts 1, 2, and 3 by going to the home page, scroll down and to the right you will see “4 part series” listed under categories. Ive talked about my diagnosis, the time period where I waited for surgery, the day of surgery and now I will cover the recovery period. Im at 5 weeks recovery.

Im trying to figure out the best way to condense this time period. I cant give a day by day account. It would just be impossible. Im going to have to boil it down and talk about the emotional and physical recovery in general.Let me add here and now that just because 6 weeks is up, that doesnt mean your healed in every, way, shape and form. This is a life long journey. It doesnt end with surgery or a healed incision. Unlike other surgeries, where things are removed or fixed, this is neither. This is walking out still having a defective heart that hasnt changed at all and now a man made device is PUT IN! Most people walk out of a hospital missing an organ or have an organ fixed, we dont get either. We get an “insurance policy”. We have to live with it, work with it, play with it. We will have to have our “new friend” taken out every couple of years and replaced with hopefully a better smaller model.We will undergo a surgery over and over again. And in the mean time, we have to hope our defective heart doesnt reach its limit and fail. This is a heavy duty topic. Surgery is the end for many. For BrS patients, its only the beginning of a long road that we will never leave until we reach an old age where death is accepted and expected. We can let it control us or we can control IT!!!

So whats the physical recovery like? Well you can use your left arm for small things like opening a door or wiping a counter. In the first couple days for me, I couldnt even lift it. But later on the doctors want you to use it VERY lightly, no lifting the elbow above shoulder level. Trying putting your hair in a ponytail lol! You dont want to pull that lead out. I had a horrific time with pain. Some dont, some do. It depends on your anatomy. How much do they have to shove out of the way to form that perfect pocket? From what I read its worse on women because we have more fat and mammary glands to move out of the way. I was completely bed ridden in pain for a week. I cried in pain everyday. And thats with Percocet. I needed my husband to help me shower, get dressed, make all my meals. I was exhausted. I couldnt sleep enough. The anesthesia affects lasted for days. The pain was so severe in my arm and chest that I was hunched over and leaning to the side for about 2 weeks . I had to walk around holding up my left breast because the weight of it just pulled down on the incision making the pain unbearable. In the shower, it was the same, a hunched over mess, not capable of washing my waist length hair and shaving was impossible. The first few showers I cried because I was like a little baby that couldnt care for myself. I needed my husbands help to get washed, dry off and dress. I couldnt go from laying down to sitting for weeks. You dont realize that you use chest muscles when you sit up like that. The pressure pushed the ICD up against my chest wall and incision screaming to be released. For weeks, whenever I went from laying to sitting I had to push on my incision to give counter pressure and get help from my husband. I sleep with my youngest baby so I had to change my whole sleeping arrangement so she wouldnt roll over in the middle of the night and land on my chest or rip the surgical glue off. Small things were exhausting….doing the bills, cleaning a little, sitting up for a long time. I was just exhausted and still my energy levels are very low. You dont get just physically wiped out but mentally. You are just a burnt out mess. It does get better every week but honestly give yourself as much time as you need. The first week I was bed ridden , in agony, crying , angry, not wanting to accept it. I remember one night I actually had an episode of claustrophobia and feeling trapped by the ICD. It was so bizarre. I was crying in a panic yelling that I want this thing out of my body, take it out, I changed my mind, I dont want it. Obviously its not that easy. You cant just take it out. Its there and that threw me into hysteria wanting to flee from it. I wanted to run from Brugada and my ICD but wherever I run, I will take it with me. Its in my heart and chest, I totally freaked out. That was a bad emotional episode for me but it passed. Expect the first week or two to be very emotional, bouts of crying, grief, anger, denial.This notion that you go home smiling with a new look on life and best friends with your new computer friend that will save your life is a load of shit. I was angry, I hated it, felt like I didnt need it. I had no relief or huge exhale saying ” Im safe now!” That comes later and will get better through the months and years. So what do you have the first few weeks….pain, exhaustion, emotional roller coaster compounded with the need to have a normal life but you have to wait 6 weeks. I saw people having a normal life…taking walks, shopping, riding bikes, and I wanted it so bad. But I was recovering. And even after Im healed can I do that stuff, will I get shocked? So there is a tug of war going on….you want to live and live freely, like before. But your afraid to live like before. Your angry your in this situation and your ugly scar stares back at you in the mirror but at the same time you know you will live long. I can talk about retirement and the future with my husband peacefully not wondering if I will be dead at 55 like my Dad. I go back and forth. Angry, happy, exhausted, itching to get out, pain is dwindling, pain is unbearable. Recovery is ups and downs, going up hills and going down hills. The weeks feel like months. But day by day you realize you can dress yourself, you can shower without help, your taking less pain medication, you’re smiling more, your making plans for when your 6 week mark comes along. If I were to give it a timeline, for me personally and everyone will be different, give yourself 2 weeks of really hashing it out with pain and crying. The third and fourth week the crying has ceased but the pain lingered but not as bad.Enough to keep me in bed most the time though. The exhaustion held on like a bitch and coffee wouldnt even wake me. By week 5, I decided “Che sara’,sara'” Thats Italian for “what will be, will be.” In Jersey we say “It is what it is!” Starting week 5 I decided to do my makeup, play with my kids, clean my house, take walks, go to the store, breathe in the fresh air and let the suns rays and warmth heal my soul. Let God heal my soul. Now at 5 weeks Im at a point of acceptance, happy I did the right thing, my scar is healed and Im not mad about it. My kids are so happy to see me doing what I usually do. My husband is happy to see me waking up and planning my day. Life goes on. When you have an ICD it DEFINITELY goes on. So for my friends out there who are awaiting surgery for an ICD, please take my advice. Dont think by no means, you will go home smiling and pain free and full of relief. There will be pain, there will be the same emotional trauma I mentioned in “The Way of the Cross” There will be an itch to live but a fear lingering about living and getting shocked. Day by day, week by week, you will get better. It seems to last forever, and its very long and drawn out and taxing, physically and emotionally. Give yourself this time to rest, heal, sleep, pray, accept, cry. Dont rush things. Eventually one day you will realize you can do this. You have risen….

