RE: Crud--cardiac sarc

[Guest guest]

Oh dear, Rose, I'm so sorry to hear your news I hope there are some good

treatment options for you (((Hugs))).

It's interesting what you say about having had tachycardia for years ... my

daughter has an 'unknown autoimmune disease' which they've been trying to dx for

over 6 years. She's had problems with tachycardia for years too, but all the

scans show her heart is normal, just fast (she hasn't had a heart MRI though).

My immunologist is seeing her as well, and is considering whether sarc might

explain her symptoms as well, especially since I have it. Next raft of tests

next week for her ...

Will try to catch up on chat in a few hours, if I'm at home (it's Saturday

morning for me).

xxoo

> Well, I got some results of my heart MRI this afternoon & it looks like I've

got cardiac sarc. I didn't get to talk to the doctor because he was in surgery

today. But the nurse said that I have heart involvement now , but that my heart

" didn't look too bad. " He wants to have a face-to-face meeting next week to go

over everything & discuss treatment options. He's also consulting my doc at the

Indiana Univ. sarc clinic for his input. I have a feeling that my back

surgery's going to the back burner for awhile. I know from research that up to

25% of sarc patients have some cardiac involvement, but that many have no

symptoms & it's just found on autopsy after death from another cause. I don't

think I'm one of those folks because I've had the arrhythmias & tachycardia for

so many years. I just hope there is a better treatment than Pred. Guess I'll

do a little more research. On the bright side, my PCP just gave me a new script

for Percocet, which helps the back & leg pain some. The first rx for 60 tabs

lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't

consider me a drug seeker (which I'm not). I'll have to find a really good

place to hide them, or Ginny will help herself. I considered asking for the

fentanyl patches again, but I had a dickens of a time keeping those suckers on.

Even with strips of tape or bandaids on the edges, they fell off before it was

time. So I think I'll do better with the pills, just taking them when needed.

Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.

Today is one of those days. I tidied up the kitchen & living room (hid stuff in

bags & boxes & put them in the garage), then vacuumed because we had a potential

adopter coming to look at the kittens. She's taking two!! Both of the girls!

Just 2 more to find homes for.

>

> Ramblin' Rose

> Co-owner/Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

>

>

[Guest guest]

Rose,So sorry to hear about the cardiac sarc. It is a bummer to find out the darn thing is spreading again. I have just sworn off more testing because I just don't want to hear about the chances of different kinds of involvement. They'll have to hospitalize me before I have any more.Hope all turns out to be minor treatment. The Imuran works really well for me.Good thing to keep the Percocet away from Ginny. You need it more than she does now.Take good care, girl.To: neurosarcoidosis Sent: Fri, May 13, 2011 5:15:50 PMSubject: Crud--cardiac sarc

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the

bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking

two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]



Rose Prayers are here and going out for you.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Crud--cardiac sarc

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Rose, I'm sorry to hear this, My Mom's Cardiologist told me the same thing that 25% of Sarc patients have it in the heart upon autopsy.  You should talk to Tracie too, that is why she had to stop the Remicade, and she's doing much better now?  When you cleaned the kitchen and living room, did that just wear you out like you ran a marathon?  When I clean I am so wore out, I have to sit for awhile, then your back, I'm glad the pain is better, and I hope they can still do more to help you.

But, happy you got two kitties adopted, yeah:)  Hang in there, your in my prayers girlfriend! love ya, Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc.  I didn't get to talk to the doctor because he was in surgery today.  But the nurse said that I have heart involvement now , but that my heart " didn't look too bad. "   He wants to have a face-to-face meeting next week to go over everything & discuss treatment options.  He's also consulting my doc at the Indiana Univ. sarc clinic for his input.  I have a feeling that my back surgery's going to the back burner for awhile.  I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause.  I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years.  I just hope there is a better treatment than Pred.  Guess I'll do a little more research.  On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some.  The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs!  Apparently they don't consider me a drug seeker (which I'm not).  I'll have to find a really good place to hide them, or Ginny will help herself.  I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on.  Even with strips of tape or bandaids on the edges, they fell off before it was time.  So I think I'll do better with the pills, just taking them when needed.  Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.  Today is one of those days.  I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens.  She's taking two!!  Both of the girls!  Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

[Guest guest]

Thanks, Jackie. What's weird is that for several months I've had these funny little sensations in my chest. I've pretty much ignored them; haven't told any doctors because I really can't describe them. They've become more frequent the last couple of months, so now I'm wondering if my imagination is playing games with me! I'll try to describe them in case any of you have had something similar. It's like a fluttery feeling in my chest & I have to hold my breath for a few seconds, then it will go away. When I had the echocardiogrm, several times the technician had me hold my breath, which I've never had to do before. I've had 3 or 4 echos since 1994, the last one at this same cardiology center. So now I'm wondering about those funny feelings. Of course, I can't remember if I had the feelings during the echo! Anyone have anything similar?Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc Rose Prayers are here and going out for you. Jackie Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............ Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Yeah, Marla, cleaning the two rooms visible from the front door wore me out! And I didn't really clean, just hid stuff. I did vacuum & get the worst cobwebs. It took me a couple of hours to do the little I did, resting every few minutes. I had to wear my back brace, and I did take a pain pill about an hour before the cleaning began. I can remember, in the olden days, I could clean my entire house in 3-4 hours. And not just hide stuff, but actually put everything away! The place was spic & span. Sadly, them days are long gone!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sat, 14 May 2011 10:46:50 -0600Subject: Re: Crud--cardiac sarc

