Feb 13
Sownman
Sownman , Posted on SUPPORT NETWORK Blog

Its The Heart Nightmare 02-13-17

 
On March 21 1984 I was 34 years old and while sitting at lunch I suffered a transient ischemia attack although I didn’t have the name for it till years later, I lost my peripheral vision, my memory of peoples names that I knew well also disappeared. It lasted about 40 minutes and I covered it up then returned to work. My assistant convinced me I should not ignore this and go to my doctor. He admitted me to hospital for testing. Well the testing indicated cardiomyopathy, one of the things he was hoping to rule out. The chief of cardiology visited me and told me my only hope for survival was a heart transplant. I asked how about if I keep taking these pills, stay off booze, and cigarettes and look me over again in 6 or 8 weeks. He said 6 to 8 weeks would probably be too late. My Dad came back from Washington DC and rescued me, taking me to his cardiologist who said yes your heart is lousy, but its not that dire.
 
I was warned that another night of heavy drinking would probably kill me and that cocaine certainly would. I began to readjust my life, doing things as best I could in a manner that I had ignored previously. I didn’t drink or use tobacco or recreational drugs. I lived as best I could BUT I could not get those words “six to eight weeks would be to late” to leave me. I lived for about a year as though I had a hand grenade in my chest with a pin barley in place ready to fall out. I was alive but not enjoying it at all. I met a man in an AA meeting who shared his story with me. He got me to see that God is running the show not me; I had zero control over life or death except to eliminate my addictions. The only choice I had was to go with Gods will and enjoy my moment-to-moment life. It started to work for me.
I started to enjoy life and people that feeling of impending doom disappeared.

Years started to pile up without trouble but in 2004 my new cardiologist began to see hints of further trouble. He implanted me with an AICD. The ICD recorded my every issue and reported it to Dr Mok. When Id come in for checkups I always asked “what does the little tattletale have to say” I started to get arrhythmia more and more often and the ICD was now delivering therapy to get my heart back in rhythm. I had the more fatal kind of Arrhythmia, VTAC. BY 2009 my battery was running out and a new ICD was implanted. My new friend, my tattletale, continued to do its job well but things were going downhill. In 2004 it was reporting 3 or 4 non-sustained attacks of VTAC a month. By 2013 it was up to 8-20 a month but they were all still minor non sustained arrhythmia that either went back to normal on their own, or with minor urging from the ICD.

On May 14 2015 everything changed, I awoke with a sharp jolt at 4AM. The VTAC had become sustained and the minor therapy didn’t work. My heart raced to 200bpm. At that speed it can no longer pump it just flutters. My ICD used its full force and shocked me back into rhythm. My wife asked what happened because it woke her. I said, without knowing for sure “It’s the heart nightmare”

When an ICD delivers a full shock it is similar to being hit in the chest with a baseball bat. I saw my cardiologist to see what I had felt, hoping it was just a muscle spasm but it wasn’t. He said it was full blown cardiac arrest. Without the ICD we would not be having this conversation. The shocks slowly grew in frequency. By October I had had maybe 8 more. They even came while I was asleep, doing nothing. By November there was an evening when I was shocked 7 times while laying on a gurney in ER in Tucson and the doctors refused to help me. I told them what was wrong and what to do but they let me suffer. My old cardiologist Dr Mok called friends at UCLA and got me in the door quickly because I was in such trouble. They did an ablation. It took 11.5 hours and they only got the inside of my heart done. I was told 50/50 chance of success but I got none, it was worse if anything. I got a second ablation lasting 10 hours on the outside of my heart 2 weeks later. They said they identified and stopped 6 different arrhythmias. I said well you got it then, the answer was no its still just 50/50. New ones can start and old ones can return.
 
I still got worse and now I was pretty depressed again as I’d had the best people at the best institution work on me. By now I was on 900mg a day of mexilitene
and 800mg a day of amioderone. These are fatal doses. Dr Mok told me I could only do these for a few days but by February had been on them for 5 months.
On Feb 8th UCLA suggested a ganglionectomy. The heart has two sets of nerves, primary and secondary. In this surgery they cut the secondary nerves up near the first rib. The theory is that the VTAC storms feed back to the heart through those secondary nerves and this would help me. It helped because afterwards my attacks came no more than one every 8 hours rather than 7 in three hours. But it didn’t help enough to be able to cut down on the medication so I was still being poisoned.
 
My life had now been saved because I died somewhere around 50-60 times.
With the ICD I was 100% protected from sudden cardiac death. The problem is every shock damages the heart and eventually it wont work anymore. I couldn’t cut down on the medication and my liver and kidneys and eyes were starting to go from the amioderone. During these periods of hospitalization I was kept on a lidocaine drip, as it was the last thing that stopped the arrhythmia. That was all well and good but Lidocaine is pyschotropic. It’s like LSD. It’s like living in a Salvador Dali painting. I would watch TV on a wall with no TV set. When I shut my eyes to try and sleep I didn’t get darkness, I just got a distorted view of the room. By now it became clear that my only hope was again a transplant, that one I’d been able to stall for 31 years. My wife was adamant that there would be no transplant. When the word was mentioned she formed her fingers into a cross like you might to scare away a vampire. We had a friend who was living on a total artificial heart and the concept terrified her. I said you look at them and see horror, and I see my only hope. I spoke to a group of the doctors at UCLA and said I only have a few weeks left, and if I die on the table I’m much better off than I am now. The VTAC was horrible, it was like living with a sword suspended over your head by a thread. You know for sure it’s going to break, you just don’t know when
 
I got on the list on May 16 and received a new 18-year-old heart on May 25 2016.
Things have been going wonderful for nearly 9 months now. I do anything I want, I play golf, and I walk as much as 3.5 miles at a time. I return to California once a month for checkups and make volunteer visits to other patients wafting for hearts.
I don’t worry about the future because it looks good, and I still have zero control over it.
 
Keep believing and keep fighting. If I had that transplant in 1984 I would almost surely have died before I was 39. In those days success was a 50/50 chance and even if successful 5 years was a very long time to live on a transplant. Now I'm retired and 66 years old. God and good doctors and me usually doing what I was told allowed me last for 31 more years of medical developement. I coulkdn't be more gratful for my gift.
God bless all the donors.

 
5 Comments
  • Lace
    Lace,
    God Blessing to you and family
  • NixNax
    NixNax,
    Man, what a ride. Remember, God's in charge. Peace to you and your family.
  • Raiz_Ali
    Raiz_Ali,
    This is so inspirational, so encouraging. Wish you many many happy decades of life ahead. Thanks for your story. It's wonderful to go through it.
  • AHA/ASA Sarah Ismail
    AHA/ASA Sarah Ismail,
    I'm so glad that you were able to get the help you needed just in time and that you kept working on your health and pushing forward! Wishing you all the best for the future ahead, Sarah
  • purple heart
    purple heart,
    I'm glad you did not give up! It is important never to give up because amazing recoveries happen every day! I had a cardiac arrest at age 34 and in the hospital for 3 months! I was on the heart transplant list and the bi-vad but was removed when my liver and kidneys failed. I too have cardiomyopathy ! Amazing my heart , liver and kidneys all came back! My heart is still enlarged however my enjection fraction is 40%-45%! I work hard everyday to stay positive and not to give up hope. I am on my 4th ICD. Just remember to take one day at a time and enjoy the little things in life! I am so happy you made it! Take care !
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