Cardio Sarcoidosis

Toxicity

by piglet22 - 2024-07-27 05:22:18

Hello 

Interesting to hear about the rhododendron problem and its potential effect on blood pressure and rhythm.

Were you aware of this or was it purely a chance event?

It seems that honey from the flowers is one route for ingestion of the active component.

Fortunately, I live in a predominantly chalk area, so rhododendrons and azaleas are rare naturally and it's unlikely to turn up at local markets.

Thanks for posting and hope you keep well.

Diagnosed with Cardiac Sarcoid (by a cardiac PET scan)

by PaceCahr - 2024-07-27 13:59:01

Hiya, 

My journey started with a change in my EKG spotted by an anesthesiaologist. Further testing showed that I had a Right Bundle Branch Block, and needed to make an appointment with a (new) cardiologist. A day later, I ended up in the ER after an episode of VTACH that required intervention - followed by a 12 day stay while they tried to determine the cause of the VTACH. 

For (reasons) I couldn't have an MRI, so they went the usual - looking for blocked arteries or things they could stent/ablate. Mine were clean and free-flowing, so after a cardiac PET scan specialically to look for Sarcoid, they found what matched evidence of granulomas, and  recommended a AICD, and further treatment for Sarcoidosis. 

Since Sarcoid is typically found in other organs, or multiple organs and not just the electrical pathway in the center of heart, I have multiple scans and tests on the horizon to find evidence of it elsewhere. It's easier to biopsy and verify from places like lymph nodes and the results are more accurate. 

I'm working with a Cardiac Sarcoid Pulmonologist on treating it.  The usual go-to (methotrexate) is not approriate for me, so we're trying a different immunosuppressent medication, and hoping I can tolerate it.  The goal is treat the sarcoid, and the doc is hopeful that with longterm  treatment, the granulomas will be able to be cleared by the body, and improving the electrical signalling path, and I will be less susceptable to the VTs.  

The AICD will stick around, because it's not just a pacer, it's a defib as well, and that's what it took to stop my first attack.  

Had 8 week device check earlier this week, and so far, the device has observed a half-dozen very short-lived VTs events, that resolved on their own quickly. I'm also on SotoLOL and happily, that doesn't keep my heart rate so slow that I need to be paced very oftern. 

Welcome to the autoimmune issue life - it's not fun.  I hope you find a immunologist who understands the food/gut link to health. I had a stressed caused health crisis in the 2000s that manefested itself as looking like RA or lupus, and it ended up being leaky gut + food sensitivities. At my worst, I could not use my thumbs at all, I had no opposable thumbs. While they do still have very visible osteo damage, my thumbs today are just fine, once the underlying gut issues was addressed.  

inflammation is dangerous. I wish you the best of luck!  

Replying to Pace Char

by Lamp - 2024-07-27 16:42:31

Thank you for your really comprehensive reply.  There is a lot in there I don't yet understand. What is a VTACH?

I also have a RBBB. Diagnosed in 2011. Do you know whether there are any established connections between the two conditions?

Also, do you know whether a defibrillator pacemaker is preferential? I have one that resynchronises my bottom chambers but doesn't have a defibrillator. I get concerned about Heart Failure. I do not know how to identify the symptoms of this and I live alone. 

re: questions

by PaceCahr - 2024-07-31 03:20:18

Hi Lamp, 

VTACH is ventricular tachycardia.  The other thing you'll hear a lot is AFIB - atrial fibrillation.  

Both cases - one side of the heart is just going waaaaay too fast, and things aren't working. 

I was told my vtach was up to 220bmp, and it wasn't stopping on it's own, so I was set up to be defibrillated in the ER after an IV medication failed to stop it. I got a defibrillator with a pacemaker attached, not really the other way around. This is because - I went into a sustained VTACH that required the shock to stop it. They do make "just defibrillators" that have no pacing leads - but once a Sarcoid PET scan found visual evidence of sarcoid, that coupled with the RBBB made a two-lead pacemaker with defib the go-to device. The pacemaker part is there to help stand in the gap when the anti-arrythmic medicine causes a slow heart beat - the AICD can just pace me back to 60.

I think the RBBB was just the first noticed sign of the (inflammation) impinged signalling path that showed up in my EKG. It was diagnosed at an office visit with my PCP on a Thursday morning. It wasn't seen as a an emergency, but as a "you need to see a cardiologist."  But Friday night was when my VTACH brought me to hospital a day and half later. 

Part of my history was I was seeing a cardiologist in the previous couple of years - for what was deemed to be "just benign PVCs."  They would keep me up some nights when they got bad, so I was using a tiny amount of metoprolol as needed for bad PVC nights - it mostly worked.  The couple weeks before my event, I was pretty much using it most night, but I was also under a lot stress. Were they related to my VTACH? Probably not, and they continued all through my hospital stay (got to watch them on the monitor and see how many and often they really happened) and I'm sure they're continuing now at home with the device.  Last device check showed hundreds of them in the last month. 

As to your concern about living alone and heart failure: is your pacemaker a device that has remote monitoring?  

A read-only device that lives in your home that communicated with the implant, and can upload data to the monitoring company?  That might lends a sense of peace that you can also push a button to have the monitor send reading up - and your Dr. would be notified if there was something of concern.  

Hope this helps!