Hey! Statistics Say That Your Time Is Up.

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.

Dear “Worried Reader”

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

BR

Composed using WordPress for BlackBerry.

17 Comments Add yours

  1. Some very, very wise wisdom in that epistle. Whoever the person with cardiac Scd is, find the peace and enjoy each day to the limits, a car could do for you tonight…

    dave

    Like

  2. With havin so much content and articles do you ever run
    into any problems of plagorism or copyright infringement?
    My website has a lot of exclusive content I’ve either authored myself or outsourced but it looks
    like a lot of it is popping it up all over the internet without
    my agreement. Do you know any methods to help stop content from being
    ripped off? I’d truly appreciate it.

    Like

    1. Basil Rene says:

      Honestly, my blog is so small, and the content so “specialized” that really and truly I never ran into that problem. Sorry.

      Like

  3. rolandclarke says:

    Although my condition is different – Multiple sclerosis – there is so much positive and uplifting in your words. As you say ‘a living sentence’. I am learning to live despite my MonSter, focusing on the positives I have and not letting the negative drag me down. All the best ~ light & blessings.

    Liked by 1 person

  4. Basil Rene says:

    It’s not easy in the beginning to be positive when you have a chronic illness, but I learned long ago that being positive and looking at every “negative” as a challenge to turn to positive, life gets a whole lot easier.

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  5. We cannot always worry about when we’ll die. Prepare, but not worry, because if we worry too much, that’s when we start to lose the will to live.

    Like

  6. Barbara says:

    I have MS and retinaitis pigmentosa which made my blind. I found out a few days ago that I have 4 swollen lymph nodes in my lungs and that my EF is 45 but I have no glogged arteries. After talking to my family it turns out 3 of my realitivess also have sarcoidosis. I am going to have a lung biopsy and echogardigram this week. Is there anything I should be asking the doctors? I’m an expert with MS and RP but this is new to me.

    Thank you.

    Like

    1. Basil Rene says:

      Hi Barbara. So sorry to hear of all this stuff happening to you. It sounds like your doctors are heading in the right direction for a pulmonary sarcoidosis diagnosis. How are they doing the lung biopsy? Is it a broncoscopy or open lung biopsy. The later I will warn you is an extremely painful recovery, so if they are going that route directly ask why not a broncoscopy first. In my case, I am resistant to anesthesia and the broncoscopy did not work as I tried to pull out the tubes and they had to stop. If you have more questions I would be very happy to answer. Just use the “contact me” page for more private conversation if you prefer. All the best. BR

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  7. laura says:

    your response to this other fighter of Sarcoidosis, well so uplifting and gave me some more fight. Thank you, and I’m so glad I came across your blog!! I can’t wait to read and follow more

    Like

  8. Edward says:

    I just found this blog today. I had a pacemaker implanted at 17 and was diagnosed with congestive heart failure at 23. There hasn’t been a definitive reason as to why it happened, it’s presumed by a virus. I turn 27 this year and I’m going in to get a heart biopsy to check for one possible reason, but my cardiologist has said if it shows up negative then at some point I’m looking at a heart transplant. It’s absolutely crushed me, and I’ve been trying to do everything in my power to keep myself as healthy as possible, because I just don’t think I could live with all of the upkeep that is necessary, it’s tough now with the meds and dietary restrictions.

    I don’t have sarcoidosis, but it’s comforting to find someone else who’s been afflicted with heart failure at a young age, and to see that you’ve been able to avoid needing a transplant of any kind. It always seems like looking up medical info and talking to people in certain communities always paints a grim picture with a definitive timer on how long you have left to live. It just eats away at you.

    So thank you for this blog, for sharing your experiences, and for having such the uplifting attitude that you do, because it gives me and others in similar situations hope and a drive to keep living life to the fullest.

