Why You Need to Know About Cardiac Sarcoidosis Screening
My physician’s index finger slid across the X-ray, briefly stopping in areas to indicate the foreign presence in my lungs. I had pulmonary sarcoidosis. And for the next 14 years, I would have regular examinations for my pulmonary health without ever knowing that my heart could be at risk, too.
I was first screened for cardiac sarcoidosis in 2016, after a possible aortic valve mass was discovered during an exercise stress echocardiography. But upon further examination, no evidence of it was found.
I moved on, not realizing that my heart should remain on my radar as part of my sarcoidosis care. I was alerted to this need by comments from readers of my column.
The clusters of inflammatory cells I stared at on those radiology images many years ago occur in the lungs of about 90% of us who have this disease. My mind was too busy galloping though the “what ifs” to worry about the granulomas being anywhere else.
What if they don’t go away? What if they spread? What if they cause extensive damage? You get the idea.
Because we head off to pulmonologists focused on preserving our breaths, the possibility of cardiac involvement may never come up. That’s why this February, I’m revisiting the topic again as part of American Heart Month.
It’s hard to pinpoint just how prevalent cardiac sarcoidosis is. In a column last year, I mentioned a study that estimates that anywhere from 3.7% to 54.9% of those with systemic sarcoidosis are affected.
What is clear, however, is that it is life-threatening and often not found until after people die. Nearly two-thirds of deaths related to cardiac sarcoidosis were caused by undiagnosed granulomas in the heart, according to the study “Sudden death in cardiac sarcoidosis: an analysis of nationwide clinical and cause-of-death registries,” published in the European Heart Journal in 2019.
One reason the condition, which is on the rise, has been going undiagnosed is because of the lack of clear guidelines for doing so. New guidelines recently established in Japan are yielding better results.
I believe another cause is lack of awareness. To change that, it’s important that we share our knowledge and experience, and provide a road map for others to reduce their risk of going undetected.
One of the challenges with having a rare disease is finding physicians who are familiar with treating it. Sometimes, much like our medical teams, we have no idea that there is a threat we are missing.
This month, please help me spread the word about this one.
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Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.
- A winning ticket: The cheapest ticket to Super Bowl LV, featuring the Tampa Bay Buccaneers and the Kansas City Chiefs, was nearly $10,000 as of last week, according to The Kansas City Star. But to honor those on the frontline of the pandemic, 7,500 vaccinated healthcare workers will get a free seat to the 22,000-person capacity game on Feb. 7.
- Chatty pets: Have you ever wondered what your pets are trying to tell you? If so, there’s technology to help. A new dog collar from Petpuls can analyze barks to determine if your dog is happy, relaxed, anxious, angry, or sad, CBS 2 Chicago reported. It retails for $99. If it’s meows you want to decipher, the app MeowTalk can help you better understand your feline.
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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Comments
stephen fiege
Always get a PET and spect scan with this disease. A PET is very hard to get most of the time. Insurance will not pay for this scan due to its cost.They do these scans for mostly cancer only. Sarcoidosis isn't really covered under there guidelines to pay for it so doctors won't do them.Keep pushing most doctors will tell you it is a lung disease mostly. They are wrong. 70 plus percent of us have it in our hearts and it just hides there till it messes with your heart and kills you. Do a whole body scan also to check for blockage in your arteries. When your heart is effected blood will not flow right and can cause a stroke or worst sudden death due to blockage. The 2 combined can kill you suddenly. That is why I had a Icd put in. It might save me once or twice till my heart just won't work at all from lack of current getting to it. Then you need a heart transplant and most likely lung also. That is what I did to find it. The hospital took a hit on the PET scan for the cost but I was right and it was there. Everything changed after that with doctors for me now. None of this fixes me it just buys time. You always are chasing time to keep ahead of this disease.
