Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hello everyone... I kind of " checked out " last Wednesday morning (March 24th) and am just now somewhat getting around and back on e-mail to see what is up with you guys and thinking I'd give you a quick update on me. When I say I kind of " checked out " Wednesday, my heart rate dropped so low that I passed out at work while talking to my primary care physician about seeing a cardiologist. Seems I gave everyone a real scare. I don't have any memories of what happened between the time I said " I feel like I might pass out " until I woke up in the ER with family, friends & medical staff surrounding me. They hooked me up to heart monitors (EKG) and discovered that (I think) the electrical transmitters in my heart were not working (possibly sarcoid in heart?). Plus for about three weeks now my what use to be normal blood pressure (120/80 after I got off steroids) has been more around 140+ over 90+. Well, I am sitting here now recovering from having a pacemaker put in my body to keep my heart beating properly just 19 days before turning 40. What a birthday present! It was also the 5th anniversary of the day I adopted my son - both days are one I will never forget. Word from the surgeon is that they " lost " me (flatlined) while they were implanting my pacemaker. Seems they had trouble find a place for the second lead that would work. Once they did, he literally screwed the lead in place so it would not move. I re-read Aisha's article and the paragraph about brainstem involvement caught my eye. From what I understand, the cardiologist is planning on doing some " studies " on me (not sure exactly what that means yet until I see him April 8) I think regarding sarcoid in the heart. I KNOW there are no tests to prove or verify NS? Any thoughts you'd like to share? I saw my neuro-surgeon today and he affirmed how " serious " this was (think I had figured that out) and also offered a lot of support and encouragement. It is nice to talk with a doctor who talks with you and not at you. Please keep my family, friends & medical folks in your prayers. The " reality " of my illness has sunk in to everyone except my mom. She is in denial. Christy Denton, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 OMG, Christy sounds like you've really gone through the mill, the last few weeks, we are glad to have you back and sorry you had such a horrible time.. and yes, Sarc of the Heart is nothing to play with, we have a few members here with cardiac sarc the first one that pops in to mind is Shar, but she is to sick at the moment to reply and then Kay Pullen, that helped host the Indy Sarcoidosis Confrence this last year, I'm sure she would be glad to help you if she can... I found a link that you can start with but there is nothing like talking to someone that really knows first hand... Hope you feel better soon, Christy.... http://www.findarticles.com/cf_dls/m0984/1_123/97115919/p1/article.jhtml Just click on the link above and it should take you right there... Hugs, -- In My Heart... Hello everyone... I kind of " checked out " last Wednesday morning (March 24th) and am just now somewhat getting around and back on e-mail to see what is up with you guys and thinking I'd give you a quick update on me. When I say I kind of " checked out " Wednesday, my heart rate dropped so low that I passed out at work while talking to my primary care physician about seeing a cardiologist. Seems I gave everyone a real scare. I don't have any memories of what happened between the time I said " I feel like I might pass out " until I woke up in the ER with family, friends & medical staff surrounding me. They hooked me up to heart monitors (EKG) and discovered that (I think) the electrical transmitters in my heart were not working (possibly sarcoid in heart?). Plus for about three weeks now my what use to be normal blood pressure (120/80 after I got off steroids) has been more around 140+ over 90+. Well, I am sitting here now recovering from having a pacemaker put in my body to keep my heart beating properly just 19 days before turning 40. What a birthday present! It was also the 5th anniversary of the day I adopted my son - both days are one I will never forget. Word from the surgeon is that they " lost " me (flatlined) while they were implanting my pacemaker. Seems they had trouble find a place for the second lead that would work. Once they did, he literally screwed the lead in place so it would not move. I re-read Aisha's article and the paragraph about brainstem involvement caught my eye. From what I understand, the cardiologist is planning on doing some " studies " on me (not sure exactly what that means yet until I see him April 8) I think regarding sarcoid in the heart. I KNOW there are no tests to prove or verify NS? Any thoughts you'd like to share? I saw my neuro-surgeon today and he affirmed how " serious " this was (think I had figured that out) and also offered a lot of support and encouragement. It is nice to talk with a doctor who talks with you and not at you. Please keep my family, friends & medical folks in your prayers. The reality " of my illness has sunk in to everyone except my mom. She is in denial. Christy Denton, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 OMG, Christy sounds like you've really gone through the mill, the last few weeks, we are glad to have you back and sorry you had such a horrible time.. and yes, Sarc of the Heart is nothing to play with, we have a few members here with cardiac sarc