Mar 11
Jazmattaz
Jazmattaz , Posted on SUPPORT NETWORK Blog

The Day The Lights Went Out: My 2 Year Journey

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I would like to share my story with the world. As I still struggle with my conditions to this day, I am hoping this will educate the world about eating right and living right. You can’t take things for granted especially your body. It’s a lesson I am still learning today. I am going to tell a lot of very personal stuff in this article. Personal stuff that no one knows about. But if it helps educate another person then it will be worth it.

 

On the evening on May 11th, 2017 I came home from grocery shopping. I live on the second floor in a 3-family house and just carried a bunch of bags up to my apartment. I suddenly just fell on the ground. I have no idea what happened or how long I was out. My only memory is that when I woke up, I was looking for my dog Milo who is a Yorkshire Terrier, so he is small but loud and is always by my side when I am home. So much that every time I come home, he is overcome with joy that he always jumps on my legs. I was happy to learn that I did not land on him injuring him or worse. After passing out when I woke up, I felt okay. I honestly don’t remember anything about the incident. I do remember me being the crazy idiot I am calmly putting all my groceries away and packing a bag. I walked downstairs to the tenant on the first floor who happens to be a very close friend of mine and he called 911. My mother was in New Jersey babysitting her grandson and my other brother lives in the upstairs apartment and he was not home from work yet.

Upon getting to the hospital my mom met up with me and over the next couple of days a lot of testing was done to me. My memory being cloudy right now I remember being told I was A Fib and I needed a valve replacement eventually. To be honest I knew I had a heart condition. I don’t want to say I ignored it or didn’t take it seriously but that is probably the best way to describe it. Being a big guy who at times does not eat right and liked to drink a lot surely this did not do anything to help my cause. I was 42 at the time and I figured this was too early to have such problems. I always figured I would have plenty of time to turn this around and never really did anything about it.

On May 15th I was home for one day now after my brief hospital stay. I remember feeling better and I felt with the doctor’s consent I was good enough to return to work the next week. The next series of events changed my life forever. These are issues I am dealing with now almost 2 full years later. I was sitting in my apartment at my desk going through my emails and checking on my fantasy baseball teams. When I suddenly passed out again. Surely something was very wrong. Again, the crazy idiot in me took a shower before calling my mother to call for an ambulance. That was the last thing I remember from May 15th to probably May 24th or 25th and still to this day it’s only very small pieces.

Upon getting to the hospital on May 15th my condition was now considered serious. It was serious enough that I was getting sent by ambulance from a hospital in Brooklyn to NYU Langone in Manhattan, one of the best hospitals for heart care in the world. All of what I am writing is based on what I was told to me by my mother and my doctors. I was being sent to NYU to have a defibrator put in me to shock my heart back to normal when my heart beat gets irregular. Moments before the surgery it was being explained to me what was going to happen. My mother tells me you were out of it and kept saying just do what you have to do. When it was explained to me, I was going to need a tube put down my throat I freaked out. I have had surgeries before, a broken elbow joint and a broken ankle and fibula so by no means was I afraid to have surgery. I guess my current condition was a lot worse than anyone really knew or understood.

While I was on the operating table I went into cardiac arrest. I flatlined. For how long? I really don’t know. Somethings you just don’t want to know about. The doctors were not going to let me die. They kept trying to bring me back until they ultimately did. Two weeks later I complained to my doctor that my ribs were hurting me badly. Me the idiot not realizing those were from the paddles shocking me back to life. I was then in a coma for an unknown number of days. I am not even sure if my condition put me in the coma or if it was induced. Once again, some things are better not known. The doctors told my family that the only reasons I was still alive is that they were not going to let a 42-year old man die so easily and if this had happened anywhere else, I would have died. If it happened in the ambulance I would have died. If it happened at the previous hospital I would have died. Faith had put me at this place at this point in time for whatever reason. Friends and family have often asked me if I saw anything when I was flatlined. Honestly if I did see something, I have no memory of it. Maybe it is for the better that I don’t remember anything.