    Liked by 1 person

    1. Basil Rene says:

      Thank you for your very kind comments Edward. If my posts can help one person, I have done my job. I am so sorry about you condition. I know that it is shock when you first find out, and I sincerely hope that the biopsy does reveal the cause of your heart failure. I also hope that you don’t need a transplant, but you are still a very young man, and I personally know a young man that had one at the age of 19, and he is now 37 living a very healthy and productive life. If that is the road that the universe has set you on, then I hope you embrace it with positivity. I know the prospect of having to take rejection pills for the rest of your life is daunting, but think of it – with heart failure you have to take pills for the rest of your life anyway. My heart failure has improved, but I still have to take those 13 pills a day. Still high maintenance. 😉

      Please keep me updated on your condition and feel free to write anytime if you have a question or just need to vent. My email basilrene@gmail.com, or you can just go through the contact me page on the blog.

      All the best

      BR

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    2. Rox says:

      Hi BR, I came across your blog a while ago and cried and felt their is hope! I was diagnosed with card sarcoidosis today. I knew I had the sarcoidosis for a few months but through my skin. With the MRI I did last week they found the spots in my heart causing a slow heart beat. I’ve been on prednisone for 7 months and today’s heart rate was perfect. In not enjoying the side effects of prednisone but it’s helping. I feel uncertain today since my rheumatologist is not certain which direction would be best for treatment. She has no other patient like me with the cardio sacridsos. Reading your blog has been an inspiration and hope. I have Faith that I will be able to maintain and live long for my 7 year old twins. Thank you for putting awareness!

      Liked by 1 person

      1. Basil Rene says:

        Hi Rox. Sorry to hear about your Dx. One thing I would suggest is that you try to find a cardiologist that is familiar with sarcoidosis and has treated it before. Cardiac sarcoidosis is a very serious disease, and you really should have some one knowledgeable in it treat you. If you ever have any questions, please feel free to drop me a note. You can reach me through the contact page in the menu above. ⬆️
        Best of luck and wishing you health and happiness

        Like

  9. Terri says:

    Thank you so much for the excellent response. I’ve been obsessing about my dx of PH. An internet search about longevity with PH made me crazy upset. I stopped planning things since I was going to be dead. I was very depressed. I was already depressed and anxious and this made my life unbearable. I liked what you wrote about how you are a person with an illness, and you are not your illness. I am usually pretty upbeat for a clinically depressed person. LOL. I feel hopeful again and am going to make each day the best I can. Terri

    Liked by 1 person

    1. Basil Rene says:

      Hi Terri. It’s not easy I know, but who know how long we have anyway. Enjoy the journey. Worry about the arrival time when you get there.

      Like

  10. Susan Laginess says:

    My husband was diagnosed with cardiac sarcoidosis a couple of months ago after going into VTach. He had a defibrillator put in a week later. Within the first couple of weeks he was zapped 9 times. 5 times in one day. After they implanted the defib they put him on Methotrexate. After his last hospital stay for being zapped 5 times in one day they put him on high doses of Prednisone. The side effects have been horrible. They are no wennig him off the Prednisone and he is scheduled for a special Pet Scan for sarcoidosis. They also tried a Cardiac Ablation but they could not doing anything because his heart rate would go down. This has changed our lives. I looking for suggestions how I can get him out doing the things we used to do. He will not go anywhere that is not close to the hospital. Any suggestions?

    Liked by 1 person

    1. Basil Rene says:

      Hi. What a terrible experience for your husband. I understand why he would not want to be away from a hospital. When I had my first ICD implanted I was afraid to do anything that I thought would set it off. It took me a few months to get over that. My ICDs never went off, and I understand that experience is not a nice one when it does go off once. For him to have it go off multiple times must have been extremely traumatic. All I can say is try to be patient and understanding. Life has changed and you need to try to change with it. Things may never be the same as before and it is harder sometimes for the spouses. However, realize that he is going through hell physically and the best you can do is be patient, supportive, loving and understanding.

      Like

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