the first one that pops in to mind is Shar, but she is to sick at the moment to reply and then Kay Pullen, that helped host the Indy Sarcoidosis Confrence this last year, I'm sure she would be glad to help you if she can... I found a link that you can start with but there is nothing like talking to someone that really knows first hand... Hope you feel better soon, Christy.... http://www.findarticles.com/cf_dls/m0984/1_123/97115919/p1/article.jhtml Just click on the link above and it should take you right there... Hugs, -- In My Heart... Hello everyone... I kind of " checked out " last Wednesday morning (March 24th) and am just now somewhat getting around and back on e-mail to see what is up with you guys and thinking I'd give you a quick update on me. When I say I kind of " checked out " Wednesday, my heart rate dropped so low that I passed out at work while talking to my primary care physician about seeing a cardiologist. Seems I gave everyone a real scare. I don't have any memories of what happened between the time I said " I feel like I might pass out " until I woke up in the ER with family, friends & medical staff surrounding me. They hooked me up to heart monitors (EKG) and discovered that (I think) the electrical transmitters in my heart were not working (possibly sarcoid in heart?). Plus for about three weeks now my what use to be normal blood pressure (120/80 after I got off steroids) has been more around 140+ over 90+. Well, I am sitting here now recovering from having a pacemaker put in my body to keep my heart beating properly just 19 days before turning 40. What a birthday present! It was also the 5th anniversary of the day I adopted my son - both days are one I will never forget. Word from the surgeon is that they " lost " me (flatlined) while they were implanting my pacemaker. Seems they had trouble find a place for the second lead that would work. Once they did, he literally screwed the lead in place so it would not move. I re-read Aisha's article and the paragraph about brainstem involvement caught my eye. From what I understand, the cardiologist is planning on doing some " studies " on me (not sure exactly what that means yet until I see him April 8) I think regarding sarcoid in the heart. I KNOW there are no tests to prove or verify NS? Any thoughts you'd like to share? I saw my neuro-surgeon today and he affirmed how " serious " this was (think I had figured that out) and also offered a lot of support and encouragement. It is nice to talk with a doctor who talks with you and not at you. Please keep my family, friends & medical folks in your prayers. The reality " of my illness has sunk in to everyone except my mom. She is in denial. Christy Denton, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Christy, I know now that it must have been you that I had spoke to about meeting for lunch and then forgot, but it looks like you have had your hands full. I am so sorry about forgetting, and am definitely sorry that you are having such a horrible time of it being so young especially. I will be praying for you and wishing the best. Maybe we can get it together again some time in the future when my brain is working and you are feeling better. your friend in Plano, Jeanna -- In My Heart... Hello everyone... I kind of " checked out " last Wednesday morning (March 24th) and am just now somewhat getting around and back on e-mail to see what is up with you guys and thinking I'd give you a quick update on me. When I say I kind of " checked out " Wednesday, my heart rate dropped so low that I passed out at work while talking to my primary care physician about seeing a cardiologist. Seems I gave everyone a real scare. I don't have any memories of what happened between the time I said " I feel like I might pass out " until I woke up in the ER with family, friends & medical staff surrounding me. They hooked me up to heart monitors (EKG) and discovered that (I think) the electrical transmitters in my heart were not working (possibly sarcoid in heart?). Plus for about three weeks now my what use to be normal blood pressure (120/80 after I got off steroids) has been more around 140+ over 90+. Well, I am sitting here now recovering from having a pacemaker put in my body to keep my heart beating properly just 19 days before turning 40. What a birthday present! It was also the 5th anniversary of the day I adopted my son - both days are one I will never forget. Word from the surgeon is that they " lost " me (flatlined) while they were implanting my pacemaker. Seems they had trouble find a place for the second lead that would work. Once they did, he literally screwed the lead in place so it would not move. I re-read Aisha's article and the paragraph about brainstem involvement caught my eye. From what I understand, the cardiologist is planning on doing some " studies " on me (not sure exactly what that means yet until I see him April 8) I think regarding sarcoid in the heart. I KNOW there are no tests to prove or verify NS? Any thoughts you'd like to share? I saw my neuro-surgeon today and he affirmed how " serious " this was (think I had figured that out) and also offered a lot of support and encouragement. It is nice to talk with a doctor who talks with you and not at you. Please keep my family, friends & medical folks in your prayers. The reality " of my illness has sunk in to everyone except my mom. She is in denial. Christy Denton, Texas ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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