A lot of these details have not been told to me and I honestly haven’t asked. I just don’t want to know about it. Being in a coma whether induced or not is certainly a major thing. It is never a guarantee that you are getting out of it. It Is never guaranteed that your mental capacity will be the same. The fact that I was able to wake up and still be able to live a normal life or as close to normal as I could have is a miracle enough. The first memory I have when I woke up is one of my brothers just staring at me and he had this big Dunkin Donuts coffee cup in his hand. My brother is not someone who talks a lot and he certainly does not have a way with words but he asked me one question. “Do you want me to tell you now what happened or I could tell you later? But I am going to tell you eventually.” You always hear doctors saying that you need to talk to people who are in comas. That they hear you and need to hear your loving words. I do know there was no shortage of people talking to me while I was in a coma and I be damned if I remember one word of what was said to me.

Once I got out of a coma did, I realize the seriousness of my condition. But I really could not comprehend it. Mentally I was “not there” as some of my friends described it. You always worry about what this does to you mentally. I can say without any doubt that mentally I am still suffering the effects of being in a coma. I lost a lot of lack of concentration. I lost the ability to focus mentally for long periods of time. So much that in my line of work it’s still hard to this day to keep my focus to complete tasks. My memory is not as good as it used to be either. I often forget simple stuff and my short-term memory is not very good. But hey I was happy and lucky to be alive and still had obstacles in my way.

The doctors were not able to put the defibrator in me due to the cardiac arrest and I was not going to be discharged from the hospital without having that surgery. So, on May 30th that surgery was scheduled and successfully completed without any incidents. The doctors that saw and brought me back to life were amazed I was looking so good after the coma. They all asked me playfully if I was going to behave this time. As I stated before, having surgery does not scare me so I was surprised that I reacted that way just two weeks ago. Amazingly I remember waking up during the surgery and hearing the doctor talking about his anniversary and what kind of gift he should get. I then was complimented on my tattoos. I was finally discharged he next day. I was anxious to get home and rest in my apartment. I was anxious to see my dog who missed me terribly.

I really need to acknowledge the doctors, nurses and the physical therapists at the Tisch Center in NY for all they did for me. The doctors for bringing me back to life. The nurses for their round the clock care especially when the smart ass in me came out after the coma when I had to use the bathroom for the first time on my own. As my mom tells the story I said I needed to do # 2 and when the nurse came over with a bed pan, I said I am not a cat and I don’t shit in a box. For the physical therapists who had to teach me how to walk again from laying down for so long. I was pushed really hard and I remember the very first day when Danielle and I wish I remembered her last name really kicked my ass to get me to walk around. She was Italian like me and really rode me to start walking. I only wished I had the mental capabilities to remember her last name so I could really thank her.

You would be surprised to find out just how long something like this really takes to sink in mentally. It will be 2 years this May and it never fully sinks in. I remember asking myself is this something I could have prevented. If I took better care of myself could I have prevented it. I was always a big boy but played organized sports from when I was 3 years old until my twenties. Granted in my twenties it was softball and mostly pickup games or coed company leagues. I do like to work out and had several stretches where I was very dedicated and results were obvious. I loved drinking beer and could consume a lot in one evening. I never considered myself an alcoholic and to this day this is not how I would describe myself. An abuser is a better way of putting it.

The realization was that I was living with a damaged valve in my heart. I have a Bicuspid Aortic Valve. This is when the valve has two flaps instead of the normal three. It is something I was most likely born with. It still does not change the fact that I was my own worst enemy in life. Perhaps if I lived better this would not have happened when it did. Oh, I was told this problem would have eventually showed up at some point in my life and would eventually have to be fixed.

So, my Cardiologist sent me back to NYU to talk with a specialist about the next steps. Upon going to see the specialist I was not nervous. After all what could possibly happen to me that was worse than what I already went through. I was expecting and hoping to have this valve replaced. Let’s get this resolved as soon as we can was all I was thinking. The doctor sat me down and said you need to have your valve replaced. He was aware of my problems. After all I only use NYU affiliated doctors and my whole history is in their website. The doctor gave me 2 choices. I could have a flesh valve which is good for 15-20 years before it needs to be replaced or I could get a metal valve that lasts forever. Hmmm so do I want to go through this surgery when I am in my 60’s or just once now and be done with it. I am a divorced man with no kids and would not have been able to get through this without my mother. Women are definitely stronger than men in any crisis. Who would be able to help me if I had to have this surgery again? There was one caveat though. By picking the metal valve that means I would be on Coumadin (Warfarin) for the rest of my life. The doctor explained to me what that meant and how living on Coumadin was really a way of life. So, I still chose the metal valve. Living life taking Coumadin is no joke. More on that later.