Rose, I'm sorry to hear this, My Mom's Cardiologist told me the same thing that 25% of Sarc patients have it in the heart upon autopsy. You should talk to Tracie too, that is why she had to stop the Remicade, and she's doing much better now? When you cleaned the kitchen and living room, did that just wear you out like you ran a marathon? When I clean I am so wore out, I have to sit for awhile, then your back, I'm glad the pain is better, and I hope they can still do more to help you. But, happy you got two kitties adopted, yeah:) Hang in there, your in my prayers girlfriend! love ya, Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Rose: sorry to hear about this latest complication; hope things work out. in Ontario, Canada To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc Rose Prayers are here and going out for you. Jackie Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............ Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Thanks, . I've done some research, so that I can ask halfway intelligent questions. I'd like to tape the visit; I know from past experience that even if I take notes, I won't remember everything the doctor says (if I even hear it to start with). However, I gave my tape recorder to my nephew, as I hadn't used it for several years. I doubt it works now--he's 7, has Asperger's & loves to take things apart. I might see if I can get something cheap at WalMart.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: neurosarcoidosis From: wluce50@...Date: Mon, 16 May 2011 01:33:26 +0000Subject: RE: Crud--cardiac sarcRose: sorry to hear about this latest complication; hope things work out. in Ontario, Canada To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc Rose Prayers are here and going out for you. Jackie Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............ Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Rose, I had an Echo when before I could start Remicade, and was told it's normal.  I get tachycardia from time to time, but it's pretty short time wise, If I do too much is usually when I notice it. I tell you it doesn't take much anymore to break out in  a sweat and feel as though I've been doing weights for an hour, my husband pulled a muscle or something in his neck and it's been hurting, but he wanted our living area to be put back like it was preChristmas, he doesn't like change, surprised he went this long, anyway, my son and I moved the furniture around last night, and man that wore me out.  Just trying to walk farther then I should does me in.  but I don't think my heart is anything but reacting to doing too much and telling me to slow down.

Did you meet with the doctor yet?  as you can see I'm once again starting at the bottom of the emails and moving up!  Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Thanks, Jackie.  What's weird is that for several months I've had these funny little sensations in my chest.  I've pretty much ignored them; haven't told any doctors because I really can't describe them.  They've become more frequent the last couple of months, so now I'm wondering if my imagination is playing games with me!  I'll try to describe them in case any of you have had something similar.  It's like a fluttery feeling in my chest & I have to hold my breath for a few seconds, then it will go away.  When I had the echocardiogrm, several times the technician had me hold my breath, which I've never had to do before.  I've had 3 or 4 echos since 1994, the last one at this same cardiology center.  So now I'm wondering about those funny feelings.  Of course, I can't remember if I had the feelings during the echo!  Anyone have anything similar?

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500

Subject: Re: Crud--cardiac sarc



Rose Prayers are here and going out for you. 

Jackie

 

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Crud--cardiac sarc 

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc.  I didn't get to talk to the doctor because he was in surgery today.  But the nurse said that I have heart involvement now , but that my heart " didn't look too bad. "   He wants to have a face-to-face meeting next week to go over everything & discuss treatment options.  He's also consulting my doc at the Indiana Univ. sarc clinic for his input.  I have a feeling that my back surgery's going to the back burner for awhile.  I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause.  I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years.  I just hope there is a better treatment than Pred.  Guess I'll do a little more research.  On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some.  The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs!  Apparently they don't consider me a drug seeker (which I'm not).  I'll have to find a really good place to hide them, or Ginny will help herself.  I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on.  Even with strips of tape or bandaids on the edges, they fell off before it was time.  So I think I'll do better with the pills, just taking them when needed.  Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.  Today is one of those days.  I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens.  She's taking two!!  Both of the girls!  Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

[Guest guest]

Rose, I hear you, those are long gone for me too, my husband complains that every time he opens a drawer its full of " crap " , and I say then clean it out, I was just getting it off the tables etc.. I am however very blessed to have a cleaning lady who comes every 2 weeks and cleans the whole house, now there ares some things I would do different, but hey not complaining, she cleans good, and I don't have to, just vacuum and some picking up (mostly after dogs) in between cleaning.  Thank goodness.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Yeah, Marla, cleaning the two rooms visible from the front door wore me out!  And I didn't really clean, just hid stuff.  I did vacuum & get the worst cobwebs.  It took me a couple of hours to do the little I did, resting every few minutes.  I had to wear my back brace, and I did take a pain pill about an hour before the cleaning began.  I can remember, in the olden days, I could clean my entire house in 3-4 hours.  And not just hide stuff, but actually put everything away!  The place was spic & span.  Sadly, them days are long gone!

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: mebramer@...Date: Sat, 14 May 2011 10:46:50 -0600

Subject: Re: Crud--cardiac sarc

Rose, I'm sorry to hear this, My Mom's Cardiologist told me the same thing that 25% of Sarc patients have it in the heart upon autopsy.  You should talk to Tracie too, that is why she had to stop the Remicade, and she's doing much better now?  When you cleaned the kitchen and living room, did that just wear you out like you ran a marathon?  When I clean I am so wore out, I have to sit for awhile, then your back, I'm glad the pain is better, and I hope they can still do more to help you.

