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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

crochet

It is hard to imagine what we would have decided if we knew my husband had cardiac sarcoidosis before his heart stopped on July 19, 2008.

Looking back on it I would say that it is a miracle that he survived.

Think about your loved ones.
And all of the "what ifs".
As with medication choices, to chose an ICD is a hard thing to decide.

It is good that you have the time to weigh your options and talk to your loved ones.

I'll be praying that God will give you the ability to decern all the information you are getting and do His will.

Mary1

After I was lucky enough to survive my first SCA, and had an ICD implanted without it being a choice, I was asked to talk to a woman in my area about making the decision to have an ICD. Her circumstances were very different from mine, and from yours. She asked me what I felt the pros and cons were. My response: "Cons: a little bit of discomfort once in awhile (which I've even gotten over since then), and regular check-ups. Pros: LIVE "
She researched more information, but ultimately had the ICD implanted. She has not regretted it for a moment.
I do not envy you having to make such a huge decision, but honestly, in my mind, it's "no contest."

luv2fysh

Thanks for your replies, Crochet and Mary. I did go ahead and make my appointment today. Thought it would be good to have "a date" while I think about things to help me to adjust to the fact that it's likely going to happen.

Crochet, thanks for helping me not to think so selfishly. Mary, you are so right about the no-contest thing!

Mary1

Good Luck! Let us know how things go!!

MARYCORINNE

Luv2fysh.... Hi there, I am a 45yr old lady with a EF of 30-35%. I was diagnosed 11/2007 with dialated cardiomyopathy and an EF at that time of 14%. I made the decision to have my ICD implanted after reviewing the odd's of survival with my cardiologist. The numbers without the ICD are very scary and very final. So I "went for it" June 2008. I really don't even notice the device much now and it has never fired !! Thank GOD ! But it is there just in case and that's the point. I still have the same concerns about future maintence and expense, but what is my life (and yours) worth? So there is my $128,000.00(icd cost) opinion. I wish you well and welcome you to the site, there are some amazing people here. :)
Warm wishes, Mary

Persistant1

Hi Luv2fysh,

I also have been recently told to get an ICD for cardiac sarcoid, scheduled for April 14. When are you supposed to get yours? Are they doing an EP study first?

I'm a 42 year old female who was diagnosed with sarcoid last Oct. and started having palpitations in November. After having an echo, stress test, 21 day holter monitor and a cardiac MRI. All the tests came back ok except the holter monitor which showed many PVC's and palpitations that would last for 2- 45 minutes.

I'm interested to hear how you are doing.

Persistant1

luv2fysh

Thanks for the reply, MaryCorrine. Really glad to hear your ICD has not gone off. The scary part of all of this is that I'll get a defective widget or defective leads. Bad enough I have a little heart trouble without ending up sick or damaged from the treatment of symptoms!

Persistant1, I'm scheduled for mid March. My electrocardiologist said that the MRI and PET scan were evidence enough without doing EP studies. Not sure why that would be...maybe I have more evidence of involvement? maybe cuz I have a longer history of PVCs? or maybe my cardiologist is an overeager nut that just wants to cut me open! ACK!

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 ?

crochet

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

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?

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

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

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!

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

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

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

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.

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.

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!

Johnie

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

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