My Story
- by Duke Heart Patient
- 2014-09-08 09:09:36
- General Posting
- 933 views
- 4 comments
I have posted this before but since I just turned the big 40 I wanted to post again for encouragement to you all ! :)
The Shock of My Life
Being born with a heart defect was just a blessing from God. At 2 months old I underwent transposition of the great vessels (Open Heart Surgery - Transposition of the great vessels (TGV) is a group of congenital heart defects(CHDs) involving an abnormal spatial arrangement of any of the great vessels: superior and/or inferior venae cavae(SVC, IVC), pulmonary artery, pulmonary veins, and aorta. CHDs involving only the primary arteries (pulmonary artery and aorta) belong to a sub-group called transposition of the great arteries (TGA) at Duke Hospital. Growing up having to watch my own self was what I did. Taking medicines everyday was the normal routine for me. Visits to Duke twice a year, test, studies and treatments all my life. Things changed again on December 10, 2011, a day I will never forget.
That Wednesday before my episode, my wifeâs father passed away at the young age of 62. That week before my experience I had taken off work to be with Jaime back and forth all day to visit her dad at the hospital. Her dad passed away December 7, 2011. It was very sudden and much unexpected. We were all in shock to say the least. The funeral planning and visits were long and depressing. That Saturday morning I woke up like I normally do, got ready to go off to referee basketball at the local HS gym for some good Saturday recreational games. I could tell I was just tired, give out and drained from the whole week before. I arrived at the gym ready to go. The first two games were fine. I felt pretty good after getting out on the court and jogging around. The third game seemed to be fine. After that game I knew something wasnât right. I just felt hot, tired and like I really wanted to just throw up. My good friend Chris that I had been calling with also knew something wasnât right. I remember him asking me if I felt ok because I didnât look good. I walked outside to get some air, sat on an old milk crate. It was probably around 40 degrees outside. As I sat there, Jaime walked up to me to see if I was ok. I told her I was just hot and thirsty. Jaxson came out and sat with me. Just a
very few minutes later my good friend Justin came out to check on me. He sat down beside me, felt for a pulse in my wrist and couldnât find one. He walked me inside into the medical room at the HS. I lay out on the table; still no pulse could be felt. He called 911 and the rescue came by and hooked me up to the heart machine. I was in A-Fib (Atrial fibrillation (AF or A-fib) is the most common cardiac arrhythmia (irregular heart beat). It may cause no symptoms, but it is often associated with palpitations,fainting, chest pain, or congestive heart failure. However, in some people atrial fibrillation is caused by otherwiseidiopathic or benign conditions.) They rolled me out on a stretcher and loaded me in the ambulance. Jaime told them not to take me to the local hospital to take me to Duke. They called Wake Med to let them know I was on the way there. As I was in the ambulance, the medic asked me several questions. I laid there very calm and alert explaining my history at Duke and all my heart issues I have dealt with in the past. They must have tried about 20 IVâs on me and could not get one started. My arms were torn up, I looked like a druggie. I gave the medic all my medical information, medicines I was taking and all my contact information. He was surprised I was calm and knew it all. I believe that the 2 guys in the back of that ambulance with me that day were scared to death I would pass out and die on them. After about a 45 minute ride to Wake Med I was greeted by about 3 doctors and 5 nurses who rushed me back into a room. It wasnât one of those visits where they rip your clothes off and start running around. It was very calm and coordinated. I undressed, out a gown on and laid there watching my heart rate running 236-240 for almost an hour now. The nurses came in, talked to me and began IVâs. After about 30 minutes, still no IVâs could be started. My heart still racing. The doctor had me try a few techniques to see if that would help and nothing. Finally, an IV was started. The doctor asked for some medicine through the IV that would stop my heart for about 7-10 seconds. Three times this was tried and not once did it work. Yes, it stopped my heart and I could feel it and it did feel like what he said, a mule kicking me in the chest. After those attempts didnât work, the next step was to shock my heart back into a normal rhythm. I remember the doctor telling me this may hurt a little. Remember I was awake and alert at this time, on no pain meds, just laying there waiting and then boom, I was
hit with the shock. This wasnât the paddles like you see on TV, I was already hooked up to the machine in case I did pass out and they needed to use them before they were ready. That shock threw me up about 3 feet into the air, half way off the bed. I was caught my 3 nurses. It was a quick flash; a bright orange light hit my body from head to toe. I felt it all over. I balled up like a baby. Without a doubt, that by far is the worst pain I have ever felt. The doctor asked me how I felt. âI feel like slapping youâ I told him, that hurt bad. He told the nurses next time to remember to put the side rails up and maybe strap me down. After that shock my heart rate dropped from 236-240 bpm to 60-64 bpm and it had worked. My heart went back into its normal slow rhythm. I stayed at Wake Med about 8 hours before being transferred over to Duke around midnight. While I was at Wake Med I remember a young girl from Clayton that was in a terrible car wreck just 2 rooms down from me dying. The doctors and nurses were doing their best to save this life. Unforntanlatly she didnât make it. I remember hearing screams and cries. It was some of the worst sounds I have ever heard.