I can’t even imagine how it feels to be a surgeon and in this case a heart surgeon. I could never do what these doctors do every day. The ability to save a life has to be so empowering. So, if a doctor comes off as arrogant it’s probably a good thing. My heart surgeon assured me of two things. The first one is I have no worries. This procedure has a 99 percent rate of success. The second thing was that he was giving me my life back. And truthfully, he was. Because of this leaky valve my heart was only working at a percent in the low 20’s. Normal people are between 40-50 percent. This surgery got me into the low 40 percent range. I was told that the second I wake up from surgery I will feel a big difference and boy was he right. My doctors told me there was nothing more they could do for me and it’s now up to me to make my life right. After talking to my surgeon, the first time It made me think about that famous scene in the movie Malice starring Alec Baldwin when he gave his god complex speech. I guess what I am saying is that we need to listen to the doctors and follow their instructions no matter how we feel about it.

One of the hardest things I realized and it’s not something you actually think about until it happens to you is what this does to your family and friends. To awaken from a coma and just to check my cell phone and see all the texts from friends that were worried about me. They knew something was wrong but they didn’t know exactly what it was. As powerful as social media is this did not make its way to my Facebook page. In fact, I learned that my brother did not want any mention of this on Facebook and instead any information on my health was to be released by him. His words were “when my brother wakes up, he can post it himself.” My page would have definitely been flooded with many of my family and friends looking for info and to give me kind words. So, as I was to embark on this surgery, I had made a list of people I wanted my mother to reach out to on my behalf after the surgery was over since I was not going to be able to answer any texts for a day or two. I wanted them to know I was ok and resting and would be in contact once I was a little more normal.

On July 26th I had open heart surgery. Everything went extremely well and I was home by July 31st. It’s amazing how fast they get you walking and resting at home. I have to say recovering from the surgery was really not as bad as I thought it was going to be. To get to my heart my ribs needed to be cracked open and my muscle needed to be cut. The pain you feel in your ribs post-surgery is the worst pain I have ever felt in my life. But it gets better. I was lucky it was in the middle of the Summer so I was able to walk around the neighborhood as my doctor prescribed. I couldn’t imagine walking around in the cold weather.

Since I have a desk job I was back at work by mid-September. This was very positive for me despite not being medically allowed to work out. I was extremely looking forward to getting back into the gym now that my heart was 20 percent better. I had to settle for getting back to work. But still mentally I was just not right. All the events of the last few months were starting to come to light. Not everyone knew what had happened to me and I wanted to wait until my birthday on September 19th to make my first Facebook and Instagram post about my condition. Then a little over one week before my birthday I read a post on Facebook about an ex coworker and a friend who had suddenly died of a heart attack at 50 years old. You would be surprised how this affects you when just a few months earlier you were spared this fate. This friend was in much better physical shape than I ever was and he ran marathons. I remember a few days later I was going to a work function and running into my old boss. I had planned on telling him and others what had happened to me. But the thought of my friend’s passing made my story seem a little comical.

From that point on my mental state went from grateful and happy to get this wonderful second chance to how did I get spared from death and not him. All of the issues from my death and resurrection came at me all at once. After all I never dealt with it or came to terms on what happened. I saw myself get into a dark place but I was hiding it very well. Only a couple of people really saw it in my eyes. I didn’t care about anything. My attitude was that I was dead already once before and there is nothing worse that can ever happen to me. That is not a very good attitude to have.

I did post about my condition on my birthday as I had planned and a lot of people that didn’t know about what happened flooded me with well wishes and encouragement. I still felt it was important enough to let my friends know what happened to me. One girl who I knew for a while and had a similar experience told me I was brave to let the world know what happened to me. She also said that she was trying to figure out if and how to do what I did which was to let the world know what happened. We exchanged stories and she did eventually tell her story. I remember telling her it was a good thing to let the world know what happened to her. This is a friend that I should have stayed in better contact with once I knew what she went through.