But, happy you got two kitties adopted, yeah:)  Hang in there, your in my prayers girlfriend! love ya, Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc.  I didn't get to talk to the doctor because he was in surgery today.  But the nurse said that I have heart involvement now , but that my heart " didn't look too bad. "   He wants to have a face-to-face meeting next week to go over everything & discuss treatment options.  He's also consulting my doc at the Indiana Univ. sarc clinic for his input.  I have a feeling that my back surgery's going to the back burner for awhile.  I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause.  I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years.  I just hope there is a better treatment than Pred.  Guess I'll do a little more research.  On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some.  The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs!  Apparently they don't consider me a drug seeker (which I'm not).  I'll have to find a really good place to hide them, or Ginny will help herself.  I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on.  Even with strips of tape or bandaids on the edges, they fell off before it was time.  So I think I'll do better with the pills, just taking them when needed.  Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.  Today is one of those days.  I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens.  She's taking two!!  Both of the girls!  Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

[Guest guest]

My appt with the cardiologist is Thursday morning. I'll let y'all know what happens next.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: mebramer@...Date: Tue, 17 May 2011 10:49:40 -0600Subject: Re: Crud--cardiac sarcRose, I had an Echo when before I could start Remicade, and was told it's normal. I get tachycardia from time to time, but it's pretty short time wise, If I do too much is usually when I notice it. I tell you it doesn't take much anymore to break out in a sweat and feel as though I've been doing weights for an hour, my husband pulled a muscle or something in his neck and it's been hurting, but he wanted our living area to be put back like it was preChristmas, he doesn't like change, surprised he went this long, anyway, my son and I moved the furniture around last night, and man that wore me out. Just trying to walk farther then I should does me in. but I don't think my heart is anything but reacting to doing too much and telling me to slow down. Did you meet with the doctor yet? as you can see I'm once again starting at the bottom of the emails and moving up! Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb Thanks, Jackie. What's weird is that for several months I've had these funny little sensations in my chest. I've pretty much ignored them; haven't told any doctors because I really can't describe them. They've become more frequent the last couple of months, so now I'm wondering if my imagination is playing games with me! I'll try to describe them in case any of you have had something similar. It's like a fluttery feeling in my chest & I have to hold my breath for a few seconds, then it will go away. When I had the echocardiogrm, several times the technician had me hold my breath, which I've never had to do before. I've had 3 or 4 echos since 1994, the last one at this same cardiology center. So now I'm wondering about those funny feelings. Of course, I can't remember if I had the feelings during the echo! Anyone have anything similar?Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc Rose Prayers are here and going out for you. Jackie Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............ Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Your in y prayers, Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

My appt with the cardiologist is Thursday morning.  I'll let y'all know what happens next.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: mebramer@...Date: Tue, 17 May 2011 10:49:40 -0600

Subject: Re: Crud--cardiac sarc

Rose, I had an Echo when before I could start Remicade, and was told it's normal.  I get tachycardia from time to time, but it's pretty short time wise, If I do too much is usually when I notice it.

I tell you it doesn't take much anymore to break out in  a sweat and feel as though I've been doing weights for an hour, my husband pulled a muscle or something in his neck and it's been hurting, but he wanted our living area to be put back like it was preChristmas, he doesn't like change, surprised he went this long, anyway, my son and I moved the furniture around last night, and man that wore me out.  Just trying to walk farther then I should does me in.  but I don't think my heart is anything but reacting to doing too much and telling me to slow down.

Did you meet with the doctor yet?  as you can see I'm once again starting at the bottom of the emails and moving up!  Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Thanks, Jackie.  What's weird is that for several months I've had these funny little sensations in my chest.  I've pretty much ignored them; haven't told any doctors because I really can't describe them.  They've become more frequent the last couple of months, so now I'm wondering if my imagination is playing games with me!  I'll try to describe them in case any of you have had something similar.  It's like a fluttery feeling in my chest & I have to hold my breath for a few seconds, then it will go away.  When I had the echocardiogrm, several times the technician had me hold my breath, which I've never had to do before.  I've had 3 or 4 echos since 1994, the last one at this same cardiology center.  So now I'm wondering about those funny feelings.  Of course, I can't remember if I had the feelings during the echo!  Anyone have anything similar?

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500

Subject: Re: Crud--cardiac sarc

Rose Prayers are here and going out for you. 

Jackie

 

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Crud--cardiac sarc

 

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc.  I didn't get to talk to the doctor because he was in surgery today.  But the nurse said that I have heart involvement now , but that my heart " didn't look too bad. "   He wants to have a face-to-face meeting next week to go over everything & discuss treatment options.  He's also consulting my doc at the Indiana Univ. sarc clinic for his input.  I have a feeling that my back surgery's going to the back burner for awhile.  I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause.  I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years.  I just hope there is a better treatment than Pred.  Guess I'll do a little more research.  On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some.  The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs!  Apparently they don't consider me a drug seeker (which I'm not).  I'll have to find a really good place to hide them, or Ginny will help herself.  I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on.  Even with strips of tape or bandaids on the edges, they fell off before it was time.  So I think I'll do better with the pills, just taking them when needed.  Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.  Today is one of those days.  I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens.  She's taking two!!  Both of the girls!  Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

[Guest guest]

Rose my pacer was the answer for controlling the bradycardia, and I had ablation surgery to stop the supertach. It has worked well. I have had the pacer since 1999. Don't mess around with it and you will be fine. The nerve impulse problems in the heart from the sarc have to be controlled. Getting the pacer isn't that bad, I've had pacer surgery 4 times. (The last time was 2005 and it was upgrade that squashed my CHF symptoms-I call it my boy band-InsyncIII) Take care dear friend (Coreg also seems to work really well with controlling my errant little miss beater)

To: neurosarcoidosis Sent: Fri, May 13, 2011 5:15:50 PMSubject: Crud--cardiac sarc

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the

bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking

two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

atrial fib///feels like fluttering, makes you breathy-I know it well, it isn't your imagination it's arrythmias

To: neurosarcoidosis Sent: Sun, May 15, 2011 5:45:43 PMSubject: RE: Crud--cardiac sarc

Thanks, Jackie. What's weird is that for several months I've had these funny little sensations in my chest. I've pretty much ignored them; haven't told any doctors because I really can't describe them. They've become more frequent the last couple of months, so now I'm wondering if my imagination is playing games with me! I'll try to describe them in case any of you have had something similar. It's like a fluttery feeling in my chest & I have to hold my breath for a few seconds, then it will go away. When I had the echocardiogrm, several times the technician had me hold my breath, which I've never had to do before. I've had 3 or 4 echos since 1994, the last one at this same cardiology center. So now I'm wondering about those funny feelings. Of course, I can't remember if I had the feelings during the echo! Anyone have anything similar?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc

Rose Prayers are here and going out for you.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Crud--cardiac sarc

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the

bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking

two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Connie, I had a major episode of atrial fib in 1994. It was different from that; I woke up with this crazy pulse. I couldn't count it because it was so fast & irregular. I actually felt fine, just the heartbeat. Sometimes there would be a long pause, then it would start up again. I waited a couple of hours because nurses just hate to go to the hospital, only to be told nothing's wrong. Anyway, I tried a couple of tricks for converting some arrhythmias & they didn't work. Then I got up & brushed my teeth & changed my underwear, in case the ambulance had to come for me (nuts!). Then I was lying in bed, a waterbed, and wondered if my heart just stopped, would I have time to wake up my husband, and would he realize that he couldn't do CPR in a waterbed. Finally I woke him up to take me to the ER. At the entrance to the ER ramp, I had him stop so that I could check my pulse again; if it was normal we were going back home. But it was still crazy, so I went on in. By that time I was a little light-headed. When I got on the monitor, my atrial rate was over 200, and the ventricles were only about 40. That's why it was impossible to count it. Anyway, it took a couple of hours & several different drugs to convert it to a normal rhythm. I stayed overnight & had an echo the next day, along with a chest xray, which picked up the enlarged hilar nodes. I had several more episodes over the next few weeks, as they tweaked my meds. Finally it all stopped after about 4 months. I was weaned off the meds & never had anything like that again. These episodes the past couple of years, with an irregular heartbeat, are probably atrial fib again, according to my doc. Because I'm taking the Toprol, which lowers my heartrate, the episodes feel differently. Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: conaugusta@...Date: Fri, 20 May 2011 22:33:59 -0700Subject: Re: Crud--cardiac sarcatrial fib///feels like fluttering, makes you breathy-I know it well, it isn't your imagination it's arrythmiasTo: neurosarcoidosis Sent: Sun, May 15, 2011 5:45:43 PMSubject: RE: Crud--cardiac sarc Thanks, Jackie. What's weird is that for several months I've had these funny little sensations in my chest. I've pretty much ignored them; haven't told any doctors because I really can't describe them. They've become more frequent the last couple of months, so now I'm wondering if my imagination is playing games with me! I'll try to describe them in case any of you have had something similar. It's like a fluttery feeling in my chest & I have to hold my breath for a few seconds, then it will go away. When I had the echocardiogrm, several times the technician had me hold my breath, which I've never had to do before. I've had 3 or 4 echos since 1994, the last one at this same cardiology center. So now I'm wondering about those funny feelings. Of course, I can't remember if I had the feelings during the echo! Anyone have anything similar?Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc Rose Prayers are here and going out for you. Jackie Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............ Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

The cardiologist said he would implant a pacer/defibrillator combo. I've done a lot of Internet research the past couple of days. The most consistent thing I've found is that there really is no consensus on treating cardiac sarc! It's unusual enough that there haven't been many studies.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 20 May 2011 22:21:54 -0700Subject: Re: Crud--cardiac sarc

Rose my pacer was the answer for controlling the bradycardia, and I had ablation surgery to stop the supertach. It has worked well. I have had the pacer since 1999. Don't mess around with it and you will be fine. The nerve impulse problems in the heart from the sarc have to be controlled. Getting the pacer isn't that bad, I've had pacer surgery 4 times. (The last time was 2005 and it was upgrade that squashed my CHF symptoms-I call it my boy band-InsyncIII) Take care dear friend (Coreg also seems to work really well with controlling my errant little miss beater)

To: neurosarcoidosis Sent: Fri, May 13, 2011 5:15:50 PMSubject: Crud--cardiac sarc

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Oh crap, that doesn't sound like fun Rose :/ Still, the technology is very

advanced nowadays ...

> The cardiologist said he would implant a pacer/defibrillator combo. I've done

a lot of Internet research the past couple of days. The most consistent thing

I've found is that there really is no consensus on treating cardiac sarc! It's

unusual enough that there haven't been many studies.

>

> Ramblin' Rose

> Co-owner/Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

>

>

> To: Neurosarcoidosis

> From: conaugusta@...

> Date: Fri, 20 May 2011 22:21:54 -0700

> Subject: Re: Crud--cardiac sarc

>

>

>

> Rose my pacer was the answer for controlling the bradycardia, and I had

ablation surgery to stop the supertach. It has worked well. I have had the

pacer since 1999. Don't mess around with it and you will be fine. The nerve

impulse problems in the heart from the sarc have to be controlled. Getting the

pacer isn't that bad, I've had pacer surgery 4 times. (The last time was 2005

and it was upgrade that squashed my CHF symptoms-I call it my boy

band-InsyncIII) Take care dear friend (Coreg also seems to work really well

with controlling my errant little miss beater)

>

>

> To: neurosarcoidosis

> Sent: Fri, May 13, 2011 5:15:50 PM

> Subject: Crud--cardiac sarc

>

>

> Well, I got some results of my heart MRI this afternoon & it looks like I've

got cardiac sarc. I didn't get to talk to the doctor because he was in surgery

today. But the nurse said that I have heart involvement now , but that my heart

" didn't look too bad. " He wants to have a face-to-face meeting next week to go

over everything & discuss treatment options. He's also consulting my doc at the

Indiana Univ. sarc clinic for his input. I have a feeling that my back

surgery's going to the back burner for awhile. I know from research that up to

25% of sarc patients have some cardiac involvement, but that many have no

symptoms & it's just found on autopsy after death from another cause. I don't

think I'm one of those folks because I've had the arrhythmias & tachycardia for

so many years. I just hope there is a better treatment than Pred. Guess I'll

do a little more research. On the bright side, my PCP just gave me a new script

for Percocet, which helps the back & leg pain some. The first rx for 60 tabs

lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't

consider me a drug seeker (which I'm not). I'll have to find a really good

place to hide them, or Ginny will help herself. I considered asking for the

fentanyl patches again, but I had a dickens of a time keeping those suckers on.