About midnight Wake Med loaded me up to take me over to Durham at Duke Hospital. Jaime and Mom followed the ambulance over. I remember sitting up in the back of the ambulance looking out the back window at them following us. The medic in the back of the truck was a female. She talked to me to help me get my mind off everything that I had been going through that day. She offered to let me use her cell to call Jaime behind us so I did. I just wanted to tell her that I loved her and tell Momma the same. I remember the medic telling me that there was another patient up in the front part of the ambulance with another medic who was going to Duke to be treated with a brain tumor. My situation didnât sound so bad then. Once we arrived at Duke, I was rolled up to the 7th floor. I was admitted right across the nurseâs station. Looking out my window I could see Duke Chapel right across the way all lit up and colorful. That was a pretty site. I went through the normal admission procedure, checked vitals, changed clothes and settled into my room. 7120 was my room number. That night, going into the Sunday morning I didnât sleep much at all. I was hooked up to all these machines, beeping and buzzing. Around 5:30am the lab nurses came in and got blood work from me. Once I
finally did get some rest it was time for the day shift to come in and I just couldnât rest. The heart machine I was on allowed me to freely walk around the floor and get out of my room with the staff still being able to locate me and monitor my heart rate. I didnât leave my room that day, I was scared and at least being in my room and across the nurseâs station I knew I was close by if I needed them. Mom and Jaime spent the night with me. Mom never left my side till that following Friday and I had my pacemaker implanted. Jaime got up that Sunday morning and went home to check on the kids who stayed with my dad at our house. They wanted to see me. That Sunday afternoon while lying in the bed watching TV all of the sudden this alarm went blaring off so loud, doctors and nurses went running. Just 2 rooms down from me someone had died. There heart stopped beating. They brought this persons heart back to life. They had saved him. That patient was then sent around the corner to the intensive care heart unit. That scared me. The sounds and panic going on and not knowing really upset me. I was not expecting that to happen. The nurse told me that is what the staff is there for. Needless to say, that Sunday was not fun for me. I cried and cried and was scared to leave the room.
That Sunday afternoon Dr. Kanter, the pacemaker doctor stopped by to visit with me. He and my regular heart doctor had already talked about what I needed, a pacemaker. He came in, sat with me and explained what he thought was best. A single lead pacemaker to help regulate my heart rhythm. Before we did that he wanted to have some test done. I was scheduled for a heartablation. (The ablation of atrial fibrillation is an invasive technique that is used in the treatment of Atrial fibrillation(AF in the UK or Afib in the US), one of the most commoncardiac arrhythmias. Ablation is the removal or melting away of an unwanted structure or tissue. Ablation of atrial fibrillation can be accomplished with different techniques; the most established approach is via radiofrequency ablation around the pulmonary veins, which are the veins that bring oxygenated blood from the lungs back to the upper chambers or atria, in the left side of the heart.) Sunday night was sleepless and led into Monday morning. Waking up again at 5:30 for blood work. Dr. Armstrong came to see me that morning and tell me I was going to be ok. She and I have known each other my whole life. She recommended
me to speak with a therapist also to help me relax. The therapist came in later that Monday and spoke to me. We did a few relaxing techniques that really worked. He stayed with me for about 3 hours that day, talking and relaxing. That Monday afternoon I went down for my procedure. I was explained what was going to happen to me and the test they would do. I was rolled into the surgery room. They hooked the shock pads up to me and again I felt the fear. I was scared they would use them again or what if I just didnât wake up. They gave me medicines that put me to sleep. I remember waking up being rolled back into my room. Jaime, Momma and my sister were with me. They all explained to me the procedure was a failure. Once I was put to sleep and they began my heart jumped back up to 240 bpm and they stopped. They gave me medicines to slow my rate back down. I went back to my room where I had to lay flat on my back for 4-6 hours to recover. Everyone was there waiting to see me. That night it was just me and mom. I cried myself to sleep, I didnât want to die. I was 37 years old, married with 2 young kids. What had I done to deserve this ? Why me ?