I remember taking a vacation to Miami in November of that year. I wanted some alone time to think and reflect on what had happened to me. I did see family and friends down there. I also got to see my favorite college football team Notre Dame get slaughtered against Miami. But I was alone for more than half the vacation. South Beach was always a favorite destination my friends and I would go to every year. Here I am staying at the biggest party hotel the Clevelander at 43 years old now completely sober drinking seltzer and cranberry juice and reflecting upon what had happened. I would think about my friend who passed away a couple of months earlier. I thought about how 3 of my close friend’s fathers died in August and September. There was so much death around me. Let’s just say this was not the best vacation I ever had. But nothing could prepare me for what happened when I returned to New York.

I just got back to my apartment when I got a phone call from a friend. Isn’t it amazing how the world is right now? We all do so much texting with each other that when the phone actually rings you get a bad feeling. My friend had called me to tell me some bad news that one of our good friends had passed away that day. This was another case of a heart attack taking someone away who was too young. I had over the last few years re connected with this friend and became close to the point where he asked me if I needed help paying my bills while I was out of work recovering. I remember the talks we had watching football on Sunday’s at our spot. He would tell me all the time how proud he was of me for quitting drinking and taking better care of myself. You just don’t forget about moments like this. I still have the last voice mail he left me in my cell phone.

Even with the holiday season upon us I still didn’t feel right. But you just get through it. I thought there was no one who could ever really feel or understand what I was going through. I didn’t feel alone. I just felt like no one could ever understand what I was going through. I grew tired of explaining the same story over and over again. I knew I needed help.

So, in February 2018 I went to see a therapist. It was truly an amazing experience. I got out a lot of what I was feeling inside. After the first session the therapist emailed me and said she hoped I would decide to continue the sessions. Without going into much details but we spoke about my condition. We spoke about my pending divorce. We spoke about all my insecurities and issues I have in my life. I could go on and on about this. But I will say going to therapy got me over the hump. I got a lot of clarity about life from these sessions. My therapist wasn’t afraid to challenge me or ride me when it was called for. I know there was a little disappointment that through all the sessions that my guard was not totally down and I never cried. I am just not a crier. I have gotten more emotional over the years and do appreciate these kinds of moments now whether they are good or bad. I was going all out in the gym too and the results were showing. Everything was going great for me.

Living a life on Coumadin is not an easy thing to do. The doctors make it sound simple. Like all you need to do is listen to them and all will be okay. Truer words have never been spoken before. For those who don’t know Coumadin is the strongest blood thinner on the market. It is necessary for anyone who has a metallic valve like me to take this drug every day for the remainder of their life or until something new gets created. For the medical definition of Coumadin please see below:

COUMADIN (warfarin sodium) tablets and COUMADIN (warfarin sodium) for injection contain warfarin sodium, an anticoagulant that acts by inhibiting vitamin Kdependent coagulation factors.

For an easier definition you have to watch your vitamin K intake. This consists of mostly leafy green vegetables such as Spinach, Kale and most kinds of lettuce among other stuff. The other really critical element is that your INR blood level has to be checked regularly. My doctor has always told me the level needs to be between 2.0 and 3.0. Anything lower and I am at a huge risk for blood clotting. Anything higher and there is a danger of excessive bleeding. Sounds easy enough right.

First, we started by getting a blood test once a week. That lasted about 4 to 5 months. Under doctor supervision the frequency started to change to once every 2 weeks then once every 3 weeks and finally once a month. If your INR levels were changing you wouldn’t feel anything. You wouldn’t know the difference until something bad happened. So here I am feeling great and going to the gym regularly. Whether it was going right from work or on weekends where I would walk 20 minutes to and from the gym for extra exercise. I was feeling great. It is your responsibility to get your levels checked. Your doctor won’t call you and tell you it’s time for another blood test. Guess what this crazy idiot did or didn’t do. I hadn’t checked my level in a few months.

Two days after Thanksgiving I was hanging up Christmas decorations outside of the house. I remember specifically of wanting to be done by 7 PM the latest so I can watch the Notre Dame football game at 8 PM. As I took a step off the ledge into my garden, I felt a head rush. Something didn’t feel right. I thought maybe my sugar level got low and I needed to get something sweet into my system. I remember making my way up the stairs to my apartment and sitting down at my desk. I was trying to log into my computer and could not remember the password or which key was what. Milo was barking and I called to him to keep quiet and my mouth was moving but no words were coming out. I was like whoa what the hell is happening. I laid down on the couch and closed my eyes and felt better an hour later and continued along with my night.

