Why Was the Middle Aged Man’s Heart Beating so Dangerously Fast?

I was diagnosed with Sarcoidosis in 2007 and then with Cardiac Sarcoidosis in 2012 after a pacemaker and ultimately an ICD implant. I was only 30 years old! This story resonates so close! I hope this patient knows how lucky he is an lives each day with a giant smile on his face.

This man’s story including the death of his sibling is a mirror image of what my husband is currently going through with his cardiac sarcoidosis. In my husband’s case and I believe this man’s as well at the first sign of complete heart block the heart doctors should’ve been questioning what is causing this in patients that have no prior history and seem relatively healthy but they don’t. They put in that pacemaker and they think, “I fixed him “but they don’t bother to find out the cause… Until it’s almost too late and V tack almost kills them. My husband lost his brother to cardiac sarcoidosis, at the same time my husband was being diagnosed with it. we received the autopsy report that showed that CS was indeed what had killed him.

Hi I love the column and now I love the show but I don’t understand where the crowdsourcing happens. Where do people weigh in?

Dr Horn has been my cardiologist for many years. I would not still be alive without her. The diligence and tenacity described in this article comes as no surprise to me. She is nothing short of brilliant.

After the transplant patients only live 10 years? that is sad. I am glad the find a treatment for it and that he is now enjoying his kids.

I love this column and for the first time ever I knew right away exactly what was wrong with the guy! 3 years ago I too found myself in the ER at 2 am with a heart rate of 220 something. I too should be dead, especially since I drove myself there in full on VT & almost turned around to go home because I thought I might be over-reacting & had too much to do the next day. I was discharged from the hospital 11 days later w/ an angiogram, MRI, and an ablation under my belt, a brand new I.C.D. & pacemaker in my chest & no idea what was wrong with me. My "likely diagnosis" was myocarditis. Prior to this I had hardly been in a hospital. Never smoked, daily yoga. Not overweight. Lots of veggies. College athlete. So pretty healthy. Probably didn't drink enough water. And completely unprepared to enter the health care world. Things stabilized for about 2 years then last fall the spiral downward. I was in San Francisco when I hit what I hope is the bottom, got shocked a bunch which is no joke & thank God the paramedics said UCSF was where I needed to be. The cardiologist who saw me in the ER knew immediately I had sarcoidosis. I now have this amazing cardiology/rheumatology tag team @ UCSF that talks to each other! They listen to me! My treatment is working! I lucked out! Some of what I learned: If you don't feel right see the doc don't wait denial is not a good strategy don't feel silly ask lots of questions & keep good notes on symptoms. Get a second opinion! -

Has anyone addressed that this might be Wolf Parkinson White Syndrome?

I was diagnosed w cardiac sarc almost four years ago. It was almost too late. CS is rare and not dx in a clinical setting very often. I was already being treated for pulmonary sarc and was having additional symptoms but my pulmonologist didn’t make the connection, even scaling me down on prednisone as my lungs on xrays where clearing up. What I kept hearing from doctors is there is no protocol for treatment because sarc is rare. I asked: how did my pulmonologist not connect the dots. I believed at the time if u have pulmonary sarc u SHOULD be tested for cardiac sarc as 70% of cardiac sarc have pulmonary sarc. The risks are too great! If u don’t test for cardiac sarc, SCD is at risk, further damage to heart, and for me it is congestive heart failure and cardiomyopathy which has changed my life. This also costs people and health care thousands of dollars in additional health care costs. A Pulmonologist on the east coast, Dr. Nox, recently wrote an article stating this protocol. If you are dx with ANY sarc, you should have further heart exams such as ekg, echo and PET scan. No more discretion for doctors! This needs to happen to save lives and reduce effects from CS. By the way I had the same experiences as the father in your article.

