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Should I get an ICD for Cardiac Sarcoid?

luv2fysh
2 Recommendations

Hi- I have sarcoids on my heart and my doctor is telling me I should get an ICD. I just came across this site looking for more information on living with an ICD. While this is a wonderful place to share information, it's quite all quite alarming for someone facing the need for an ICD for the first time.

A little history: I am a 45-year-old female that has had skin sarcoids for almost a decade. None on my lungs. I've had heart palpitations for a couple years now (PVCs, I think they are called), and have just had MRI and PET scan to see if they might be caused by a sarcoid. Evidence of sarcoid found. Oh no!

Of course I'd prefer to avoid a cardiac event, but am still reluctant to expose myself to the potential risks of an implant and to commit to a lifetime of maintaining/replacing such an expensive gadget. It seems so extreme for me to get an ICD!

Anyone have advice?

Explore topics in this discussion:

Exercise Sudden cardiac arrest Cardiac sarcoidosis Diflucan Cardiomyopathy Anxiety Pain Prednisone Sarcoidosis Methotrexate Stress

27 replies

ilisten2009

Hi Luv,

Sorry it's been a while for me too. I got an upper respiratory infection a few days before the scheduled implant, so now I'm on board for this Wed, June 17. In the meantime, the Dr who cured my skin sarc has sent me some supplements he says will help raise my EF and help me to exercise and feel better. He said it should take about a month for me to start feeling better and my Cardiologist will be doing another echo in two. This Dr also wants me to consider the Marshall Protocol, as well as find a good traditional cardiac sarc dr. I hope that the MP isn't a dirty word on this site. He's had success with it for other diseases but no one has used it under his care for sarc. I am definitely considering it because I trust him so much but I'm also going about this one step at a time. First get through the ICD, then the supplements and take major steps to change my living/work situation, which I believe is causing all of this garbage, then research sarc treatments.

I'm so glad you keep giving updates and that it seems like the adjustment to the ICD was much easier than you anticipated. Some of my anxiety comes from the fact that I am not as well versed as the rest of you as to what my heart is doing. I don't know when I'm having VCRs or VT or whatever you all say so easily. I finally understand the reason that I need the ICD is not because there's a 5-10% chance of a cardiac 'event', but it's that the type of event I will have, if I do, is most often fatal. Now that I understand that, I'm totally psyched to get this thing in me and let it save me if necessary.

It's so encouraging hearing you talk about the exercise you get. I can't even walk through a mall now but I am anxious to get to the gym and build up some muscle, and take off the rest of this excess weight. I will try to not be so afraid to go. My Drs have assured me that I just have to take it slow and listen to my body, so that's what I will do.

So glad to hear you're doing well with the pred so far. It terrifies me too but I know I have to consider it.

Take care and please keep writing.

luv2fysh

Good news! The sarcoid inflammation on my heart is gone! (...for now at least). Started the prednisone taper last week. Woohoo!

luv2fysh

Hello ilisten-

Please forgive the slow reply. I've just returned from a two-week vacation in Utah. The good news is that we did a TON of hiking and I didn't keel over. I love surviving vacations!

While I have had many doubts that I need this ICD, I have to admit that it has given me much comfort once I adjusted to the fact that I have a gadget wired to my heart. I used to lay awake at night feeling PVCs every 6 or so beats....one two three four five six SEVEN one two three four five SIX one two three four five six SEVEN....like counting sheep except while worrying that your heart will stop. These days, I feel the PVCs and know I'm covered.

I have a wonderful sarc cardiologist that recommended the electrophysiologist I hired (hired?). He too, is terrific, and works at a teaching hospital. I checked him out pretty well and learned that he's done the procedure jillions of times. What I didn't know at the time (and still am quite upset about) is that in the teaching hospital, a STUDENT performs the procedure with the pros overseeing. I didn't find this out until after the procedure, or I surely would have found someone else to do it.

So then, if some doogie-howser-wanna-be can wire me up without killing me, I'd say your chances are pretty good for surviving too.

As for the sarc, I've been on 60mg/day Prednisone and 20mg/week Methotrexate for two months now. I go in for my second set of scans this week to see whether or not it's working. As I understood it, the PET scan shows the active inflammation and the CT scan shows scar tissue...something like that.

Do please let us know how it went. I'll be thinking of you on Wednesday. Good luck!

ilisten2009

Dear Luv

Today is May 18 and I am exactly where you were when you first posted here. I too, have only had sarcoid lesions on my face which I treated with 2 weeks of Diflucan and continue to treat with 30 mg of melatonin every night. I sleep great!

Now the sarc is in my heart, confirmed with pet scan and echoes. My EF is 30% and I am finally convinced that although I don't believe I will have an arrest since most of my arrythmias are stress related, I will not take the chance that I am wrong.