Then this crazy idiot wakes up the next morning and I felt ok but not 100 percent. I got some iced coffee and did my normal Sunday routine of watching football at my spot. As the day went by, I remember feeling a little out if it. I get home and still was not feeling any better. So, I make a decision that if I don’t feel good in the morning I will go to the hospital. The next morning, I get my mother to drive me to the Emergency Room thinking there was something wrong with my heart. For anyone who is not aware the heart will trump any other medical ailment you might have. Especially for someone like me who has an extensive history. Going to the ER to complain about your heart or anything to do with it and you’re staying overnight. It’s automatic. So, I packed a bag with the essentials. Change of underwear, phone charger, headphones, tablet, deodorant, and toothbrush. I even packed an extension cord to make sure I can charge all my devices.

In the ER I go through all the tests and the last one was a Cat Scan. The nurse comes to me and says you had a stroke. My exact words were “get the fuck out of here.” I mean after all I walked into the ER on my own. I didn’t lose any motor skills what so ever. My INR level was at a critical level of 1.0. To put this in perspective it took almost 4 full days of pumping drugs into me to get my level to 2.0. What I was thinking well obviously I wasn’t thinking but how could I let myself get into trouble on such an easy thing as taking a blood test. Man, that was stupid of me. Perhaps this incident could have been avoided. Sometimes things happen for a reason.

I now am set up to take blood tests on my own. It works like a charm as I check my blood level twice a week and upload the number from the machine to an app. It in turn gets faxed to my doctor so he can call me if he thinks I need to come to see him or just say you’re a little low so take another pill. This crazy idiot has dodged another bullet. This makes 3 now. I must be a cat that has nine lives. Let’s hope we don’t find out if that is true. I recently told one of my doctors that I regretted getting the metallic valve and should have went with the flesh valve. At least I would not be on the Coumadin. He just said there is no wrong answer and you are now taking the necessary steps to check your levels on your own.

You always wonder about the mental aspect of suffering s stroke. After all it is more trauma to the brain. In fact, I do believe this has yet again did damage to me mentally. I mean from the lack of concentration stand point and staying focused on a task. That has really taken a hold on me. The perfect example is this article. It has taken me 3 whole days to write it. Mentally I can’t just sit down and write this without getting distracted.

I am well versed by now of having several doctors caring for me. All have different specialties. When I saw my regular doctor in December 2018 and January 2019 and told him I was getting dizzy and light headed. What did he do? He gave me a test and sent me to my cardiologist. My cardiologist gave me a checkup and said your heart is fine and it is probably stroke related. I go to see two different stroke doctors to check out my head. I fully understand when it comes to head trauma there is no real fool proof test I can take. This crazy idiot was just happy to know I had a brain in my head as my choices and decisions don’t indicate that I do. Both doctors could not find anything and have said stroke symptoms don’t go away so quickly and it could take up to 3 months.

The day after the Super Bowl I return to work after being out since Thanksgiving. I wasn’t 100 percent, but I felt well enough to get myself back to normalcy. I spent 2 and a half months sitting on my couch as I was battling through this. All that I had worked so hard to accomplish was all gone now. To be perfectly honest it had started to go before the stroke. I am checking my INR level when needed. Everything looks fine with that and I vowed to my self to get out in front of that. I really want to get back into the gym, but I knew I needed a little bit more time to heal. Two and a half weeks later my dizzy spells return, and I am light headed again. So, I am back for more testing. At this point I am feeling a lot of things. I am annoyed, I am nervous, I am aggravated and I just need answers. Now being out of work again I am starting to feel useless and that I never will be able to live any kind of normal life again. My tests showed extra heart beats. I wore a holter for 24 hours. A holter tracks your heart beats. The results are showing that my heart is generating almost 500 extra beats an hour causing my dizzy spells.

Obviously, I can’t work out feeling like this cause of my other conditions and honestly, I was not in the gym with the same fire since before the stroke. All of the positive results I worked so hard to achieve are all gone now. I am sitting here wondering what is going to happen to me. Did I just cause all these new problems because I wasn’t checking my INR levels? I am sort of going back to that dark place that I fought so hard to run away from.