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Guilty as charged (Part 1)

A lot of people want to know my story. How was I diagnosed, how did I find out, what happened, was it scary, surreal, no surprise? Id figure Id share this. First, I am considered asymptomatic which means I havent had syncope (fainted), I never had cardiac arrest and was resuscitated, I never went into ventricular fibrillation (V Fib) or extreme tachycardia. I have palpitations, pre-ventricular contractions called PVCs for short (essentially its an extra heart beat here and there) and I get alot of fluttering and breathlessness at night. Night is when all my symptoms come out and cause insomnia. I think these are symptoms and many with BrS have them, but for some reason most doctors dont use these symptoms as criteria for diagnosing. Only the first couple I listed…arrest, v Fib, syncope are taken into consideration.

Once I hit 20 I started with palpitations and fluttering and sometimes it was bad, very bad. Ive seen one cardiologist after the other over the last 14 years that ran than gammet of tests. “You look good! Your healthy! Echocardiogram is good, stress test is good, holter or ECAT monitor shows harmless PVCs” I knew I had symptoms but hey, they didnt seem to care or be concerned so I ignored it. A few years later Id see a new cardiologist and was told the same thing. This cycle of ‘accept’ your symptoms and move on then find a new doc went on and on. I knew I was feeling something but being no one was alarmed, I wasnt. Doc after doc, no concern, so Id ignore it.

I did have one interesting occasion though that was alarming but I thought it was a single incident. A few months after 9/11/2001 (my husbands police department lost many officers and he dug at ground zero) I was under a lot of stress. One night I had a heart rate of 120 just laying down. It wouldnt stop, it was uncomfortable and I had pain and burning in my chest. I did something I never ever would do because I HATE hospitals, I called an ambulance. The moron EMT told me it was probably indigestion but if I insist on going he will take me to te hospital. They didnt even lay me down on a gurney in the damn ambulance. I sat in a corner and listened to this uneducated jerk who shouldnt even be in the medical field talk about what food he was craving. Hello!! Chest pain! Tachycardia! Can you lay me the hell down and stop worrying about your freaking cheese doodles!!!!Oops! Went off on a tangent a bit there. Just so disgusted with some ‘medical’ personnel. Anyhow, I went to the ER with my ‘indigestion’. They came in and ran an EKG. All that is , is when they stick electrodes all over you to see a visual pic of the electric activity of your heart. The nurse ran the first one, looked, ripped up the paper and ran it again. The second one she ripped out. She left the room and brought in another nurse. She checked the electrodes were in the right place and ran another one, stared and commented the machine wasnt working. I just stared thinking I was still in the presence of pure incompetence. I believe a 3rd nurse came in and ran it. What the hell?! 3 nurses cant read this!? Im not sure but they might of got a new EKG machine or brought a doctor in. I cant remember. All I know is a doctor had to come in and run what I think was my 4th or 5th EKG. the doctor walked out and the nurse said ” Id sure like to know what your family history is!” And walked out. I looked at my husband who left work and met up with me while he was still in uniform.Maybe there IS something wrong! I knew fat cheese doodle boy didnt know what he was talking about. I think I now what agita is!(indigestion in Italian) The doctor comes in and said ” your EKG shows frontal damage to your heart!” English please!? “It looks like you had a heart attack tonight” I wont bore you with the rest and details about running blood and all that. That was the beginning.The beginning that still gave me no accurate diagnosis because Brugada was only about 9 years old.I was taking Stacker. Remember those dumb diet pills that leave you full of energy and promise to shed the pounds? Well thats what they thought, the herbs in the diet pill gave me a heart attack. That was my diagnosis and I accpeted it. I saw a few more doctors after that but it was the usual ” I see nothing wrong!”

Fast forward to 2009, read my article “The First Sacrifice” about my fathers death so I dont have to re-write it. Once my father died, I was REALLY concerned about all these heart symptoms I was feeling that no dodctor was concerned about. What if I end up like my Dad? What if something is REALLY wrong? Maybe all my doctors are unqualified? Back to the cardiologist I went but a new group. This was probably my 5th or 6th cardiologist. I felt they would be a little more concerned now that have an early cardiac death in my family.More tests…monitors, EKGs, stress tests, bloodwork, etc. “Nothing is wrong! Your EKG is a little abnormal. Just some PVCs. Increase your potassium by eating bananas and leafy greens, stay hydrated, avoid stress and get good sleep” I left defeated and scared. He said my EKG was abnormal! Abnormal how? It doesnt matter I guess because he said nothing else. A few months, I decided to go back and see ANOTHER cardiologist. This time the nurse mentioned my abnormal EKG AGAIN but the doctor said nothing about it and told me to follow the same bullshit “potassium, hydrated, good sleep” rant. I left disgusted. 10 years of this crap and no one is concerned , all tests are fine, I guess Im fine. Im not going back. Ill just deal with it. 6 or 7 doctors cant be wrong. But deep inside my intuition said ” No damn it! I know my body!”