Even with strips of tape or bandaids on the edges, they fell off before it was

time. So I think I'll do better with the pills, just taking them when needed.

Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.

Today is one of those days. I tidied up the kitchen & living room (hid stuff in

bags & boxes & put them in the garage), then vacuumed because we had a potential

adopter coming to look at the kittens. She's taking two!! Both of the girls!

Just 2 more to find homes for.

>

> Ramblin' Rose

> Co-owner/Moderator

>

> A merry heart is good medicine. Proverbs 17:22

>

>

>

>

>

>

>

>

>

[Guest guest]

(Sorry this reply is so late -- I was sick from Sun. May 15 until Friday)I know what you mean about hiding stuff. My hubby just revealed on Friday night that he had invited six people over for a cook-out on Sunday. I cleaned for five hours yesterday and five hours today, and even with all of that I had to hide a bunch of stuff in the guest room --- I simply don't have any more energy left, and my porch is still a mess. The weird thing is that I just cleaned all of the public rooms pretty well a couple of weeks ago, but that was just for a good girlfriend -- I knew she wouldn't notice any "corners"The awful thing is that I don't really know any of the people who are coming, and none of them has ever been to my

house. I sure hope they don't go into the back yard because my flower gardens are filled with weeds.I guess I should be taking my ritalin more regularly (that's the only thing that helped me make it through these past two days), but my neuro told me it could be contributing to my headaches. Thank goodness I haven't had one in a while, though.--To: neurosarcoidosis Sent: Sun, May 15, 2011 5:49:46 PMSubject: RE: Crud--cardiac sarc

Yeah, Marla, cleaning the two rooms visible from the front door wore me out! And I didn't really clean, just hid stuff. I did vacuum & get the worst cobwebs. It took me a couple of hours to do the little I did, resting every few minutes. I had to wear my back brace, and I did take a pain pill about an hour before the cleaning began. I can remember, in the olden days, I could clean my entire house in 3-4 hours. And not just hide stuff, but actually put everything away! The place was spic & span. Sadly, them days are long gone!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sat, 14 May 2011 10:46:50 -0600Subject: Re: Crud--cardiac sarc

Rose, I'm sorry to hear this, My Mom's Cardiologist told me the same thing that 25% of Sarc patients have it in the heart upon autopsy. You should talk to Tracie too, that is why she had to stop the Remicade, and she's doing much better now? When you cleaned the kitchen and living room, did that just wear you out like you ran a marathon? When I clean I am so wore out, I have to sit for awhile, then your back, I'm glad the pain is better, and I hope they can still do more to help you. But, happy you got two kitties adopted, yeah:) Hang in there, your in my prayers girlfriend! love ya, Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the

bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking

two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Hey, ! Sorry I didn't call you back the other day. I spent a couple of days recuperating (basically sleeping) from my trip to Indy on Thursday. Then I ran my phone thru the washer. I've spent the last two days trying to dry it out. It works, but not dependably yet. Tonight I'm going to put it in the drying beads that I use for my hearing aid. I hope that will finish the process & save it. The memory chip seems to be okay, which is good since all my appts., etc. are on it. Anyway, I'll try to call you in a day or two when the phone is more reliable.

Re: housecleaning. I never notice how many cobwebs we have until company is coming, like Thanksgiving or something. Then I look up & go, Wow! Where'd all those come from? I actually enjoy cleaning out cobwebs, but I get vertigo when I look up, so I have to do it a bit at a time or give Webster (the spider web brush) to somebody else.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: rkelty99@...Date: Sun, 22 May 2011 10:10:17 -0700Subject: Re: Crud--cardiac sarc

(Sorry this reply is so late -- I was sick from Sun. May 15 until Friday)

I know what you mean about hiding stuff. My hubby just revealed on Friday night that he had invited six people over for a cook-out on Sunday. I cleaned for five hours yesterday and five hours today, and even with all of that I had to hide a bunch of stuff in the guest room --- I simply don't have any more energy left, and my porch is still a mess.

The weird thing is that I just cleaned all of the public rooms pretty well a couple of weeks ago, but that was just for a good girlfriend -- I knew she wouldn't notice any "corners"

The awful thing is that I don't really know any of the people who are coming, and none of them has ever been to my house. I sure hope they don't go into the back yard because my flower gardens are filled with weeds.

I guess I should be taking my ritalin more regularly (that's the only thing that helped me make it through these past two days), but my neuro told me it could be contributing to my headaches. Thank goodness I haven't had one in a while, though.