I feel it’s important to get my story out and to listen to other’s tell their stories. I often ask my therapist how come I could quit drinking so easily when my medical problems started to happen but can’t seem to get the other stuff under control. She keeps saying that it is a really big achievement to just stop drinking after so many years. A lot of my friends have asked me if I was really done with drinking. It’s not that they don’t support me. I think it’s more about being curious. And it is really a life changing experience. Going out to bars just does not feel the same anymore. I often feel out of place. Just not holding that beer bottle anymore makes me feel naked.

The doctors have said I could go out and have a drink or two. But that’s not for me. I am not a one drink guy. I never saw the point of having only one drink. Prior to my illness I can’t remember there ever being a time I was in a bar and not being drunk. Growing up in Brooklyn it was quite easy to get beer or alcohol. I remember going to liquor stores when I was 14 years old and not getting proofed. In fact, I was proofed for the first time when I was 21. When telling this story to my co workers who are not from New York I had to explain to them what being proofed means. It just means my ID was never checked to see if I was of age to drink. I have no doubt my years of alcohol abuse contributed to my health problems now.

But you must learn from your mistakes and push through. I decided to write this to cleanse me and to motivate me and others. I am 44 years old and in no way is my life over. We are going to figure out what is going on and I am going to have to work hard to get back on track. I am writing this for the American Heart Association which is an organization I am embarrassed to say I have not done my part in supporting. That is going to change.

I am here today wondering what is happening to me as I prepare for another test. Will I ever be able to get through this? Will I get myself back to living a normal life? Because right now my life is anything but normal. I am unable to consistently go through the day without getting dizzy or light headed. Have all my past issues now finally caught up to me? Will I get one more chance to turn this around forever? The moral of this story is that you can never give up and never stop fighting and never stop working. No matter what happens in your life. No matter how hard a day you had at work or how tired you are. Just keep working and everything will be alright.

You never truly know what will inspire you. Things just seem to happen. You must hold onto those inspirations and keep them fresh in your mind for when you need them. I hope my newly found inspiration stays with me. I hope it guides me and gives me the strength to turn this around. And when I turn this around, I do hope to thank that inspiration for all I have accomplished.

4 Comments
  • AHAASAKatie
    AHAASAKatie,

    thank you so much for sharing your story with us! I think you have a great deal to offer our membership and encourage you go look through the conversation forums for discussions that you want to join! Best Katie 

  • Wleishman
    Wleishman,

    Hi Jazmattaz

    I can relate to everything you said. I had a mitral valve repaired on May 29th 2017 and an expected 5 day stay turned into 2 months. You can read the details in my survivor story.

    Going through these experiences really opens a persons eyes. I do not take life for granted anymore and little things that use to piss me off don't bother me anymore. 

    Like you I have a desk job. My work keeps me busy. At this point my health has stabilized but I will not get back to 100%. I think my heart function is about 30%. I have some heart muscle damage that occured sometime during my 8 hour surgery. The meds I take help with my heart function. I also take Warfarin because during or after the surgery I had mini-strokes  and I'm still at risk of blood clots. I will always need to take medication for my heart but what can you do. The biggest problem is between the ears. I tend to worry knowing what happened to me and what might happen to me. It's hard to not think about it.

    Take care.

    Wayne

  • rtrigo
    rtrigo,

    Thanks for sharing your story.  I'm just starting to go through and read everyone's survival stories and I'm just moved by how positive folks remain despite thier setbacks.  My story isnt anywhere near as bad as yours so I won't even go there.  Your story however has made me realize I need to quit being a whiner and get off my butt and do something.  I was spared for a reason and should enjoy that I'm still here with my family.  I am glad you were spared, too.  I'm sure you have alot of hard days but you seem to overcome them.  Everyone has a bad day mentally and some cultures do not believe in therapy.  Mine included.  I"m glad you got some help in that department because it does make a big difference.  Lots of love and hugs to you. 

  • jboyce
    jboyce,

    Thanks for sharing your story. I agree with what rtrigo said. I need to stop feeling sorry for myself and be more like you. I am sure that they will get things working right - you are in the worlds best hospitals with the best care. Take care and thank you again.

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