As usual, a great learning experience from this good doc. Perhaps, I missed it. But how did this cardiologist know about sudden death of a sister of this patient. May be, I missed it. Still amazing that this patient was lucky to get a heart transplant so soon after this incident. God help him enjoy company of his children a little longer than a decade. Former VP Dick Cheney is doing well after almost half a decade and does not look likehe wants to quit.h

Awareness about cardiac sarcoidosis has been increasing rapidly over the past 10 years. It is not nearly as rare as originally reported from autopsy studies. Current and previous guidelines (which may not have been published at the time of initial presentation) recommend screening for cardiac sarcoidosis in young patients such as this one with unexplained heart block. Early diagnosis and treatment is critical to prevent downstream complications including life threatening ventricular arrhythmias and heart failure, some of which may be prevented by prompt immunosuppression. Certainly the later presentation with VT, then with HF raises the suspicion for cardiac sarcoid considerably. Recent advances in imaging (PET and cardiac MRI) have increased the ability to diagnose cardiac sarcoidosis even without the need for a heart biopsy to confirm the diagnosis. Bottom line: A young patient with unexplained heart block, ventricular arrhythmias, it heart failure NEEDS a workup for sarcoidosis.

What I cannot understand has to do with his sister's autopsy report and the actions his family (specifically, his mother) took. Receiving an autopsy report like his sisters should have necessitated a family discussion--all his sister's siblings should have seen the report (and ideally received a copy) so they could share it with their PCP since sarcoidosis is not a common disease. True, it doesn't usually afflict siblings, but my PCP has told me that she is interested in any sibling health issues as it could provide useful information in future diagnoses. (I'm an only child so this would not apply to me but all my cousins health histories and diseases are noted on my medical record)

Why didn't any of the other heart doctors think of this. This is what is so scary about medicine. If you can find the one doctor you live, if not....

It should have been noted that while Sarcoidosis is not rare Familial Sarcoid is very uncommon and familial sarcoid presents like non familial sarcoid does with pulmonary and lymph node involvement. So there was no clue to the sarcoidosis excepting the patient's sister's autopsy. Did the autopsy report tell of other subclinical granulomas in more typical locations such as the lungs? Finally, there are other familial granuloma diseases than Sarcoid. Blau Syndrome is one.

The patient had symptoms for 5 years and was under the care of a cardiologist in NJ. Some diagnosis must have been developed by this cardiologist, but Dr. Sanders doesn’t provide it. This cardiologist (and other physicians the patient presumably had seen) would at some point have taken a family history, since this may affect the patient’s prognosis. So, it is difficult to understand (without more details) why the family history of sudden death in a sib wouldn’t have been noted and treated as a “red flag” for a familial disorder. Beyond this, the patient would have been evaluated routinely for underlying primary arrhythmia, coronary artery or valvular disease, as well as for simple tests of myocardial function. So, it is hard to believe that no one had appreciated his heart was enlarged and poorly contracting, due to a primary cardiac muscle abnormality. That is, he had a cardiomyopathy. So, I wonder what question the NJ cardiologist was asking Dr. Horn? Stephen Rinsler, MD P.S. in reading about dilated cardiomyopathies, I noted that some patients have apparently benefitted from treatment with left ventricular assist devices. I wonder whether this was used with this patient prior to his heart transplant.

just one question - what is his diet and exercise programs like? no mention of either of these two very preventative elements in a healthy life - everyone wants doctors to take care of them rather than doing anything for themselves

The end choice of the patient spoke it all to me. I had been living/struggling with an autoimmune disorder called CFS/ME. The name in itself sounds ridiculous (chronic fatigue syndrome) that the patients experience ridicule from their doctors and the people in their lives who hear about it. I have been living blindly with it for 19 years before I received btw diagnosis then another 3 years to get accurate diagnosis and thanks to the current Doctor who chose to listen to the patients and learn about it rather then ridicule them, being himself gone through the experience. I must add that I had to become my own healer & investigator as I really wanted to be a healthy mother for my girls. I learnt from many coaches, authors, healers and spiritual workers including studying courses, to have some knowledge about the clues what our body is trying to communicate and the emotions are being suppressed. I love food and life choice patterns so, these became my entry doors to my inner world. About this patient, I am sensing that there were people in his ancestors who were forced to work away from home and they resented it a lot. The pattern of disease & the love of his family forced him to make the right decision in life. His disease helped him to make the decision he made, kind of finishes the circle. My future suggestion is to cook with your children, learn about food that supports the heart function and practice more listening to your family and yourself. Its okay to choose family!

Did anyone ask him how much water he drank? Dehydration causes thick blood, making it difficult for the heart to pump it through the body. Statins to thin blood is not the answer. Just drink more water...one ounce per one pound of body weight, i.e., divide your body weight by 32 ounces and that gives you the number of quarts to drink per day. Don't listen to doctors! They know nothing about good health.