Fast forward again to now 2012, 3 DAMN years later!! The symptoms are still here but worse.Horribly worse and very scary. Im haunted with the thought I will just drop dead like my Dad. Im afarid to be active, afraid to do too much. I dont want to die in front of my kids. Thank God my husband is a first responder and knows CPR and all that. I KNOW SOMETHING IS WRONG!!! Why wont they believe me? Why wont it show up??? I called the doctors group that I saw in 2009 thinking maybe there has been a change in 3 years. Ill go in. What the hell I have good insurance. The receptionist tells me my usual doctor is booked “would you like to see a different doctor that is closer to your house? We have another office” I said it was fine and happy I didnt have to travel.Lets do the run around again. Cant wait!

I went to my appointment, the nurse ran the EKG , stared at it and walked out. Here we go again. WHAT ARE THEY SEEING ON MY EKG THAT IS SO FASCINATING ALL THESE YEARS? The new doctor walks in. A young female fresh out of med school. That annoyed me. I wanted a ‘big wig’ someone who knew everything. She looked at my EKG, looked back at the ones at 2009 and asked me “how do you feel right now?” I said I felt fine at the moment but have had palps/fluttering/breathlessness for years but am fine. She said in a serious tone “your EKG looks like your having a heart attack right here, right now, right before my eyes!” Shocked a minute but then I laughed and said “Im fine, no heart attack at the moment” My mind zoomed back to 2002 in the ER. I jumped up! “Wait!”…I was told years ago I had a heart attack from diet pills! Could that cause a bad EKG always?” She looked back at 2009 files again and said “whats alarming is your EKGs from 2009 and after, say the same thing, it always looks like your having a heart attack. They havent changed at all” Now Im annoyed because the other 2 cardiologists told me it was “abnormal” but not in what way. Why didnt they seem concerned? This new doctor looked VERY concerned. She said” In light of these unchanging EKGS and abnormalities and your fathers death, we need to investigate. I want you to see my colleague, an electrophysiologist. He studies rhythm and electric in your heart.” Now Im confused but happy. Somebody FINALLY believes me but wait…”Whats wrong?” “You might have a congenital heart defect and need a procedure done” I looked on with total confusion yet relief. She left the room and told me to see the EP. This women was a part of saving my life….

It was a 2 month wait to see the EP (electrophysiologist) and a stressful wait as well. Finally the day had come to see him. December 7th. Again we did the “stare at the EKG, stare at the patient” dance. He asked me a million questions about my family history, looked at my old charts, he spent an hour with me. He said “It looks like you have Brugada” Like the rest of the world I didnt know what he was talking about. He explained it was a heart defect in the sodium channels. Okey dokey. No biggie. What pill are you giving me? He explained it causes cardiac arrest or sudden death in many patients and its rare but fatal.Now, Im ready to freak. I dont like what Im hearing. My father! Oh my God! I AM going to die like my father! I knew it all along!! Now what???? He stood close to me and put his hand on my shoulder. Hes a very compassionate, nice doctor who seemed sad about this new especially because Im a young mother. “If you have this I have to put a defibrillator in you to save your life” I looked at him and the nurse and cried like a baby as he explained this and that its HIGHLY hereditary.I turned into a blubbering, crying, inconsolable mess. He felt very, very bad. He seemed positive before this it is what I have but once I started crying he said ” Its very rare. I dont think this is what you have. But being you have some signs, I have to check. Calm down. Its OK. Lets just check first and run several tests including genetic testing” My crying calmed down because I didnt have fact yet but I WASNT expecting after 14 years of nothing to hear the words ” I might need to save your life” Talk about a whirl wind of emotions…sad, scared, relieved, happy, fearful, angry it wasnt noticed before, thankful I found 2 amazing doctors. Off I went to get all tests done and wait until February 15th. Another 2 months of waiting for my fate.In the mean time I went home and googled all about BrS and made myself a pro and scared the shit out of myself for 2 months and spent a good portion of it crying. I was terrified now. But maybe, Im fine, like the rest said….

The whole month of January, I had tests done and they said they would call if there was anything wrong. No calls. All my tests must be fine and Im feeling VERY good about that. My genetic test was done and would be ready by beginning of February. Everything is hanging on that test( which I know now isnt totally true as only 30% of BrS patients come up positive, you can have BrS but still be negative) Its a week before my appointment and I called the lab to see if my results are in and on the way to my doctor. “No. Unfortunately, they wont be ready in time for Februray 15th. Sorry”

Today is the day. I will sit down with my EP to go over all tests EXCEPT the genetic test. Im scared to death. Why? They never called to tell me if the other tests were abnormal and the blood test isnt in so why should I be scared. It almost seems like a pointless appointment at this point and I was tempted to cancel. I might as well just go and see what he has to say..

“Well, your ECAT is normal, your stress test is normal, your echocardiogram is normal, EKG is abnormal but otherwise your heart is very healthy” AH! things were looking up, he seems positive, I was feeling positive.”Did you get the genetic test?” “Yes, and sadly we have to wait another week or 2” “Okay, thats fine” He fumbled through my chart and grabbed a paper out and was reading while leaning against the wall. It was dead quiet in the room. I took a peek and saw the heading of the paper was the name of the genetic lab. I was still calm but curious. Hmmm…whats he reading? It cant be the results. I just talked to them and they said they arent ready. Maybe hes reading to see what the tests will show and its accuracy when he DOES get it? He stopped and looked at me, a sad look. Went back to reading. Another quick sad look and back to reading. What?! What? What are you reading? “Okay, I have your blood work here, the results are in” I almost knew he was going to say I have Brugada because why else did he look so sad and keep looking at me while reading. He knew what he had to tell me, he knew I was sensitive and a very anxious person. He was buying time when reading trying to figure out how to tell me what ever that crap piece of paper said. I didnt want to hear it. I cut him off an said “Thats impossible to have the results. I just spoke to them Tuesday and they said they need another week” Kind of like, “Ha! Your wrong, thats not my bloodowrk!” He said “well this report came in Wednesday, the day AFTER you talked to them” I stood my ground and said its impossible. He stated my name and date of birth to confirm the results were mine and I confirmed it. “Then these are your results” Fine, I figured, just tell me already although I was the one obviously stalling. “It says a mutation has been detected” “Okay, well what does THAT mean?” “It means you are positive for Brugada”