While at Duke my nights where long and sleepless. My night nurse Rebecca was totally amazing. She and I talked a lot. She was 1 year younger than I was. A single mom with 2 kids. She herself had also had some heart issues and was on medicines for that. She would do all her work and routines and then come see me around 3-4 am and we would talk for about an hour or two. She really helped me relax at night without taking sleeping medicines. My other night nurse was Angel. She was a huge Carolina fan and we got along great. The nights were just very long, scary and depressing.
Tuesday came and again, blood work and rest. I asked about taking a shower and being unhooked from the machines I was on. Quickly I jumped in and took a shower. That was the first shower in 4 days. I had washed off but nothing like I needed. The doctors did the rounds and started me on some new meds to see if that would work in place of getting a pacemaker. They wanted me to try them and see so I did for 2 days. Tuesday night was restless again. Wednesday was rest, TV, bed and just relaxing. Thursday I went back down for another ablation. It didnât work, the same response and the medicines without a pacemaker wouldnât work either so I was scheduled for a pacemaker implant on Friday December 16, 2011 at 2:00 pm.
Friday morning came. Momma still by my side. She hadnât been outside or left me at all. I woke up Friday morning ready to get that pacemaker. The doctors had stopped by that morning to tell me again what would happen. I couldnât eat all day , I was starving. Around 1-1:30 pm they came to get me , rolled me down again, hooked me up to the shock pads once more. They gave me something to relax me and help me rest and sleep ⦠about 2 hours or so I was back in my room , awake and recovering. The surgery was a success and I had a new pacemaker implanted. I laid around that afternoon and finally Friday night my mom went home. She said she knew I was ok. Jaime stayed with me that Friday night and left me that Saturday morning around 9. For the first time I was alone. I was once again scared. Alone in my room with my new pacemaker. I went out to the hallway and walked around. The nurse had stopped me to let me know that 18 laps around the floor was a mile so I began to walk and walk. During the week my Church brought me a get well package. In that package was a book of daily devotions. I had already read most of them before. I walked the floor and noticed that there was a new patient about my age. He looked scared. I went to my room, got that book and wrote in it a little message and went back to his room and gave him that book. I told him that whatever he was feeling was normal and that God was in control. That Saturday night my long time friend Anthony came to stay with me. We stayed up talking about the good ole times. That Sunday morning came , Anthony left and the doctors came and said the news I was going home. I began to cry. I didnât want to leave. I was happy right there in that room with the fear gone that if something happened to me again they were there to save me. I knew when I left I was on my own. I sat down at the bedside table and wrote a letter to all the staff to thank them for all there hard work and dedication for saving my life. I cried and cried. Jaime arrived around 1:00 pm to take me home. I was packed and just waiting to go. They rolled me down in a wheelchair to the front of the hospital. As soon as I sat in the car I busted out crying. Jaime thought I was having a meltdown and I was. I didnât want to leave. I was so happy to be alive but scared at the same time. This was the first time I had been outside in 8 days. I met an old black man, 3 rooms down from me who we became good friends with. Mr. Thompson was his name. He was in need of a heart transplant. He
loved to talk and he and I would walk around the floor together. When my kids would come to visit me they would stop to see him first. He loved to see the kids and they would make him smile. I got his phone number and call him every once in a while and we chat about our lives and how we are doing. I guess being shocked was a wake up call for me. Things could be worse, I could be like Mr. Thompson and need a whole new heart. I found some comfort online in the pacemaker club support group. There many people who live with devices just express there concerns and ask for help and comfort. I met another good friend there Paul Jones who I personally have never spoken to on the phone but we text and email every day and give support. We both fear the unknown and living day to day. Itâs a challenge not knowing what may happen if we do to much and over do it. My faith in God has helped me a lot along the way. My support from friends and family has been outstanding. February 4, 2012 I raised over $4000.00 to have donated to the American Heart Association in my name. The local community wanted me to keep the money to help pay bills but there are people who need help worse than I do, like Mr. Thompson who needs a heart. My heart may never function properly and may have backwards plumbing but thanks to God and Duke and everyone else who has helped me along the way I am a blessed and humble man.