--

To: neurosarcoidosis Sent: Sun, May 15, 2011 5:49:46 PMSubject: RE: Crud--cardiac sarc

Yeah, Marla, cleaning the two rooms visible from the front door wore me out! And I didn't really clean, just hid stuff. I did vacuum & get the worst cobwebs. It took me a couple of hours to do the little I did, resting every few minutes. I had to wear my back brace, and I did take a pain pill about an hour before the cleaning began. I can remember, in the olden days, I could clean my entire house in 3-4 hours. And not just hide stuff, but actually put everything away! The place was spic & span. Sadly, them days are long gone!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sat, 14 May 2011 10:46:50 -0600Subject: Re: Crud--cardiac sarcRose, I'm sorry to hear this, My Mom's Cardiologist told me the same thing that 25% of Sarc patients have it in the heart upon autopsy. You should talk to Tracie too, that is why she had to stop the Remicade, and she's doing much better now? When you cleaned the kitchen and living room, did that just wear you out like you ran a marathon? When I clean I am so wore out, I have to sit for awhile, then your back, I'm glad the pain is better, and I hope they can still do more to help you. But, happy you got two kitties adopted, yeah:) Hang in there, your in my prayers girlfriend! love ya, Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

One of my worst made me look like I had suffered a stroke. I was lightheaded, face drooping, speech problems, they had to call Rescue and my little fiesty dog bit the policeman who came with the unit, and the Rescue unit hit a car backing out of my driveway with me in the back, interesting evening. Weird I know

To: neurosarcoidosis Sent: Sun, May 22, 2011 12:48:08 AMSubject: RE: Crud--cardiac sarc

Connie, I had a major episode of atrial fib in 1994. It was different from that; I woke up with this crazy pulse. I couldn't count it because it was so fast & irregular. I actually felt fine, just the heartbeat. Sometimes there would be a long pause, then it would start up again. I waited a couple of hours because nurses just hate to go to the hospital, only to be told nothing's wrong. Anyway, I tried a couple of tricks for converting some arrhythmias & they didn't work. Then I got up & brushed my teeth & changed my underwear, in case the ambulance had to come for me (nuts!). Then I was lying in bed, a waterbed, and wondered if my heart just stopped, would I have time to wake up my husband, and would he realize that he couldn't do CPR in a waterbed. Finally I woke him up to take me to the ER. At the entrance to the ER ramp, I had him stop so that I could check my pulse again;

if it was normal we were going back home. But it was still crazy, so I went on in. By that time I was a little light-headed. When I got on the monitor, my atrial rate was over 200, and the ventricles were only about 40. That's why it was impossible to count it. Anyway, it took a couple of hours & several different drugs to convert it to a normal rhythm. I stayed overnight & had an echo the next day, along with a chest xray, which picked up the enlarged hilar nodes. I had several more episodes over the next few weeks, as they tweaked my meds. Finally it all stopped after about 4 months. I was weaned off the meds & never had anything like that again. These episodes the past couple of years, with an irregular heartbeat, are probably atrial fib again, according to my doc. Because I'm taking the Toprol, which lowers my heartrate, the episodes feel differently.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 20 May 2011 22:33:59 -0700Subject: Re: Crud--cardiac sarc

atrial fib///feels like fluttering, makes you breathy-I know it well, it isn't your imagination it's arrythmias

To: neurosarcoidosis Sent: Sun, May 15, 2011 5:45:43 PMSubject: RE: Crud--cardiac sarc Thanks, Jackie. What's weird is that for several months I've had these funny little sensations in my chest. I've pretty much ignored them; haven't told any doctors because I really can't describe them. They've become more frequent the last couple of months, so now I'm wondering if my imagination is playing games with me! I'll try to describe them in case any of you have had something similar. It's like a fluttery feeling in my chest & I have to hold my breath for a few seconds, then it will go away. When I had the echocardiogrm, several times the technician had me hold my breath, which I've never had to do before. I've had 3 or 4 echos since 1994, the last one at this same cardiology center. So now I'm wondering about those funny feelings. Of course, I can't remember if I had the feelings during the echo! Anyone have anything similar?

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: shadowme810@...Date: Fri, 13 May 2011 22:45:19 -0500Subject: Re: Crud--cardiac sarc

Rose Prayers are here and going out for you.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Crud--cardiac sarc

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the

bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking

two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

The thing about not using a pacer or defibrillator is we have this nasty habit of going sudden death.

To: neurosarcoidosis Sent: Sun, May 22, 2011 1:04:34 AMSubject: RE: Crud--cardiac sarc

The cardiologist said he would implant a pacer/defibrillator combo. I've done a lot of Internet research the past couple of days. The most consistent thing I've found is that there really is no consensus on treating cardiac sarc! It's unusual enough that there haven't been many studies.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 20 May 2011 22:21:54 -0700Subject: Re: Crud--cardiac sarc

Rose my pacer was the answer for controlling the bradycardia, and I had ablation surgery to stop the supertach. It has worked well. I have had the pacer since 1999. Don't mess around with it and you will be fine. The nerve impulse problems in the heart from the sarc have to be controlled. Getting the pacer isn't that bad, I've had pacer surgery 4 times. (The last time was 2005 and it was upgrade that squashed my CHF symptoms-I call it my boy band-InsyncIII) Take care dear friend (Coreg also seems to work really well with controlling my errant little miss beater)

To: neurosarcoidosis Sent: Fri, May 13, 2011 5:15:50 PMSubject: Crud--cardiac sarc Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more

research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the

kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

I guess it is like anything else, if there aren't enough people they don't really seem to research it. I believe by sarc statitics we make up 5% w/cardiac involvement. By the way, I misread the other email. I'm glad your doctor is treating it aggressively, you ought to feel alot better with a more even, controlled beat, I did.