My breathe left my body, my heart raced, the tears came gushing down and my body started shaking (I told you i am VERY anxious)Almost incoherrent, I said “I HAVE IT??!!” He just nodded, him and nurse looking particularly sad. The nurse jumped up and ran out claiming I needed tissues but I can see she felt very bad for me because she is my age and has 4 kids and it could easily be her getting the news. “Your kids need testing, they may have it” The sky crashed in on me, the room got small, I just sat there crying like I was in a dream. That must be it! Its a dream! I played this out in my head for months…,the scene of when Im told I have it. Thats all this was, a nightmare. It will go away. Someone please wake me up. Jesus! Wake me up. Jesus…why????? My EP started talking, throwing facts at me, asking questions, having the typist right down everything proving once and for all with 100% certainity I have Brugada. I sat and cried and stared at the doctor. I couldnt take my eyes off of him. He will save me. He has a solution. Hes brilliant. He found the diagnosis after 6 or 7 doctors failed over 14 years. He will make it better and all go away.He stayed close to me feeling awful. “There is no cure. I need to put an ICD in you to keep you alive. You can live very long with Brugada and NEVER have cardiac arrest BUT you can have it too. Its a risky, fatal defect with no rhyme or reason. What do you want to do? I cant force you to have surgery” I opened my mouth and started crying about how I dont want this, I had plans, why the death sentence, what If I wanted another baby, will I have a normal life, my kids, my God, what about my kids? I rambled and cried and on and on. He listened and assured me life would be normal with no limitations. It is not a death sentence because I cant die!I will out live him! Its a preventative like an airbag in a car ” You may never need to deploy an airbag in your whole life, but if you do crash, you will live.Same with the ICD. If and when you go into arrest, you will LIVE! Please understand how dangerous this is and although we are not certain you will arrest we want it in place for you. You have a whole family to take care of” “What if i dont want it? What if I dont want this thing, this machine, this man made garbage in my body?” Now he looked concerned…”well that is your choice but I do caution you that this is a fatal defect and I cant guarantee anything. You have children to care for” We just stared and the nurse stared.He rattled off the complications of the surgery but told me they are slim and its much more beneficial to have the ICD.”Do you elect to have this done? Do I have your consent and you have full understanding of all complications?” I snapped “Do you give me a choice? Like I could say no!” I felt bad. Its not his fault. Afterall, he has saved my life. I finally gave in “Yes, I will have an ICD implanted” He told the nurse what to type, I sat there in dismay and shock, angry and sad. He walked me to the front desk and said to the receptionist “Set her up for surgery” The tears flowed again after hearing those words. The cold secretary just looked at me. He patted me on the back and asked me if I would like to see him and sit and talk one more time before its done to calm my nerves and be certain. “Yes! Please doctor!!!” He smiled and said fine and walked away.He said I need to be squeezed in to talk to him again and the receptionist said its not usually done that way and rolled her eyes at me. The secretary just ran her mouth to the secretary next to her as I cried and wiped my tears and mascara. I wanted to grab her by the throat and say “stop lauging and talking and enjoying yourself in front of me! Im 34 and need a defibrillator you heartless bitch!Roll your eyes one more time. I dont care if he doesnt USUALLY see patients before surgery but Im special. Im probably the only damn Brugada patient in this whole freaking practice!!” I just wanted to slap her. a persons life has been ruined and she went on talking to someone else about her lame life, wheres the compassion??? She told me the surgical departmet to one of the best teaching hospitals in my state would be calling to tell me when I will have surgery . It will be within a month and it will all be over…

I walked outside to my car…defeated, old, broken,defective. Life will never be the same. There was yesterday, and now there is today. Death has been stalking me and by the grace of God, death has held out and only by chance did i see the new cardiologist who recommended me to the EP, these 2 together saved my life. The defib wont cure me, just protect me. I will end up like my dad as always forecasted. My heart will stop someday, but this computer will save me. Only because i saw a new doc. God led me to them.Time to tell the family. I sat in the car and sobbed and looked at the world with hate and anger.I watched others drive by and felt envious that they might be having a better day than I was. I want yesterday back….

Calvary (Part 3)

This is a continuation of my article “The Way of the Cross” where I discussed the time period between diagnosis and surgery. Now this brings me to the actual surgery.