I have mine scheduled for June 3rd, and I am curious about how you vetted your electrocardiophysiologist. Mine is board certified but someone said I should find out how many he's done, regardless of the diagnosis. Did you or anyone else do that?

I am also very resistant to pred and once I recover I will pursue treating the sarc, or at least get a good monitoring schedule going. It's frustrating that my Drs have not been able to tell me how much of what they see on the pet scan is scar tissue and how much is inflammation, only that there is both. I wonder if I need to pursue more experienced cardiac sarc specialists.

I really appreciate your bravery and posting along with your experience. I'm a little less scared now. I too will post again as things progress. Please keep us updated as to how you are doing with the ICD and the Sarc.

crochet

Luv2fysh,
It is nice to know that you think about us. :)
My man started 60mg prednisone as soon as they made the dx of cardiac sarc (Sept 18, 08).
All we have seen since Sept is a steady decline in his heart function so they are trying to get him off that nasty stuff asap. They have suggested Methotrexate.
They have us doing the tests to get on the transplant list so they don't want to add new meds right now. We will know more in a few weeks.
I love that your husband is keeping a sense of humor...my man and I find alot of humor in all of this because it doesn't seem real...we joke alot. :)
Mainly, we have decided that we are going through a hard thing right now...and it will just be hard... and we will just get through it tegether.
Our oldest son(24) is in the Navy. He is an MC on the Lincoln. :) We are proud of him.

luv2fysh

Hi all! It’s been 3 weeks now since my ICD was put in and all is well. My fears that the thing may be defective are starting to fade; my fright about having a gadget controlling my life is subsiding. Already, the ICD is just a lump that my husband has affectionately dubbed my “third boob.” Very funny, big guy. I’m thinking about getting a nipple tattooed on it just to play along.

I’ve resisted buying the “Diamonds May Be Forever, But Joules Are For A Lifetime” t-shirt from CafePress, and also the “Battery Included” jacket. I chuckled loudly at the “$25,000 and all I got was this lousy defribrillator” t-shirt. I’ve seen the hospital bill. That t-shirt is WAY off.

Other than a cursory glance at my incision, I have had a welcome little break from the parade of doctors that were becoming regulars in my life. I have, however, had to start taking meds. Prednisone for 2 months (they say, they say, they say) until the Methotrexate starts taking effect. I’ve been taking them both for about a week, with perhaps my first sign of a side effect today: flushed cheeks. At least I think that’s a side effect. Maybe I’m just embarrassed about something. I’ve had some night sweats too, but am chalking that up to the new over-warm comforter. How long does it take for all the other horrific Prednisone side effects to jump in? Haven’t found much on Methotrexate horror stories….yet.

In two months, I get another PET scan to see how things are coming along. Will be hopeful, hopeful…

Trying not to get on Inspire too much because I have a tendency to self-obsess, but it’s comforting to check in from time to time. If for no other reason, than to check and see if TheGardner has been busy writing!

-----------
Persistant1, I had no driving restrictions except that they say it’s not legal for me to be a commercial truck driver anymore. Sad to see that door closed in my life.

Crochet, How is your husband? I think about his need for transplant often and hope the best for you both.

Mary1

Luv2fysh,
I'm proud of you! I know it was a hard decision. I'm glad you're doing so well!
Mary

Johnie

Welcome to "the club," Luv2fysh. Sounds like you're on a good path. We're all pulling for you.
Johnie

Persistant1

Hi luv2fysh,
Thanks for updating us on your ICD. It's great that you felt good enough to go back to work after only 3 days! My doctor told me if they do an ICD for me I won't be able to drive for 2 weeks, are you able to drive?
Congrats on doing so well!

luv2fysh

So it's done.

Had my new ICD implanted last week. The pre-surgical stuff was terribly frightening, all the signing and sampling, and not much reassurance that I was doing the right thing. The procedure went fine, post-opp was slow but ended up in a private room with a view and lots of family and flowers and a good nursing staff to take care of me. Hours later, the alarms on the heart monitor started going off at higher and higher frequencies until everyone in the room was staring at it wondering if...if...if.... Most of all me, with my increasing worries that I had allowed this THING to be wired to my heart. What was I thinking??!! Of course, my pulse and blood pressure were shooting up, with more and more back-to-back PVCs. V-Tach! Ack! Luckily, none lasted longer than 30 seconds, so no shocks. Whew. As soon as I got calmed back down, everything went back to normal (or as normal as things could be).

They say the device performed perfectly as it should, and that the increased PVCs were likely due to the irritation to the heart from the procedure. No worries...right?

Overnight in the hospital, back to work the third day, puttering in my gardens the 4th (light duty, of course). Pain is much less than I expected, and recovery has been quicker than expected. One other thing that I hadn't expected is the fleeting feelings of panic. My imagination has gone wild with all of the "what ifs". Wondering how long it will take me to trust my little gadget.

luv2fysh

My son is 20. Looks like he will turn 21 in Afghanistan...what a terrible place to turn 21! I sure hope he makes it home safely.