To: Neurosarcoidosis Sent: Sun, May 22, 2011 2:00:11 AMSubject: Re: Crud--cardiac sarcOh crap, that doesn't sound like fun Rose :/ Still, the technology is very advanced nowadays ... > The cardiologist said he would implant a pacer/defibrillator combo. I've done a lot of Internet research the past couple of days. The most consistent thing I've found is that there really is no consensus on treating cardiac sarc! It's unusual enough that there haven't been many studies.> > Ramblin' Rose> Co-owner/Moderator> > A merry

heart is good medicine. Proverbs 17:22> > > > > > > > To: Neurosarcoidosis > Date: Fri, 20 May 2011 22:21:54 -0700> Subject: Re: Crud--cardiac sarc> > > > Rose my pacer was the answer for controlling the bradycardia, and I had ablation surgery to stop the supertach. It has worked well. I have had the pacer since 1999. Don't mess around with it and you will be fine. The nerve impulse problems in the heart from the sarc have to be controlled. Getting the pacer isn't that bad, I've had pacer surgery 4 times. (The last time was 2005 and it was upgrade that squashed

my CHF symptoms-I call it my boy band-InsyncIII) Take care dear friend (Coreg also seems to work really well with controlling my errant little miss beater)> > > To: neurosarcoidosis > Sent: Fri, May 13, 2011 5:15:50 PM> Subject: Crud--cardiac sarc> > > Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss

treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered

asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking two!! Both of the girls! Just 2 more to find homes for.> > Ramblin' Rose> Co-owner/Moderator> > A merry heart is good medicine. Proverbs 17:22> > > > > > > > > ------------------------------------~~~~ *** ~~~ *** ~~~ ***

~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

, I'm sure they're good people, and if they are they are not coming to inspect your home (which from the way you sound probably looks perfectly fine, just not to you) I bet the cook out was great, I hope you had a good time

To: Neurosarcoidosis Sent: Sun, May 22, 2011 1:10:17 PMSubject: Re: Crud--cardiac sarc

(Sorry this reply is so late -- I was sick from Sun. May 15 until Friday)

I know what you mean about hiding stuff. My hubby just revealed on Friday night that he had invited six people over for a cook-out on Sunday. I cleaned for five hours yesterday and five hours today, and even with all of that I had to hide a bunch of stuff in the guest room --- I simply don't have any more energy left, and my porch is still a mess.

The weird thing is that I just cleaned all of the public rooms pretty well a couple of weeks ago, but that was just for a good girlfriend -- I knew she wouldn't notice any "corners"

The awful thing is that I don't really know any of the people who are coming, and none of them has ever been to my house. I sure hope they don't go into the back yard because my flower gardens are filled with weeds.

I guess I should be taking my ritalin more regularly (that's the only thing that helped me make it through these past two days), but my neuro told me it could be contributing to my headaches. Thank goodness I haven't had one in a while, though.

--

To: neurosarcoidosis Sent: Sun, May 15, 2011 5:49:46 PMSubject: RE: Crud--cardiac sarc

Yeah, Marla, cleaning the two rooms visible from the front door wore me out! And I didn't really clean, just hid stuff. I did vacuum & get the worst cobwebs. It took me a couple of hours to do the little I did, resting every few minutes. I had to wear my back brace, and I did take a pain pill about an hour before the cleaning began. I can remember, in the olden days, I could clean my entire house in 3-4 hours. And not just hide stuff, but actually put everything away! The place was spic & span. Sadly, them days are long gone!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sat, 14 May 2011 10:46:50 -0600Subject: Re: Crud--cardiac sarcRose, I'm sorry to hear this, My Mom's Cardiologist told me the same thing that 25% of Sarc patients have it in the heart upon autopsy. You should talk to Tracie too, that is why she had to stop the Remicade, and she's doing much better now? When you cleaned the kitchen and living room, did that just wear you out like you ran a marathon? When I clean I am so wore out, I have to sit for awhile, then your back, I'm glad the pain is better, and I hope they can still do more to help you. But, happy you got two kitties adopted, yeah:) Hang in there, your in my prayers girlfriend! love ya, Marla "Fear less, hope more; Eat less, chew more; Whine less,

breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc. I didn't get to talk to the doctor because he was in surgery today. But the nurse said that I have heart involvement now , but that my heart "didn't look too bad." He wants to have a face-to-face meeting next week to go over everything & discuss treatment options. He's also consulting my doc at the Indiana Univ. sarc clinic for his input. I have a feeling that my back surgery's going to the back burner for awhile. I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause. I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years. I just hope there is a better treatment than Pred. Guess I'll do a little more research. On the

bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some. The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs! Apparently they don't consider me a drug seeker (which I'm not). I'll have to find a really good place to hide them, or Ginny will help herself. I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on. Even with strips of tape or bandaids on the edges, they fell off before it was time. So I think I'll do better with the pills, just taking them when needed. Sometimes I can go 2-3 days without taking any, then I might need 2 in one day. Today is one of those days. I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens. She's taking

two!! Both of the girls! Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Rose, I'm sorry to hear this, always something, does this put your back on the " back burner " no pun intended.  ya and the sudden death, well that doesn't sound like much fun either!!    Hang in there my friend, it can only get better right:)  

love ya,Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

The thing about not using a pacer or defibrillator is we have this nasty habit of going sudden death. 

To: neurosarcoidosis

Sent: Sun, May 22, 2011 1:04:34 AMSubject: RE: Crud--cardiac sarc 

The cardiologist said he would implant a pacer/defibrillator combo.  I've done a lot of Internet research the past couple of days.  The most consistent thing I've found is that there really is no consensus on treating cardiac sarc!  It's unusual enough that there haven't been many studies.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 20 May 2011 22:21:54 -0700

Subject: Re: Crud--cardiac sarc

Rose my pacer was the answer for controlling the bradycardia, and I had ablation surgery to stop the supertach.  It has worked well.  I have had the pacer since 1999.  Don't mess around with it and you will be fine.  The nerve impulse problems in the heart from the sarc have to be controlled.  Getting the pacer isn't that bad, I've had pacer surgery 4 times.  (The last time was 2005 and it was upgrade that squashed my CHF symptoms-I call it my boy band-InsyncIII)  Take care dear friend   (Coreg also seems to work really well with controlling my errant little miss beater)