March 6th was my scheduled day. It was 9:45 and I was leaving for the hospital, a large teaching hospital in NJ. It was gray and rainy. Of course. I guess it was too much to ask to have a bright sunny day to be in the right state of mind. I felt scared and depressed and the weather just mimicked me.My mother watched my children and my husband drove me. I was feeling fine all morning and felt determined to get this done and over with it. I actually held it together pretty good. Much better than I thought.Despite being very hungry and thirsty because I had to fast, overall I was OK. Then I said goodbye to everyone.That made matters worse. I cried saying goodbye to my kids and Mom. Now its real. Im really on my way to get an ICD! Its no longer a very long nightmare. There is no way anything has changed. All hope that it may be a mistake blew out the window. I grabbed my suitcase, walked out into the light rain and gray skies and cried. Im getting an ICD! I have a defect! I knew it all along but it really hit me at this point as we drove away and I hugged my suitcase like it was a teddy bear. I cried for about 10 minutes and then it just went away.Peace overcame me. My fear mode and denial mode switched to survival mode and strength. I dont know how or why, it just dissipated. Maybe it’s because I spent 3 weeks crying and angry and going back and forth with the decision to get an ICD.Maybe I was just burnt out. No tears were left. All that was left was to be driven to the hospital like a lamb to slaughter, like a prisoner with no choices. Or maybe God or even my father reached down from heaven and gently and peacefully nudged me forward.Calvary awaits…

I walked up to the cardiac lab unit. To my surprise there were many people there all on one unit getting procedures done on their heart. They sent my husband to another room and he wasnt with me which bothered me alot.I was brought to a room with a curtain all around, told to put a gown on and wait. I listened through the curtain to the people next to me on both sides. I can tell they were old. I instantly felt angry. “See! Only old people should be at the cardiac lab! Why the hell am I here?” I sat there disgruntled and annoyed and hungry. Not crying, not sad, just irritated. A nurse came in and had me sign a ton of paperwork giving my consent and saying I wont hold them liable for any problems. They took a family history and some blood, because my age I was required to give a urine sample to check for pregnancy and then I was hooked up to an IV for hydration. I waited and my hunger got worse which compounded with light-headedness and nausea because Im hypoglycemic. Its been 10 hours since I ate. I complained to the nurse and asked if I can get dextrose, which is sugar, put in my IV to get rid of my symptoms. She came in checked my blood sugar by pricking my finger and collected a little blood. She confirmed my sugar was very low and I needed the additional sugar in my IV. That brought relief and helped with the irritability. I sat and waited and noted that 45 minutes has passed since my appointment time.My husband was called to come sit with me. I still was very calm at this point and now even calmer that my husband was near.I actually amazed myself and my husband who is used to my hysteria and tears when upset. My EP came in with a smile that lit up the room and asked “Are you ready?Have any questions?” as he felt around my chest confirming where he wanted to put the ICD. I smiled back and said no and that I was ready. 15 minutes went by and I thought of my Dad and why he wasnt given the opportunity I was. Why wasnt he in a cardiac lab getting a second chance at life? Why me? Why not him? Why not both of us? He hated doctors, never went to see them. But then again he was healthy so why bother. Such a shame. 2 nurses whipped open my curtain announcing it was time. A quick look at the clock showed me I was only waiting an hour. They wheeled me on my gurney and my husband was alongside me. They tried to talk to distract us both. It was working. We talked and even laughed a little. But then we stopped at a door and a nurse advised my husband it was time to say good-bye. That made me terribly sad but I still didnt have a breakdown. How? I have no idea.I guess I was in that “get this shit over with” mode. I kissed him and said goodbye and I watched him walk away as I was wheeled through the doorway. Ice cold air hit me. Nice and sterile and COLD!They wheeled me next to another bed and helped me onto it. I hardly call it a bed. It was hard as a rock and very narrow. Im not fat and barely fit on it. I felt like I was laying on a kitchen counter or something. Luckily I got some very warm blankets out of the dryer. The nurses kept talking away to me. I talked back which kept me happily distracted. Behind me, a new face popped up. It was the anesthesiologist.He asked me a bunch of questions about side effects from other surgeries trying to figure out the best meds to give me. He put a mask on my face and I kept talking. I was literally in that room 5 minutes before the mask was on.They moved nice and quick. I just talked with the nurses about how my family is from the same area they are from, in the city in North Jersey.We were going back and forth.I thought I would be petrified at this point but there I was talking a million miles a minute. Geez, sometimes I can just talk and talk and …..

I can barely open my eyes. My God, the pain. What room is this???I look around through blurry eyes.Im in the recovery room. Sigh….its over. ITS OVER!!! I was out cold, sound asleep the whole time and here I am finished.I cant believe it! The joyful thought lasted a fraction of a second as I yelled out “Im in pain!” The nurse ran over,” Where? Wheres the pain?” “EVERYWHERE! I cant lift my arms. My shoulder blades, my back, the back of my neck and head, my chest! I cant move my arms at all!” Now the tears come on slowly (By the way, I realized days later, all the pain on the back of my body was from the shock they gave me when I was under. When your shocked your body arches up in an arc and slams down. It must have been a real doozy because it felt like I was ran over!) The nurse sat me up and stuck some morphine in my IV. Amazing how quick it works when its right through IV!I looked down at my incision.Disgusting! It looked awful and shiny. It was covered all over in surgical glue. There were no bandages. Just stitches underneath the incision and glue on top so I saw the full effect.I felt like Frankenstein. Fluttering, fast beats, fluttering, skipped beats.Again I yelled, “Im feeling something strange” The nurse at the desk asked what and I told her my heart doesnt feel right. My EP magically appeared in an instant. “Your A Fib!” I looked at the EKG behind me and saw the odd pattern of what looked like ocean waves, no sharp marks or points that are in a normal EKG. It just looked like a slow rolling stream. ” What is THAT?!” “you’re in atrial fibrillation. Its definite” He walked away quickly and so did the nurse. She was on the phone immediately and I can hear she was talking to my husband and I only caught bits and pieces of her sentences…abnormal rhythm, not doing well, different unit, has to be monitored, she will be there soon. What is going on? Everyone told me this is a piece of cake! I was told no biggie! Ill be in and out and awake all relieved and comfy in my room enjoying a meal. A bird was alive in my chest batting its wings trying free itself. I stared at the EKG with its water like waves. My EP came back over and told me I may have to go back under anesthesia , get re shocked into a normal rhythm. I freaked out! He changed his mind and decided to see what will happen and then shock me in the morning. Then he instructed me when I leave I need to see him right away and be put on a 10 day ECAT monitor post surgery (Ive done it 3 times already). What the hell is this? A Monitor? I did all this crap! Im done! I want to relax and go home. What have I done?! Im worse now than before. I shouldnt have done this. I was fine until I got here and now look at me. Ive ruined my heart!!! Of course I didnt say this out loud. I was in too much pain. I wanted this cursed little piece of technology out of me. Then I realized Im trapped! I cant take it off, put it aside, part ways with it. Its deep in my skin and heart. Stuck! It will never come out unless a doctor does it! Im trapped like a rat.It owns me now.I laid there scared and confused and trapped….

