RE: Crud--cardiac sarc

[Guest guest]

Wow, Connie, you don't sugarcoat it, do you, kid?

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

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 23 May 2011 19:11:37 -0700Subject: Re: Crud--cardiac sarc

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 am so sorry Rose, I misread the email and thought your doctor was just passing it off, and nixing the pacemaker. It scared me to death, and I wanted you to fight to survive. I couldn't stand it if something happened to you that could have been prevented. When I went back and my brain correctly read the email I felt awful. As you know from most of my emails I am not usually a blunt person. Before my pacer, my heart was malfunctioning so badly, I know I would not be here now if they had not put it in. Not being dramatic, it's just what was happening. It was insane, and the incidents were so quick, I didn't even have time to say help me, I was just gone, and I felt like dirt. The pacer added alot of

quality to my life, and considering I'm 99.7% paced; we are inseperable. Please forgive me, I can't stand the thought of hurting anyone.

To: neurosarcoidosis Sent: Tue, May 24, 2011 4:05:53 PMSubject: RE: Crud--cardiac sarc

Wow, Connie, you don't sugarcoat it, do you, kid?

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

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 23 May 2011 19:11:37 -0700Subject: Re: Crud--cardiac sarc

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]

Connie, Connie, Connie! I wasn't offended. I meant to tease you. I am very touched by your concern. It's amazing how quickly we develop such a feeling of family, isn't it? Thank you for the lovely message.

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

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 20:09:36 -0700Subject: Re: Crud--cardiac sarc

I am so sorry Rose, I misread the email and thought your doctor was just passing it off, and nixing the pacemaker. It scared me to death, and I wanted you to fight to survive. I couldn't stand it if something happened to you that could have been prevented. When I went back and my brain correctly read the email I felt awful. As you know from most of my emails I am not usually a blunt person. Before my pacer, my heart was malfunctioning so badly, I know I would not be here now if they had not put it in. Not being dramatic, it's just what was happening. It was insane, and the incidents were so quick, I didn't even have time to say help me, I was just gone, and I felt like dirt. The pacer added alot of quality to my life, and considering I'm 99.7% paced; we are inseperable. Please forgive me, I can't stand the thought of hurting anyone.

To: neurosarcoidosis Sent: Tue, May 24, 2011 4:05:53 PMSubject: RE: Crud--cardiac sarc

Wow, Connie, you don't sugarcoat it, do you, kid?

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

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 23 May 2011 19:11:37 -0700Subject: Re: Crud--cardiac sarc

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]

Thanks Rose. Trust me I come from a family of sweet, amazing cut ups. I'm glad your not upset with me. Take care.

To: neurosarcoidosis Sent: Fri, May 27, 2011 11:21:57 PMSubject: RE: Crud--cardiac sarc

Connie, Connie, Connie! I wasn't offended. I meant to tease you. I am very touched by your concern. It's amazing how quickly we develop such a feeling of family, isn't it? Thank you for the lovely message.

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

To: Neurosarcoidosis From: conaugusta@...Date: Fri, 27 May 2011 20:09:36 -0700Subject: Re: Crud--cardiac sarc

I am so sorry Rose, I misread the email and thought your doctor was just passing it off, and nixing the pacemaker. It scared me to death, and I wanted you to fight to survive. I couldn't stand it if something happened to you that could have been prevented. When I went back and my brain correctly read the email I felt awful. As you know from most of my emails I am not usually a blunt person. Before my pacer, my heart was malfunctioning so badly, I know I would not be here now if they had not put it in. Not being dramatic, it's just what was happening. It was insane, and the incidents were so quick, I didn't even have time to say help me, I was just gone, and I felt like dirt. The pacer added alot of quality to my life, and considering I'm 99.7% paced; we are inseperable. Please forgive me, I can't stand the thought of hurting anyone.

To: neurosarcoidosis Sent: Tue, May 24, 2011 4:05:53 PMSubject: RE: Crud--cardiac sarc Wow, Connie, you don't sugarcoat it, do you, kid?

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

To: Neurosarcoidosis From: conaugusta@...Date: Mon, 23 May 2011 19:11:37 -0700Subject: Re: Crud--cardiac sarc

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