To: neurosarcoidosis

Sent: Fri, May 13, 2011 5:15:50 PMSubject: Crud--cardiac sarc  Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc.  I didn't get to talk to the doctor because he was in surgery today.  But the nurse said that I have heart involvement now , but that my heart " didn't look too bad. "   He wants to have a face-to-face meeting next week to go over everything & discuss treatment options.  He's also consulting my doc at the Indiana Univ. sarc clinic for his input.  I have a feeling that my back surgery's going to the back burner for awhile.  I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause.  I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years.  I just hope there is a better treatment than Pred.  Guess I'll do a little more

research.  On the bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some.  The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs!  Apparently they don't consider me a drug seeker (which I'm not).  I'll have to find a really good place to hide them, or Ginny will help herself.  I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on.  Even with strips of tape or bandaids on the edges, they fell off before it was time.  So I think I'll do better with the pills, just taking them when needed.  Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.  Today is one of those days.  I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the

kittens.  She's taking two!!  Both of the girls!  Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

[Guest guest]

, I know how you feel though,My Mom turns 90 in Aug, and I've invited all my family out, there are 7 of us, all but one brother is coming, and I am now starting to go through rooms, but I will need to recruit my family to help with the last minute things. My husband does the cooking when we have a big crowd, which is a huge blessing! 

I hope you had a good time, I have a room that is full of stuff, but now need to clear it out, as I'm sure some of my family will be staying with us, my sister for sure!  Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

, I'm sure they're good people, and if they are they are not coming to inspect your home (which from the way you sound probably looks perfectly fine, just not to you)   I bet the cook out was great, I hope you had a good time

To: Neurosarcoidosis

Sent: Sun, May 22, 2011 1:10:17 PMSubject: Re: Crud--cardiac sarc 

(Sorry this reply is so late -- I was sick from Sun. May 15 until Friday)

I know what you mean about hiding stuff.  My hubby just revealed on Friday night that he had invited six people over for a cook-out on Sunday. I cleaned for five hours yesterday and five hours today, and even with all of that I had to hide a bunch of stuff in the guest room --- I simply don't have any more energy left, and my porch is still a mess. 

The weird thing is that I just cleaned all of the public rooms pretty well a couple of weeks ago, but that was just for a good girlfriend -- I knew she wouldn't notice any " corners "

The awful thing is that I don't really know any of the people who are coming, and none of them has ever been to my house.  I sure hope they don't go into the back yard because my flower gardens are filled with weeds.

I guess I should be taking my ritalin more regularly (that's the only thing that helped me make it through these past two days), but my neuro told me it could be contributing to my headaches.  Thank goodness I haven't had one in a while, though.

--

To: neurosarcoidosis

Sent: Sun, May 15, 2011 5:49:46 PMSubject: RE: Crud--cardiac sarc

 

Yeah, Marla, cleaning the two rooms visible from the front door wore me out!  And I didn't really clean, just hid stuff.  I did vacuum & get the worst cobwebs.  It took me a couple of hours to do the little I did, resting every few minutes.  I had to wear my back brace, and I did take a pain pill about an hour before the cleaning began.  I can remember, in the olden days, I could clean my entire house in 3-4 hours.  And not just hide stuff, but actually put everything away!  The place was spic & span.  Sadly, them days are long gone!

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22 

 

To: Neurosarcoidosis From: mebramer@...Date: Sat, 14 May 2011 10:46:50 -0600

Subject: Re: Crud--cardiac sarcRose, I'm sorry to hear this, My Mom's Cardiologist told me the same thing that 25% of Sarc patients have it in the heart upon autopsy.  You should talk to Tracie too, that is why she had to stop the Remicade, and she's doing much better now?  When you cleaned the kitchen and living room, did that just wear you out like you ran a marathon?  When I clean I am so wore out, I have to sit for awhile, then your back, I'm glad the pain is better, and I hope they can still do more to help you.

But, happy you got two kitties adopted, yeah:)  Hang in there, your in my prayers girlfriend! love ya, Marla " Fear less, hope more; Eat less, chew more; Whine less,

breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Well, I got some results of my heart MRI this afternoon & it looks like I've got cardiac sarc.  I didn't get to talk to the doctor because he was in surgery today.  But the nurse said that I have heart involvement now , but that my heart " didn't look too bad. "   He wants to have a face-to-face meeting next week to go over everything & discuss treatment options.  He's also consulting my doc at the Indiana Univ. sarc clinic for his input.  I have a feeling that my back surgery's going to the back burner for awhile.  I know from research that up to 25% of sarc patients have some cardiac involvement, but that many have no symptoms & it's just found on autopsy after death from another cause.  I don't think I'm one of those folks because I've had the arrhythmias & tachycardia for so many years.  I just hope there is a better treatment than Pred.  Guess I'll do a little more research.  On the

bright side, my PCP just gave me a new script for Percocet, which helps the back & leg pain some.  The first rx for 60 tabs lasted me 2 months, so this time they wrote for 120 tabs!  Apparently they don't consider me a drug seeker (which I'm not).  I'll have to find a really good place to hide them, or Ginny will help herself.  I considered asking for the fentanyl patches again, but I had a dickens of a time keeping those suckers on.  Even with strips of tape or bandaids on the edges, they fell off before it was time.  So I think I'll do better with the pills, just taking them when needed.  Sometimes I can go 2-3 days without taking any, then I might need 2 in one day.  Today is one of those days.  I tidied up the kitchen & living room (hid stuff in bags & boxes & put them in the garage), then vacuumed because we had a potential adopter coming to look at the kittens.  She's taking

two!!  Both of the girls!  Just 2 more to find homes for.

Ramblin' RoseCo-owner/Moderator

 A merry heart is good medicine.  Proverbs 17:22