I have dealt with the everyday livings of marriage, kids, works, and finances and so on and even though they do worry me and stress me out sometimes, I wouldnât trade it for anything in the world, not even a new heart. My whole life I have gone to Church and prayed for others that they donât have to live like I do or go through what I have. I thank God for allowing this to happen to me so that I can be a good example for him and help others. I do have good days and bad days and even days I want to just tear this pacemaker out but without Christ I have nothing. He has me here for a reason. If not when I was born he could have taken me away then. I have beat all odds and lived a good life so far and I hope there is plenty more.
Back in 2008 I had surgery on my left ear to have a (Cholesteatoma is a destructive and expanding growth consisting of keratinizing squamous epithelium in the middle ear
and/or mastoid process.) removed from my inner ear. That surgery was very painful. It left my left ear canal about twice the size as my right one. I can hear a little better out of it but the whole is a lot bigger and sometimes I catch people looking at it. It doesnât bother me like it use to, itâs just a scar of salvation and a reminder that Jesus loves me. I can say that my 8 days at Duke was an expierence that I will never forget.
Today I still live with fear. Fear of dying, leaving my family behind. The fear of failure. Am I a good son, husband, parent, sibling or person. The fear of my pacemaker quitting on me while I sleep. The fear of nighttime. Things that I have to work on for myself and I know I will get past them. Some of the stresses that use to bother me like overlooking all the baseball umpires donât bother me anymore. I have grown to have an attitude of âI donât careâ anymore. Things that use to worry me donât worry me as bad. I deleted all my social media and that has been a huge stress relief. Money will always be a concern. Bills will always come in. I will always owe Duke do to the visits twice a year now. But I am thankful they are so close to me and have been able to save me. I am thankful that my parents do love me and are still alive. I am thankful for my sister and brother, my in-laws, nieces and nephews. I am thankful for Jaime, Madison and Jaxson. I donât know if I will ever âfullyâ recover from everything I went through in the past but I know who holds the future and he promises not to harm me and gives me hope.
To anyone who has been through what I have or will in the near future, donât give up. Stay strong, listen to the doctors, rest and relax and most important , have faith, you are here for a reason. I canât say your journey will be an easy ride but it will be a challenge, a testimony, a life changing event. You will see a side of yourself that you never knew you had. Embrace it and live it.
Thank You,
Michael
Pacing since December 16, 2011
4 Comments
Happy Birthday
by jimb - 2014-09-08 06:09:40
Thank you for sharing your story, I think one of the realities that I have had the hardest time dealing with is trusting my doctors and God to help me recover. Your story is inspiring and humbling.
Jim
wonderful story
by josjos - 2014-09-08 12:09:01
You are an amazing person. Thank you for sharing your story. I received a pacemaker in July. Fine one day and pm the next. You have gone through so much and yet have such positive attitude! You have inspired me. Thank-you. (ps...Happy 40th Birthday and many many more).
Good Luck
by Duke Heart Patient - 2014-10-21 04:10:58
Good luck everyone and you are welcome ! ! ! :)
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Member Quotes
I am just now 40 but have had these blackouts all my life. I am thrilled with the pacer and would do it all over again.
Thanks !
by Duke Heart Patient - 2014-09-08 04:09:10
Stay Strong ! ! !