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….

6 Comments (+add yours?)

  1. carla
    Apr 16, 2013 @ 06:13:05

    Cara Alicia, leggo sempre la tua pagina e, anche se la traduzione lascia un po’ a desiderare, mi piace tantissimo ascoltare la tua storia e da te traggo aiuto e ispirazione…. la mia grande paura e’ legata alla giovanissima eta’ del mio bambino…. il 4 maggio saranno 12 settimane che e’ stato operato e io guardo la sua cicatrice e il suo “CIP” e mi sanguina il cuore…. molta strada dobbiamo percorrere, molto sara’ il tempo che dovra’ passare per accogliere il dramma che e’ capitato…. a te auguri affettuosi… un abbraccio.


  2. carla
    Apr 12, 2013 @ 04:48:15

    No Alicia, non sono su facebook ma se vuoi possiamo parlare su questa pagina… ne sarei felice…


  3. carla
    Apr 11, 2013 @ 15:46:24

    Ciao cara, non so se riuscirai a leggere in italiano e come sara’ la traduzione ma vorrei dirti che ti sono vicine e che ti trovo molto tenera e dolce …. sono la mamma di un bambino di 12 anni che ha la sindrome di brugada e che ha subito l’impianto di icd da quasi 10 settimane…. e’ per me l’esperienza piu’ devastante e terribile che ho vissuto. Tutto e’ successo molto velocemente e tutto e’ diventato buio… ho implorato Dio affinche’ rispiammasse mio figlio, l’ho pregato di farlo impiantare nel mio petto…. non mi ha ascoltato , …. di solito non mi ascolta..
    Ora dobbiamo imparare a convivere con questa nuova realta’.
    Faro’ ogni cosa possibile affinche’ mio figlio sia felice, faro’ di tutto per rendere la sua vita serena e meravigliosa.
    A te dolce amica auguri di gioia e speranza con la tua stupenda famiglia. LOVE.


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