cardiac sarc

[Guest guest]

Thanks for answering me. My doctor is at University of Michigan. He said

he has treated 12 people with neurosarcoidosis. He is trying chemotherapy

and he said if this does not work, there are other medications to try. I am

not sure what that will be. This is really scary. I have a 19 year old and

a 4 year old. I am 40 years old. You have really been through the ringer.

I hope you do well. They are going to wait until my second round of chemo

and then do another brain MRI and see if the areas have responded at all. I

have over twenty 5 mm areas on my brain. Let me know ho your doing. Lori

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[Guest guest]

!

It is so good to hear you are back home! We've all been thinking about you and keeping you in our prayers and hearts.

Take care, and do not overdo it!

Love to you,

Tracie

NS Co-ownermoderotr

[Guest guest]

Becky, I have a friend whose presenting symptom of sarc was an arrhythmia. She went to the E.R., where she went into cardiac arrest (she actually died,vat least once). She has a pacemaker & defibrillator.

When I first experienced my atrial fibrillation, back in 1994, it woke me up. It felt like my heart would race, then stop, repeatedly. I couldn't count my pulse, even in the carotid, because it was so fast & erratic. Being a nurse, of course I didn't want to go to the E.R., so I waited it out for a couple of hours (during which I got up to brush my teeth & change my underwear!). I kept wondering, "what if it stops & doesn't start up again?" I looked over at my husband, in a dead sleep, & thought how I'd never be able to wake him up in time and if I did, he wouldn't be able to do CPR in our water bed, and he probably wouldn't think to get me out onto the floor. You can tell that I have an overactive imagination! Finally, I woke him up to take me to the hospital. By that time I was getting a little short of breath. But I still had him stop just short of the E.R. ramp, so I could try counting my pulse once more. Nurses seem to have a horror of going to the E.R. unnecessarily. I still couldn't count it, so he took me on up there & I went in. I was still worrying that they would check me out & say, "Why are you taking up our time, when we have actual sick people to see?" Which I know they wouldn't say, but that's how my brain operates. Anyway, as soon as I told the receptionist that my heart was doing something funny, a crowd descended on me, got me hooked up to everything, and to my relief, told me there was actually something wrong with me! Whew! Sure don't want to be told you're fine.

My point is, even though the doctors, including a critical care specialist that I think the world of (he's kind of like House, only nice), assured me that the arrhythmia wasn't related to the sarc (confirmed by biopsy), they never could say what did cause it. At the time I was perfectly healthy; the only medication I was on was hormone replacement. It took a couple of hours to convert to a normal rhythm and I stayed in the hospital 2 days for testing. I had several more episodes, which gradually spaced out & resolved after a few months. I've never had the atrial fib again, although I do get occasional palpitations & I've had an unexplained tachycardia (fast heart rate) for about 4 years. As Becky said, cardiac sarc is quite common; I read that a high percentage of sarc patients have granulomas in the heart on autopsy, even though most of them never had symptoms. So, I still have concerns that it's there & may decide to jump up & party some day.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: potassiumDate: Sun, 5 Aug 2007 04:49:11 -0700 (PDT)

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[Guest guest]

Hi Rose,Even though it was not recognized I know my sarcoidosis began as cardiac in nature. I would wake up in the wee hours of the morning with skipped beats and tachycardia. I exactly what you mean about not wanting to go to the ER. I worked at a major hospital in NC and the last place I wanted to be was in the ER. I had 2 D & C's b/c it had to be a "woman" thing...ended up having massive lymphadenopathy in my chest seen via chest x-ray. Then had a chest CT that showed a liver granuloma and more masses in my lungs and chest (1994). Then had a mediastinoscopy with biopsy that definitively dx me with sarcoidosis. I've had all the tests. The 30 day heart monitor showed a-fib one morning around 4:30 plus other abnormal beats. This was as I was being decreased off my prednisone. Thank God I went to s Hopkins or I would have been in big trouble. I still get the fast heartrate once in a while but not like I did. With sarcoidosis, the granulomas/inflammation can really

mess with the heart's electrical conduction system. So the key thing is to keep the inflammation down and the granulomas quiet. If in doubt...check it out. Cardiac sarcoidosis is not something to mess with. Don't ever let any doctor dismiss your symptoms. You know what you feel. Chances are the doctor who is saying "all is ok" just doesn't understand or believe you. I'm glad to have the AICD although that was a bit of an ordeal too. Blessings,BeckyRose wrote: Becky, I have a friend whose presenting symptom of sarc was an arrhythmia. She went to the E.R., where she went into cardiac arrest (she actually died,vat least once). She has a pacemaker & defibrillator. When I first experienced my atrial fibrillation, back in 1994, it woke me up. It felt like my heart would race, then stop, repeatedly. I couldn't count my pulse, even in the carotid, because it was so fast & erratic. Being a nurse, of course I didn't want to go to the E.R., so I waited it out for a couple of hours (during which I got up to brush my teeth & change my underwear!). I kept wondering, "what if it stops & doesn't start up again?" I looked over at my husband, in a dead sleep, & thought how I'd never be able to wake him up in time and if I did, he wouldn't be able to do CPR in our water bed, and he probably wouldn't think to get me out onto the floor. You