I have just watched the "Diagnosis" series on Netflix. Absolutely brilliant. Had to watch every episode because it was so enthralling and interesting. Well done Lisa.

If a new heart becomes available, can this gentleman's life be extended another 10 years, and another 10 years ... ?

When I read an article like this, I tell myself that my aches and pains at 70 are nothing and I have no problems.

This story is so insane to me. It interests me that the guy lived with such a rare heart condition for so long without thinking anything was wrong. It also surprised me that he didn't think he had a heart attack at first. He could have been dead so many times because of how irregular his heart was. It is crazy that he passed out so many times because of sarcoidosis that he just prepared himself in advance to get medical attention. The fact that he ended up living and getting a heart transplant, which is such a miracle.

It is sad that he did not know the results of his sister’s autopsy after her sudden death at a young age, which might have set some alarm bells ringing in the family. However, what scared me the most in this article was the fact that his sister collapsed while bathing her two-year-old son- really every parent’s worse nightmare. I’m presuming the child was okay or it would have been a double tragedy.

Seems odd this man would not have been more curious about the cause of his sisters sudden death to begin with. Very likely would’ve made his condition diagnosed earlier and much more treatable.

I would bet that his CXR after all these years showed signs of sarcoidosis and his CHF with an ejection fraction of 10% needed to be more aggressively treated. We know he was headed for a heart transplant, but his medical therapy could have been better.

Presumably this man had really good health insurance and also a good retirement plan! How many people in this country have that?? I don't see any "malpractice" as stated below--just thorough treatment for someone who has access. The question should be why can't everyone have this? Universal health care folks--think about it.

When my seemingly healthy brother died suddenly at his job seven months ago-two hours after having a treadmill stress test- his wife was told an autopsy was no longer required in our state for natural deaths like his. His wife, in shock and alone, did not order one. This patient’s story underscores both the importance of autopsies and for close order relatives to know and share relevant medical histories. Our dad had to have a pacemaker after his heart stopped several times. I’ve got a bunch of autoimmune conditions. My mind can’t help but wonder. I always share these columns with family and friends. This gentleman’s experience is a good example of why I do.

The adage 'You can work to live or You can live to work' hits home with this story. Our 38 year old son died suddenly 2 years ago leaving 3 young daughters behind. His autopsy stated Cardio Myopathy. His heart was donated for study to Northwestern University and their research stated 'inconclusive'. How we wish he could have been given a heart transplant. This man has been given a second chance to cherish his children and his remaining days on earth.

I'm happy he made it and was "given" ten years - That was 6 years ago. Still, he is a relatively young man. What is it like to see half of your anticipated gift of years behind you? Or if he has done well, might his lifespan be much longer than the "average?" I wondered what the odds are that this expression of sarcoidosis is caught early on? And it's a lesson in how important it can be to know family health issues.

It is too bad that the person who did the sister's autopsy didn't highlight to the family that she died of a possible genetic disease, so that it could be noted in the medical histories of the other family members. If it had been in his history with the other cardiologists, they might have found it sooner.

Once again this column demonstrates that, for anything other than garden-variety medical problems, chance is the primary factor in getting a proper diagnosis and effective treatment. In this case, the patient had seen numerous cardiologists over the course of five years and had several invasive interventions, all without an accurate diagnosis (and apparently without any of the doctors considering his family history.) It wasn't until he lucked into care by Dr. Horn, "the best cardiologist in New York," when he was taken to the emergency room that he finally got a correct diagnosis. This led to the life-saving transplant that perhaps could have been avoided had he received an accurate diagnosis years earlier. We all better hope that Lady Luck is smiling on us in a medical crisis, delivering us into the timely care of a doctor with the needed experience and outlook, because it certainly isn't a given.

I have a practical question: is he a millionaire many time over? Else how can a 48 year old afford to retire and pay for the immune suppression drugs and medical care required for post transplant patient? Maybe his wife has a job with incredible insurance.....

If after the original episode the doctor had dug deeper and asked about his sister’s death, would treatment for this condition have been successful?

Live your life to the fullest!

This column is the best.

This man's decision reminds me of the line: No one ever died wishing they'd spent more time at the office. This patient made the right choice.