Rae Knox
When you said the hospital took a hit are you saying you didn’t have to lay for it?
stephen fiege
Correct. The way my insurance is set up if a doctor orders a test and does the test then bills it the insurance. If the insurance then refuses which they did under there codes I am not responsible for the amount. They can appeal which they most likely did since it came back positive. If it had come back negative they would have no grounds to appeal.Either way I did not have to pay for it. My doctor at the time was leaving his position and I think he just did it on his own cuss he believed in me after I had done all the tests they had come up with and found nothing. I still can't get another one.
Joyce Darlene Kidd
On April 2/20 my 39 year old son C.J. Died in his sleep. He was physically fit, had a great job, married with two children. He had yearly physicals. His autopsy showed Lesions on his liver, spleen and heart. His official cause of death was sarcoidosis with cardiac involvement. I had never even heard of this rare disease. The sudden death of my wonderful son has left the family forever changed. I sighed up for your news letter to try and understand more about sarcoidosis. It’s has helped explain alit to me.
Athena Merritt
Thank you for sharing C.J.’s story. I feel how special he was from your words and I pray for your family. You may have signed up to gain understanding, but please know your words are also helping to spread crucial awareness to others. I can’t thank you enough for that. I’m glad you found our site.
stephen fiege
Hi Joyce, I am sorry for your loss. You say your son had 2 children. Please have them checked a lot.Dr Culver at the Cleveland clinic is a good person too see.It is very hard to catch this disease even on a pet. It will come off patchy in areas for inflammation and doctors will write it off as false positive. This disease ran in my family. I had it from birth and had sores show up first on my skin at 8 years old.They just tell you it will go away most likely.Most doctors don't know what to do with us. There has never been a proven case of it going away.It may back off so you can go on living with a time bomb in you growing. You can't cure it but you can try to keep ahead of it.I have taken organs out to survive this disease when no doctors thought it would help.It helped a lot.I am 61 years old now and the last 13 years have been hell. But I am still here and get around. If it wasn't for my sweet wife of 36 years standing by me I don't know where I would be now.Good luck and again sorry for your son.
Leigh K
I live in Australia and it is hard enough to find a GP and a specialist who has any understanding of this insidious disease. I can’t even get a straight answer of any of my questions let alone further testing to find if the sarcoid has spread. The pulmonary specialists I see here just keep telling me that it will go away on it’s own and that the likelihood of it spreading is very, very slim. They brush of my concerns with my increasing breathlessness, the purple tinge I have in my fingernails and lips at times, and the unforgiving pain in my muscles and joints.
Athena Merritt
Leigh, it’s so frustrating and troubling when doctors brush off concerns. Don’t give up! Keep searching for a medical team that is knowledgable and helps. When I was in your position, I scoured sarcoidosis forums and also reached out to researchers for recommendations. The World Association for Sarcoidosis and Other Granulomatous Disorders has a list of patient societies on there site. Here’s the link: https://bit.ly/378hNyt Hope it helps. Hang in there! Wishing you the best!!
Denise T.
My first presentation was unspecified uveitis and 6 years laterafter unexplained shortness of breath, misdiagnosis of an upper respiratory infection, a negative cardiac MRI, and placement of a pacemaker; a PET revealed I had cardiac sarcoidosis. I'm fortunate I'm in a healthcare system that provides for a PET routinely for monitoring.
Keep pushing and reminding people that the majority of cardiac cases are developed during autopsy.
Athena Merritt
Denise, I appreciate you sharing this! I’m glad they caught it, and hope others learn from your experience. Thank you so much for helping to spread awareness!!
