Five years ago today (It’s now 12 years) I went in to Mt. Sinai to have a hole in my heart repaired. When I woke up I was expecting that years of questions about my heart would be solved. My fatigue at doing task that required exertion would be a thing of the past. My dizziness when doing exercise would stop. Instead I awoke from anesthesia, groggy and crossed eyed, with the surgeon at the bottom of my bed telling me that the operation to close the defect went well, but they found a problem …..

After that I pretty much went blank. A problem? This operation was supposed to make my heart “normal”. I was supposed to be able to run a marathon after this. I looked at my wife who was next to my bed to see her reaction. Her face expressed how I felt. Confused.

When the doctor left I asked my wife what the doctor said. All she could say was that he said there was a problem with the function of the heart and that another doctor would be in to see me sometime that day.

I passed out again and when I woke back up it was after lunch. I still had no idea what was wrong, and my wife did not know either. So we waited and we did what we always do when we are face with some negative news, and that was to try to find the lighter side of life. We joked. We talked. We did not worry.

Later on that afternoon my brother came to visit me in the hospital. I told my family about the hole, but I never told anyone about the sarcoidosis. I did not want anyone to know because they would not understand it and would immediately assume it was cancer. My family has a terrible history of cancer deaths.

While my brother was in the room with us, in walked a doctor and a few interns. He was the heart failure specialist. He started to talk about what they found, and that was I had heart failure. I never heard those words before in that combination. He said all appearances indicate that the sarcoidosis was now active in the heart. I looked over at my brother and his face said it all. The confusion. The shock. So while the doctor was talking to me, my wife explained to him about sarcoidosis.

It was a lot for me to take in, and the doctor started to tell me about drugs I will need to take, probably for the rest of my life. After a while it was all blah blah blah. The doctor was explaining everything in extreme medical jargon, mostly for the benefit of the interns in his presence, so I stopped listening and just nodded after a while.

The doctor left and I looked at my wife and said “Never a dull moment eh? Here we go again” and we both laughed much to the confusion of my brother. As far as he was concerned, he just witnessed a doctor giving me what should be the worst news of my life, but here I was laughing it off.

And that’s the way I have always handled adversity. To joke about it.

The next morning, early, a third doctor appeared at my bed just as I woke up, with his assistant. He introduced himself and explained that my heart function was very low and that I had the possibility of having sudden death, and that he thought it imperative that I implant a defibrillator. A what? What the hell was he talking about? I came into the hospital 24 hours ago to get a defect fixed that was supposed to make everything better and now you’re telling me I could just die suddenly, no warning. And to avoid that I needed to implant a device in my chest to shock my ass back to life it that happened? Holy crap!

I called my wife as she was still at home and told her what I was just told. Her response was silence. I think we stopped finding the funny in it after that. It was three blows in 24 hours. But we eventually did find humor later that day. I was joking about walking around shocking people. I told the doctors that I needed to think about this defibrillator in my chest madness. I needed to research it, and to talk to other doctors about it.

I left the hospital and went home to recuperate. Rested as I was told to do, and went back to the surgeon the following week. He said the plug to close the heart should completely be closed in about six weeks after heart tissue grows over it but sometimes it could take up to a year. Mine never closed completely. It still leaks, and as of this writing, the idea of going back in and doing another fix is being tossed about.

When I was finished with the surgeon I met with the heart failure specialist and as he explained it, my heart function was 20% to 25%, which was very low and he advised to implant the defibrillator. He also said that heart failure from sarcoidosis was not reversible and that there was a 50% chance of living 5 years and a 20% chance of living 10 years, and that I would need a heart transplant in a few years. I looked him in the eye and said “I will get better and I will not need a transplant”. He looked at me with that “yeah right” look

So, today marks five years. I made it to this point. According to statistics I have a 20% chance of making it another five. But statistics also show that heart failure from sarcoidosis is irreversible. My heart function five years ago was 20-25%. Today it is 65%. So what ever I am doing seems to be working. Who says that you need to always take life seriously. Life is to be enjoyed.

I don’t know if I could drop down tomorrow or live to be 92, but all that matters is today. Statistics say a lot of nothing to me. I now just live for today and enjoy being with my wife, pups and kitty. When it comes down to it, that is all that really ever matters.

Originally Posted August 28th 2012

It’s now almost 13 years and My heart function as of my last test was 60%, so I am still going strong

Written by Basil Rene

I maintain two separate blogs. One is LifeAsAnAnomaly.com where I discuss my life with sarcoidosis and the other is AChefTalksFood.blog, where as the name implies, I talk about food.

4 comments

  1. Know you’re having a wonderful day. Need some of your energy and great advice. What’s your secret for getting back to 60%. Right now I’m doing 30% and was in the hospital very recently for CHF.and getting rid of the fluids. I’m usually not too freaked out by sarcoid related damage but this is scary. I love my life and have been a survivor now for over twenty years (heart, lungs, and skin). Positive thinking and eliminating stressful situations and people have really worked for me. I’ve been trying to find the solution to reversing my 30% but so far no luck. It’s been reducing now for about three years and I can’t seem to be able to stop it. Is there anything you can suggest?

    Best regards, Thanks much..

    On Sat, Jul 13, 2019 at 10:01 AM Life As An Anomaly wrote:

    > Basil Rene posted: “Five years ago today (It’s now 12 years) I went in to > Mt. Sinai to have a hole in my heart repaired. When I woke up I was > expecting that years of questions about my heart would be solved. My > fatigue at doing task that required exertion would be a thing of” >

    Liked by 1 person

    1. Hi Kathleen. That is a great question. the thing is, in my case there were a lot of factors already in place that lead to my EF% getting back to “normal”. Firstly, before all of this I was extremely active – hiking, biking etc., and when I wasn’t exercising, my job keeps me very active. I am on my feet all day. So going in, my heart was very strong. Secondly, my heart failure was discovered a month after I had a full cardiac work up. At that time, in July, I was told that my heart was as strong as an 18 year old. A month later, it was in failure, so that meant I caught it extremely quickly, so I don’t think that there was extensive damage from the sarcoidosis. I started meds immediately. I also live a very “clean” live, and always have. I never smoked or drink, and still do neither. never did recreational drugs or took any prescription drugs. I resisted any kind of medication. I think I may have taken probably four Tylenol by the time I was 42, and I have a lifetime of migraine and cluster headaches. I have an extremely high pain tolerance. Since developing Sarc, I started an anti inflammatory diet and still keep it up. I also do supplementation for my heart with herbal and homeopathic remedies. I also stopped eating sugar. Hope that helps somewhat.I hope you feel better soon. I know it’s not easy, but hang in there!

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