2 nurses came and wheeled me away to what I thought would be a basic monitoring unit. It was instead a telemetry unit which is specifically for dangerous rhythms and people who need constant monitoring of their heart. My husband was waiting there. One thing is the room was big and modern and lovely. It was my own room and quiet. I didnt have to share with anyone. They made it look like a little home. They said the couch could be made into a bed if my husband didnt want to leave me. That scared the crap out of me when they said that. Why would he need to stay every second? The 2 that brought me in left and the cardiac nurse came in to introduce herself and tell me the rules. I wasnt allowed to leave bed until 9PM. Strict orders from the doctor that I could NOT walk. She looped a monitor around my neck that was connected not only to the front desk but some other part of the hospital that monitors you constantly. Nurses leave their desks over and over. So they needed a person literally staring at me every second. Again very scary. Later on when I was discharged they took the monitor off. In a second, I kid you not, a second, the phone rang in my room wondering why they lost my heart signal so they really were watching me good.Anyhow, I was afraid because the unit I was on and all the strict orders and constant monitoring. I went in believing this was so simple and safe and now Im on the quiet unit for dangerous cardiac patients. Not to thrilled about that. In my mind I wasnt understanding why. I thought it was because they put the ICD in and something went wrong and I made a HUGE mistake.I thought I destroyed my own heart. Thats not the reason and Ill get to it in a minute. I was laying in this room enjoying the quiet and decor.I was feeling pain but not as bad as before since I had morphine. They rolled in a tray of food. I was starving. At this point I havent had anything to eat in 15 hours. I quietly talked to my husband. I tried to eat but realized the pain was too much despite the meds.I couldnt lift my left arm at all, but Im right handed and the pain radiated across my chest down my right arm. Teary eyed I told my husband I couldnt feed myself. He had to feed me because I couldnt lift my arms.Im a prideful person and this was awful for me.Id rather starve then have someone help me. Im strong and hard headed like that.But the hypoglycemia won and I started to eat a few bites and froze.I must have looked like a deer in a head light or a mannequin because what I felt stopped me dead in my tracks.My husband stopped feeding me and just stared.He must have seen me turn white as a ghost. My heart started pounding faster and faster. It wasnt quite a pound actually, it was like a quivering beat. A massive wild bird going nuts in my chest. A hard fast flutter and quiver. It was the most bizarre thing I ever felt.It was so fast and so hard I lost my breath and couldnt speak. I pushed the tray away, grabbed my chest and tried to talk but nothing would come out. All my air was gone so no words would form. My husband asked if he should get a nurse. I couldnt answer and quickly pointed to the door. He ran out to get the nurse who must have seen the monitor and she came in just as he left. The atrial fibrillation, for whatever reason, had escalated and my heart rate was going up. I struggled to tell her what was wrong and she left for the doctor. Now Im crying, terrified, pulling at my gown for breath and thinking I can some how calm my own heart down like its a separate living thing that needs a loving touch to settle down. I became hysterical and frightened. Its quivering, I cant breathe, my voice wont come out, Im going to faint.The nurse ran back in and said my rate jumped another 30 beats in seconds. She saw I was frightened and hysterical and still not able to talk or breathe and left again. She quickly came back with the doctor.He said “Please calm down. Your heart rate is at 150 and going up in A Fib. Its very scary and uncomfortable but it wont hurt you. Please settle down.I will help you” (Let me add that 150 isnt fast for some people but I have hypothyroidism that gives you a slow beat.Mine is usually around 60 so you can imagine what this felt like for me) Once I heard those words I calmed down a little because I thought I was going to die. Well, not die, I have an ICD for Gods sake, but go into arrest right then and there AFTER I got an ICD. I thought the ICD gave me A Fib and it would be an on going problem because of it. They shot more pain medicine into my IV, Then they shot a calcium channel blocker in my IV to drop my rate and then they gave me a tranquilizer to further drop my rate and stop the hysteria. Everyone sat and watched. I felt like a fish out of water, waiting for air, waiting to breathe, waiting to talk. Slowly the medicine began to work and with a struggle I can speak in short spurts as oxygen came back into my lungs.The tears stopped, the air flowed in and the butterfly in my chest lightly played with its wings now. I could speak and breathe again….

