Brugada Girl ™

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….