Yea, about that arm-lifting thing...my doc said 6 weeks of not lifting it over shoulder level. How will I ever make it through without forgetting? My husband asked me how I will be able to dress myself. Alot of button-up tops, I guess.

Well, back to the garden. Trying to get my heavy lifting done now! Thanks so much for all of your support.

Johnie

Oh! How old is your boy? I couldn't stand it. Mine is 18 and I have forbidden military service and police work (so he chose the fire service!). Your stress level must be through the roof. I had just turned 47 when I got the ICD two years ago, and honestly it has not been a big deal. I have a pretty high tolerance for things, though, and I have a very good support system around me. It is a pain not to be able to lift your arms above your head for a few weeks, but otherwise no problem. I think you can handle it, Lady. If you decide to do it, go for it, get it done, put it behind you and start in on those prayers and care packages for your boy!!

luv2fysh

Good advice, Johnie. I called the nurse and she said my cardiologist has done hundreds of ICD procedures with very low complication rates, mostly with much older patients.

My ICD time is getting close and I've just learned my son, a Marine, is heading for Afghanistan. I'm a wreck! Like you...my traumas come in groups I guess.

Johnie

luv2fysh,

I'm glad to hear about your upcoming appointment to discuss treatment options. Yes, there sure is a time for "catching up" to the situation that has thrust itself upon you. Shock! You have sarcoid of the heart! Shock! You need an ICD. I hear you. My husband and I have had a few of those these past two years -- brain aneurysm (him), sarcoidosis (him), SCA (me), ICD (me), etc. So, yeah, take a little time to adjust to the "new normal." Do some research while you wait for that appointment. The Mayo Clinic site is always a trustworthy place. To me the ICD is kind of like insurance -- unfortunate you have to have it, too bad about having to pay for it, but wow -- if you "crash" you're sure glad it's there! And by the way, just like when you are pregnant -- everyone has an ICD story to tell you -- so listen to them all, but go with your doctor's advice (if you trust him/her). Personally, I forget I have one most of the time. Many days pass when I don't even think about it. Make sure your doc is highly experienced -- ask "How many have you done? How many of those had complications?"
Johnie

luv2fysh

Thanks for your honesty, stillhere (you're not broken!). I expect it did hurt at first, but hope that you are leading a relatively normal life now! Does it bother you to have the ICD now?

Johnie-thanks for your concerns and comments. This news is all so sudden! I just had skin sarcoids before, which were easily treated with cortisone shots, and had a good potential of just going away...I guess I'm just trying to adapt to this new news of heart involvment at a pace that I can accept. I do have an appointment in a couple weeks to discuss a treatment plan.

I'm thinking so selfishly these past weeks! I really need to focus on the others in my life and heed the advice of those that know rather than try to cling to my "normal" life. Reading about others with sarcoidosis on this site is really putting things into perspective, that's for sure!

brokenbutstillhere

I would say yes but i had a sudden cardiac arrest and the only treatment is an icd. I will warn you now it hurts a lot for the first week. I am also 19 though and its a personal thing for me

Johnie

luv2fysh,
Sorry to butt in here -- but I'm worried about you NOT being on steroids. My husband had sarcoidosis of the lungs and liver, was on steroids for several months and it completely cleared. I also had to be on steroids (very high dose) after my SCA for a few months because they didn't know what had caused my event (and subsequent many events). So they threw everything at me. Turned out I probably didn't need any of it, and the side effects of steroids are nasty -- but they do go away once you stop taking the medication. My understanding is that heart sarcoid is very serious and I thought steroids were standard treatment. What are you doing for treatment instead? Worried about you.
Johnie

luv2fysh

Persistant1, no...thankfully no other sarcoid except those on my skin. Do you have a rheumatologist for sarcoidosis? Sorry, this is all so new to me. While I could understand how sarcoid on the lung could cause pain, I'm seeing lots of comments about pains all over the body. What causes this pain? Is it a joint thing?

Crochet, trying to avoid prednisone for now. I will resist! My cardiologist said to think of my ICD like an airbag...hopefully one I'll never need. If I have this wonderful airbag, why take prednisone too? How is your husband doing on it?

crochet

Did the doctors put you on prednisone to combat the sarcoidosis?

Persistant1

You're probably right about the EP Study, no need to do it if the scans show sarcoid involvement.
I was very skeptical about needing an ICD since my scan was negative but my electrophysiologist said that the sarcoid is the only reason they have for my irregular heart beat, my rheumatologist also agrees with him.
It is reassuring to read all the posts on this board from people who have had a positive experience with all of this.

Did your pet or mri show the sarcoid in any other places ?

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