“Whats happening Doctor? Why is this happening? I thought this was easy, simple, no problems. Ive never had this before! Why now? Is it because the ICD? Is this some horrific mistake? Will I forever more have bouts of this because an ICD and it wires cling to the inside walls of my heart?” He told me its very common and its common in Brugada and they will continue to monitor it even after Im discharged to see if I will always have bouts of A Fib. BUT, keyword here, BUT…many people are very taxed physically and emotionally by ANY kind of surgery that in turn taxes the heart and causes A FIB. Even in people who dont have heart problems. He said it could all be because of the surgery and can disappear. In the mean time they will break the A Fib and get me back into a normal sinus rhythm by using Cardizem until the following morning. Cardizem may break it or I may break into a good rhythm on my own. Or, neither may work and the following morning at 7 AM I will be brought back to the cardiac unit, put under anesthesia and shocked back into rhythm. I just sat there stunned. Drained and tired, in pain, hungry and stunned. Fear lingered in the air with the smell of the food that sat there, despite not eating for 15 hours. I now wanted no food at all. My appetite disappeared. I felt better, aside from pain, which was horrific but just laid there now with my husband. The monitoring went on and on, hours passed, we just talked. There would be no visitors. My kids couldnt come and see me and were upset. My mother was very upset but she had to continue to babysit. Night was coming and what we thought would be a night with relief and smiles and the feeling of good things to come turned into worry, IV drips, meds and more meds, no children, no visitors, no food….I was back in a nightmare. What have I done? Did I further damage my heart? I signed my name on the dotted line. I sold out my heart for this…

I started to get a little hungry a few hours later. Pain was present, fear was present but my blood sugar was screaming. I was probably close to 18 hours with no food. The nurse came in over and over and told me “You better eat because you have to fast again tonight in case you need to get shocked in the morning. Eat now while you can” Fast? Agian? There is no food in me at all! Good Lord! My husband left to get me food. I ate a danish. Thats it. Anyhow, the nurse came in with a smile and said “Your back in sinus rhythm!!” What a relief! It crashed down on me and I smiled for the first time all day. Thank you Jesus! But….theres that damn word again…BUT!!! It can be because of Cardizem. Once we stop it, you may go back and still need to be shocked so still fast after midnight. Relief left the room as fast as it came in. Was it good news? Yes. But would it last? We didnt know.Hurry up and wait….

Slowly my heart rate and pressure dropped from the meds a little at a time. Too much.As bed time came around, I said good-bye to my husband. I really wanted him to stay but my children needed him. He didnt want to leave and looked very upset to leave me in that condition but he had to go. I told him it was fine and I would call or text when I could but planned on sleeping. We set up a time schedule to check in with each other, when I will let him know if I need to be shocked, if I need to be shocked, if Im getting discharged, etc. We said goodbye. I laid back in the dead quiet, dark room. I guess it has to be this quiet. People are in serious shape on this unit. I called for the nurse to help me to the bathroom and get more pain medicine. She informed me that my pressure had dropped even further and she cant give me morphine. Motrin will have to do. Oh joy! Sleep without morphine. This should be interesting. My rhythm is better but in turn I cant take pain meds. Why is everything going wrong? I ate a little piece of a brownie and said good night to my nurse. Yet again I lay looking at the ceiling crying. I was so disappointed that I wasnt having a sleep full of relief. I so wanted to be relaxed and happy it was over and that I will go home and life will go on. But all I could think was …A-Fib, shock in the morning, it could come back, telemetry unit, pain, no morphine. Somehow I drifted asleep but not for long. My skin and incision screamed out, my whole body ached….

The nurse had to check on me every 2 hours. Vitals had to be done EVERY 2 hours.How do I sleep like this?? I tossed and turned with pain and bad thoughts mixed with sleep and light dreams and 2 hour check ups. Around 2 am the nurse came in, but this time besides just taking my vitals she told me my pressure was in the 80 over 40 level and getting dangerously low and she contacted the doctor right away. “I might need to stop the Cardizem and A Fib might come back now.” I was half asleep and nodded okay in terrible pain. Pain meds were definitely not an option and now she says this garbage. I briefly thought “I hope the shit doesnt hit the fan all over again at 2 am” and drifted back to sleep not even caring any more. By four I was holding steady without Cardizem. “BUT DONT EAT OR DRINK!” By 6, I was still in normal sinus rhythm but “STILL FAST!” 7 AM came and I heard the trays of breakfast coming. I sat up and was actually excited. Im in normal rhythm despite no meds for hours.Its now been 30 hours since my last meal except for a danish and a piece of a brownie. I was famished beyond words. I heard the big refrigerator rolling up and down the halls giving out trays to patients. I waited and waited. The sound of the wheels disappeared. Breakfast wouldnt be coming. They havent fully decided on what to do with me yet. I think they felt it was best to let me go longer without meds and see if I maintain rhythm just in case I went back into A Fib and needed the shock, so the fasting continued.Fine! Figures! I hate this place! I hate my body! If you wont feed me can you give me some damn morphine!? (From what I read its more painful for women because they have to move more around, skin, fat, mammary glands. Plus Im buxom so the weight of my chest pulled and yanked on the incision like a weight hanging there. Sorry if its too much info but I was in serious pain!) My pressure was still low but not dangerously low so I got my morphine. I laid back starving but had some pain relief and just waited. And waited and waited….