can tell that I have an overactive imagination! Finally, I woke him up to take me to the hospital. By that time I was getting a little short of breath. But I still had him stop just short of the E.R. ramp, so I could try counting my pulse once more. Nurses seem to have a horror of going to the E.R. unnecessarily. I still couldn't count it, so he took me on up there & I went in. I was still worrying that they would check me out & say, "Why are you taking up our time, when we have actual sick people to see?" Which I know they wouldn't say, but that's how my brain operates. Anyway, as soon as I told the receptionist that my heart was doing something funny, a crowd descended on me, got me hooked up to everything, and to my relief, told me there was actually something wrong with me! Whew! Sure don't want to be told you're fine. My point is, even though the doctors, including a

critical care specialist that I think the world of (he's kind of like House, only nice), assured me that the arrhythmia wasn't related to the sarc (confirmed by biopsy), they never could say what did cause it. At the time I was perfectly healthy; the only medication I was on was hormone replacement. It took a couple of hours to convert to a normal rhythm and I stayed in the hospital 2 days for testing. I had several more episodes, which gradually spaced out & resolved after a few months. I've never had the atrial fib again, although I do get occasional palpitations & I've had an unexplained tachycardia (fast heart rate) for about 4 years. As Becky said, cardiac sarc is quite common; I read that a high percentage of sarc patients have granulomas in the heart on autopsy, even though most of them never had symptoms. So, I still have concerns that it's there & may decide to jump up & party some day.

Ramblin' Rose Moderator From: Mac Tosh <macandtosh626 (AT) yahoo (DOT) com>Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: potassiumDate: Sun, 5 Aug 2007 04:49:11 -0700 (PDT) Find a local pizza place, movie theater, and more….then map the best route!

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[Guest guest]

Kind of weird, both getting diagnosed in 1994. I wonder how many nurses were diagnosed with sarc in 1994. Maybe it's just the two of us.

Ramblin' Rose

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[Guest guest]

Rose Change your underwear? Of the 4 times I've had to have someone call 911 for me I was naked 3 of them! LOL grannylunatic@...

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[Guest guest]

,

You lived my nightmare!!! I have always worried I would be in a delicate

position if I ever had to go by ambulance to the hospital. I always

change my underwear before I go to bed because of the neurogenic bladder

and I want to have clean underwear on just in case.

Terri G.

>

> Rose

> Change your underwear? Of the 4 times I've had to have someone call

911 for me I was naked 3 of them! LOL

>

>

>

>

>

> grannylunatic@...

>

> ---------------------------------

> Choose the right car based on your needs. Check out Yahoo! Autos new

Car Finder tool.

>

[Guest guest]

If you've not gone to www.stopsarcoidosis.org--- do so!!!!

They have several brochures and one is on Sarcoidosis and the heart. It is excellant. I HIGHLY SUGGEST that each of us order several copies of each brochure- so that we can take them to the MD's with us.

Becky

I know that one of the mainstays-- is going to be prednisone for you. It is so important that they get the inflammation down and get you started on treatment for the pulmonary hypertension. Your poor heart is thinking you aren't getting enough oxygen, so it's pumping harder to keep your lungs working and the primary artery that goes to the lungs is being compromised. I know you know this-

Hang in there lady, and know you are in my prayers,

Tracie

NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Thanks so much Tracie. It has been a scary couple of weeks. Better feeling this morning. Only one heart flip and it didn't hurt as bad. Really concerned me when JH cardiology echo clinic tech couldn't find my tricuspid valve (she has been doing this stuff for 24 years). Will be glad to see the report. You and this group have helped me SO much. Your prayers are much appreciated.Blessings and Love,Beckytiodaat@... wrote: If you've not gone to www.stopsarcoidosis.org--- do so!!!! They have several brochures and one is on Sarcoidosis and the heart. It is excellant. I HIGHLY SUGGEST that each of us order several copies of each brochure- so that we can take them to the MD's with us. Becky I know that one of the mainstays-- is going to be prednisone for you. It is so important that they get the inflammation down and get you started on treatment for the pulmonary hypertension. Your poor heart is thinking you aren't getting enough oxygen, so it's pumping harder to keep your lungs working and the primary artery

that goes to the lungs is being compromised. I know you know this- Hang in there lady, and know you are in my prayers, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

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[Guest guest]

Tracie,Meant to say too that I ordered a couple of copies of the FSR cardiac brochures months ago and took them to my doctors. It was the best source of info about the heart and sarcoidosis that I had seen. Blessings,Beckytiodaat@... wrote: If you've not gone to www.stopsarcoidosis.org--- do so!!!! They have several brochures and one is on Sarcoidosis and the heart. It is excellant. I HIGHLY SUGGEST that each of us order several copies of each brochure- so that we can take them to the MD's with us. Becky I know that one of the mainstays-- is going to be prednisone for you. It is so important that they get the inflammation down and get you started on treatment for the pulmonary hypertension. Your poor heart is thinking you aren't getting enough oxygen, so it's pumping harder to keep your lungs working and the primary artery that goes to the lungs is being compromised. I know you know this-

Hang in there lady, and know you are in my prayers, Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage.

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