I received an email from a reader who was just diagnosed with cardiac sarcoidosis. He said he was having a hard time dealing with the diagnosis and he read a statistic that patients with cardiac sarcoidosis have a life span of five years, and he wanted to know how much time my doctors had given me to live. Here is my open reply to him.
Thank you for your email and for your kind words of encouragement about my blog. I am sorry that you have developed sarcoidosis, and that the diagnosis is causing such an upheaval in your life. A diagnosis of any chronic disease is life changing, but I think more so when no one can explain how we get it, or that it is incurable. The good thing is that it is controllable.
You said you read the statistic that cardiac sarcoidosis patients only live for five years. I have never come across that, but I have heard of the statistic that cardiac sarcoidosis is responsible for 77% of sarcoidosis related deaths, and patients with cardiac sarcoidosis have a 50% change of surviving 5 years, and a less than 40% chance of surviving 10 years.
I also have pulmonary hypertension and there is a statistic for the survival rate of people with secondary pulmonary hypertension which is that the average life span is 13.5 years but when coupled with heart failure, the average life span is 5 years. Add pulmonary sarcoidosis and a PFO closure that leaks and I guess statistically I either have a day to live or I should have died day before yesterday.
Statistics are just an average of all a whole bunch of people. Although the average person lived 5 years or what ever, remember that there were some who lived a day, and others that lived fifty years. The average speed on a highway is 55MPH, but some are going 35 and some 85.
My point is, we don’t have expiration dates stamped on our forehead. No one can tell you when your time is up. If you believe with all your heart (no pun intended) that you will survive this thing, you will. The mind and the spirit are powerful things. If you believe you only have five years, then you will probably die on 1824th day after your diagnosis.
Right after I had my ICD implant, my heart failure specialist told me that I would have to have a heart transplant. Two years ago my sarcoidosis specialist told me I will have to have a heart and lung transplant. I always say I am going out with all the parts I came in with (well, minus a bone in my little toe, but that’s another story). I have always maintained a positive attitude that I was going to get better, despite being told that heart failure from cardiac sarcoidosis is irreversible, and I can only remain stable or go down, but never improve. My ejection fraction in the beginning was 20-25%. 18 months later it was 30-35%. Last month it was 45%! It’s getting better and everybody is totally dumbfounded. I constantly baffle every doctor because I refuse to live by a statistic.
Being diagnosed with cardiac sarcoidosis should not be looked at as a death sentence, but as a living sentence. It has given me the power to live in the moment and appreciate the now for what it is. I’ll worry about the future when it gets here, and the past is so over, no changing that, so no regrets. Look at every “mistake” as a life lesson. If life hands you lemons, add some stevia and make lemonade (Avoid sugar. Not good for sarcoidosis, but more on that in a future post). I don’t know how long I have, and although I hope it’s a long time, it may end tomorrow. Statistically I have a bigger chance of being killed in my car by some jackass that is texting while driving or some drunk loser. You are a person with sarcoidosis in your life. Don’t become a person where sarcoidosis is your life. Yes I do have days that I feel like crap, but I don’t think “Whoa is me. Why me?”. I say to myself “So sarc, you are feeling a little antsy today? That’s okay, I’ll just take it easy today and let my body take back the majority of the control. Probably take a nap or read a book until you calm down”.
Sometimes, the more you push against something the harder it will push back. What we have is incurable, and although I have read quite a bit about all the conditions that I have, I am not going to find a cure. So I read about what makes it worse and what calms it. Sometimes the best way to defeat your enemy is not by fighting him, but by trying to understand him.
A final bit of advice. There are a lot of web sites out there that have misinformation or no information. Don’t look too hard. In the words of the talented Sarah Brightman, “Not every boat you come across is one that you have to take. Sometimes, just standing still is the best move you’ll ever make.”
And with that I wish you health, happiness and peace. I hope that your condition improves and that should any new conditions show themselves, that you are able to find the strength to face the journey, and peacefully accept the outcome of the events in your life.
My very best to you
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