I think it was around 9 it was announced that my rhythm has stayed regular for hours, despite being off of Cardizem and, Hallelujah, Im going home. What a relief! Its over! The whole dame thing, that Ive been tormented over for 3 weeks is over! This bull shit unit and all its grief is done! Its all finally a thing of the past. Time to go home, hug my family, thank God for the second chance, heal and move forward. I was so happen to take off my heart monitor, get the IV out of my veins and go to the bathroom alone. I washed my face and brushed my hair and got dressed in agony and waited for the doctor to come see me one more time and give me instructions before I go home. Of course that took time so I waited anxiously. My husband came to pick me up with a bunch of balloons and a teddy bear. I might add, even though they said I was in normal rhythm and didnt need a shock, they forgot to offer me food. I was still in fast since midnight. And the day before I barely ate because of A Fib. I didnt eat until I got home at noon. So in 36 hours I only had a danish and a brownie. I was dying of starvation by time I got home. Anyhow,I got my discharge instructions, a prescription for antibiotic, percocet and cardizem which I have to always carry now and take as needed when I feel “fibby”. They wheeled me out of the hospital in a wheel chair with my balloons and bear. It reminded me of when they wheel you out after having a baby and you hold on to your bundle of joy and are soooooo excited to start life with your little baby. Sadness hit me at once. Im not being wheeled out as a new mom in love with her baby. Im being wheeled out, empty handed, no baby, just a machine in my heart, that yes, it will save my life but for the time being I hate it….

The Way of the Cross (Part 2)

I wrote the story of my diagnosis already but not what happened afterwards. To read the story of my diagnosis please see “My Story” at the top of the page.I was diagnosed on February 15th and surgery was March 6th. I had 19 days of mental torment, torture, disbelief, crying, denial, anger. I froze.My life froze. I didnt want to eat, cook, clean, go out, go to the gym, do the things I usually do. I suffered and read and cried and googled all day and night. I woke up scared to death and went to bed even more afraid wondering if I would wake up. Like Jesus, I had a heavy cross on my back and carried it day in and day out, getting heavier, wearing me down, breaking my stride, leaving me face down in tears. I couldnt throw my cross down and walk away. I couldnt change it. Fact is fact.I have Brugada and need an ICD. So I picked up one of the heaviest crosses I ever carried and went on to my own personal Calvary of staring at the ceiling in a hospital waiting for sleep to overcome me and them cut me open and place a machine in me like a robot or a car to sustain my life

Most of us here were diagnosed with something we never heard of right? How many here can say when they were told they had Brugada they said “Oh, I know all about it!” Having a relative have it and then finding out doesnt count. I mean the people who never, ever heard of it. What did we do!? Come home and run to the internet to find out all we can. We became little books filled with facts about Brugada. We overflowed our brains with fact and death and scary shit. Does anyone deny it? I did it! All I found was statistics, and death….sudden death, cardiac arrest, dead in your sleep, dead anywhere, is dead, was dead, death, die, will die, might die…Everywhere. Depressing is putting it lightly.The phrases that suck hope out continue…no cure, no prescription, ICD is the only way, hereditary, check your kids, spreads like wildfire in the genes, fatal, rare, unknown, no treatment, lack of experts, shocks, painful, inappropriate shocks, etc.Let me tell you something, you read that stuff day in and day out and you become a mental case, the crying, the depression, the sadness and fear grip you and squeeze the life out of you like a boa constrictor. Your barely breathing your so scared and so smothered in fear. Then I hit the point of “I cant wait to get this thing in my chest!”

Although I lived for 34 years like this Im now suddenly all to aware that when I close my eyes at night it can be the last time I see my surroundings. I laid in bed each night, stared at my room, stared at the baby sleeping next to me, stared at my husband….what if I dont wake up? What if this is it? Needless to say I was only going to sleep with the help of prescriptions but at the same time DIDNT want to sleep. It was a tug of war in both directions…close my eyes and maybe death comes so I should stay awake! Or go to sleep and risk it but I will be one day closer to a remedy. This happened every night. I generally woke up and kept busy and had a brighter outlook….Im lucky they found it. What a damn shame my Dad wasnt so lucky. I tried to keep busy but my mind kept thinking and running like a hamster in a wheel in my head….What if I die here right now? What if the kids see me? What if Im in the shower? What if Im driving? I got to get this surgery done as soon as possible!!!! Then my alter ego would come out and say “You dont have this! Its a load of shit! They dont know what they are talking about! I dont have symptoms! Maybe they are wrong. Thats it! Im not getting it! No one is slicing open my arteries, threading a wire into my heart and sewing some electric box up in my skin! IM NOT GOING!” This was my days, back and forth… “I want it! I dont want it!” I drove my family nuts. I am VERY strong-willed and stubborn. Nobody can make me do something I dont want to do. So when I said Im not going, they knew I meant it. It was turning into a love hate relationship…I love that Im getting an ICD, Im lucky, I will live, I dont have to die like my Dad. I cant wait until its over! But then it switched back to… I dont need or want it!I lived this long!Screw it! Im ignoring it! I need a second opinion (which by the way was THEE Dr Brugada who looked at my EKGs and told me “Im sorry but you are positive, a Type 1”)

So this is how 19 days went. It was an emotional roller coaster.I touched on every emotion God made. The hardest part is they were never consistent. I wasnt sad the whole time or happy the whole time.I was all over.Crying was a daily occurrence, arguing with my family on should or shouldnt I was a daily occurrence, praying my heart out for my children was a daily occurrence. I lost 19 days of my life not wanting to face the truth when I should have just held my chin up and do what I needed to do. I dont have that type of personality that remains calm and unwavering like my husband. Hes amazing like that.I have to be a ball of nerves and emotion and drama. Oh well!I am who I am and when someone tells you while looking you in the eyes “I need to save your life”, how is someone REALLY going to react? In hind sight my reaction was normal. Totally normal. You cant go from healthy to staring down the barrel of a gun and NOT feel something. My best advice is let your emotions run a muck, let them out, feel every emotion you need to feel, purge it all out and eventually you get to a point of peace and determination. Im well on my way…