Rae Knox
I was finally diagnosed with sarcoidosis of the lungsin 2016 after no one would take my breathing problems seriously. I finally went to a great pulmonologist who diagnosed me with it. We got it under control but scarring had already occurred and can’t be reversed. I was better not 100% but better. Then in
Spring of 2019 it reared its ugly head and has been downhill since. My pulmonologist put me into a double blinded pharmaceutical study of a new sarcoidosis drug. They ordered a PET scan and I am so thankful they did. because most insurances only approve them for cancer. They found a granular nodule in my lower left ventricle. My pulmonologist later ordered a cardiac MRI and the radiologist could not see anything. Had they not had the PET scan to refer to they would have missed it! When he had it to compare he could then barely see it in the MRI. Fortunately it is asymptotic. My cardiologist ended up putting in a heart monitor loop which was much better than the defibrillator she thought she was going to have to do. Unfortunately I am the end stage of sarcoidosis and now have pulmonary fibrosis. On oxygen 24/7 and have been referred for double lung transplant. Neurologists and rheumatologist have not been able to determine why I have neuropathy and muscle weakness. Sarcoidosis sucks air! Pun intended. Have to laugh! When I get better it is my goal to find out how I can make insurance companies aware of the importance of using PET scans for Sarcoidosis. My doctor tried 3 appeals which were all denied. I did the 4th one which was me talking with the insurance moderating and an outside doctor listening and asking questions. I was asking for a full body PET scan because of neuropathy and muscle weakness but they approved chest only. But I am at least thankful for that.
stephen fiege
My small fiber was caused by a virus that caused a rare form of Gb that wrecked my whole system. I begged for IVIG or plasma exchange. They just wouldn't believe me and try due to insurance. So here I sit wrecked for life. The other thing that has caused problems with me are from high porphyrin levels in my blood from sarc inflammation which causes your mylon to be stripped from your nerves given enough time. That is why I wanted IVIG forever. It will reduce the porphyin levels in my blood which will slow the damage to the nerves so maybe the nerves can recover over time.Which I don't have any more now. But it is very expensive for insurance so it is hard to get approved.I have had this for a very long time and I don't know what is worse the disease or the insurance companies.
Athena Merritt
Thank you so much to taking the time to share this. You’ve given us a lot of useful information to have conversations with our medical teams about cardiac risk. Stay safe, and keep us posted. Wishing you all the best on the journey ahead.
LeeAnne Armstrong
After a long 5 years that started off with sinus snd double ear infections that I had never had before. I had spent years trying to get Anyone to take me seriously that I had never once been ill or sick in my entire life. 9 years perfect attendance in high school and all... then I move into a recently renovated very old farmhouse. After 6 months of deep cleaning, the dust and humidity nearly killed me. I moved out after going into anaphylactic shock coming inside my house from smoking. The ED tells me I have granulomas disease in my lungs; I've been exposed to a toxic substance/chemical. To get my allergies checked as well as my house. I did. Hypersensitive to both dust and mold. House had intense dust and tested positive for multiple molds in an air quality test. I moved out for 2 months, then back in just in time for my kids to go back to school. (This is dads house). I moved out for good, and have spent the last 4 years getting nonstop findings at several specialists, NONE of which were ever taken serious. Mold in my blood at high levels, sinus 'disease', thyroid disease, inflammation disease, 'possible'esophageal esophagitis (seriously the prognosis after endoscopy) that has been snarkly read to me as if I wrote it or made it up. (Idk how an actual diagnosis would be made if nothing by the specialists) endocrinology says my goiter and nodules have nothing to do with ANY thyroid concerns bc of bloodwork being normal, all of this done bc I struggle swallowing... it's only getting worse, however, like every other symptom I once thought was unbearable... I've adjusted to the pain and discomfort, mostly bc what else can I do. Everyone either dismisses me or insinuates I'm crazy ... now the Rheumatologist tells me it looks like it could be sarcoidosis. Mind you I've been struggling... I did a pulmonary function test, perfect score, ct shows multiple lesions; they were initially going to see me back in May... I just don't understand how this isn't enough to initiate SOME kind of treatment... I'm afraid it's in my lymph nodes, skin, eyes, brain and likely my heart... and quite frankly, I'm scared. I can't help but feel like if my dad or husband were with me, they'd have done SOMETHING. End rant. Thanks for letting me vent!