Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 ,Your in my thoughts and prayers. Glad you're home. My rheum has talked about remicade infusions for me depending on what my s Hopkins dr says. It sounds like a very rough road.Blessings,Beckywendy_cidp wrote: Yikes, what a summer I am having! July my port-a-cath gets kinked and has to be removed. My internist deems it too dangerous to put in another one due to my compromised immune system. I have lousy veins so my monthly remicade infusions will be long and painful without the port-a-cath. Then two weeks later I develop HSV-1 pneumonia. Nearly bought it, I can tell ya. Luckily responded to the IV cocktail they put me on but I was almost airlifted to a big city hospital because I was so sick, so fast and the results of the CT angiogram were so mysterious they had me in airborne isolation for 2 days! This is the ugly side of all the immune-suppressing they have to put us on. Truly scary. Really feel like being crushed between a rock and a hard place. Either the disease makes us sick or the medications kill us. At least I am making a good recovery. I'm home now and am finally allowed out of bed. I hope to make cookies today. My older son is coming home for a few days to visit. Hope the rest of you have had a chance for some fun this summer. - Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Becky, Who is your dr. at JK? I saw a neurologist there who is an MS specialist. He is the one who suggested NS. I am on Imuran right now but I am started a medrol dosepak because I now have an exacerbation, but who knows which disease it is. Oh well, just let me know if you don't mind. Terri G. Yikes, what a summer I am having! July my port-a-cath gets kinked and > has to be removed. My internist deems it too dangerous to put in > another one due to my compromised immune system. I have lousy veins so > my monthly remicade infusions will be long and painful without the > port-a-cath. Then two weeks later I develop HSV-1 pneumonia. Nearly > bought it, I can tell ya. Luckily responded to the IV cocktail they > put me on but I was almost airlifted to a big city hospital because I > was so sick, so fast and the results of the CT angiogram were so > mysterious they had me in airborne isolation for 2 days! This is the > ugly side of all the immune-suppressing they have to put us on. Truly > scary. Really feel like being crushed between a rock and a hard place. > Either the disease makes us sick or the medications kill us. > At least I am making a good recovery. I'm home now and am finally > allowed out of bed. I hope to make cookies today. My older son is > coming home for a few days to visit. > Hope the rest of you have had a chance for some fun this summer. > - > > > > > > > --------------------------------- > Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Becky, What I meant to type was JH for s Hopkins. I having a sh**ty brain day. Wooh hoo. Terri Yikes, what a summer I am having! > July my port-a-cath gets kinked and > > has to be removed. My internist deems it too dangerous to put in > > another one due to my compromised immune system. I have lousy veins so > > my monthly remicade infusions will be long and painful without the > > port-a-cath. Then two weeks later I develop HSV-1 pneumonia. Nearly > > bought it, I can tell ya. Luckily responded to the IV cocktail they > > put me on but I was almost airlifted to a big city hospital because I > > was so sick, so fast and the results of the CT angiogram were so > > mysterious they had me in airborne isolation for 2 days! This is the > > ugly side of all the immune-suppressing they have to put us on. Truly > > scary. Really feel like being crushed between a rock and a hard place. > > Either the disease makes us sick or the medications kill us. > > At least I am making a good recovery. I'm home now and am finally > > allowed out of bed. I hope to make cookies today. My older son is > > coming home for a few days to visit. > > Hope the rest of you have had a chance for some fun this summer. > > - > > > > > > > > > > > > > > --------------------------------- > > Boardwalk for $500? In 2007? Ha! > > Play Monopoly Here and Now (it's updated for today's economy) at > Yahoo! Games. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2007 Report Share Posted August 23, 2007 Hi Terri,I see Dr. Moller but I didn't specify a particular doctor. They get your records from your referring doctor, decide whether to accept your case or not, and then usually if they do you get an initial appt in about 4 months. The JH Sarcoidosis Clinic is part of the pulmonology clinic and my dr there is a pulmonologist. When I first went to him I didn't know I had cardiac sarcoidosis (I had extensive pulmonary nodules and infiltrates). All the doctors in that clinic are really good so it doesn't matter who you see.Blessings,Beckymosaicgirl1 wrote: Becky, Who is your dr. at JK? I saw a neurologist there who is an MS specialist. He is the one who suggested NS. I am on Imuran right now but I am started a medrol dosepak because I now have an exacerbation, but who knows which disease it is. Oh well, just let me know if you don't mind. Terri G. Yikes, what a summer I am having! July my port-a-cath gets kinked and > has to be removed. My internist deems it too dangerous to put in > another one due to my compromised immune system. I have lousy veins so > my monthly remicade infusions will be long and painful without the > port-a-cath. Then two weeks later I develop HSV-1 pneumonia. Nearly > bought it, I can tell ya. Luckily responded to the IV cocktail they > put me on but I was almost airlifted to a big city hospital because I > was so sick, so fast and the results of the CT angiogram were so > mysterious they had me in airborne isolation for 2 days! This is the > ugly side of all the immune-suppressing they have to put us on. Truly > scary. Really feel like being crushed between a rock and a hard place. > Either the disease makes us sick or the medications kill us. > At least I am making a good recovery. I'm home now and am finally > allowed out of bed. I hope to make cookies today. My older son is > coming home for a few days to visit. > Hope the rest of you have had a chance for some fun this summer. > - > > > > > > > --------------------------------- > Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2007 Report Share Posted August 23, 2007 Dang, , you don't do things half-way, do you?!? Let's hope the worst is over for the time being. Enjoy your son's visit, okay? Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: What a bummer summerDate: Wed, 22 Aug 2007 17:30:34 -0000 Yikes, what a summer I am having! July my port-a-cath gets kinked andhas to be removed. My internist deems it too dangerous to put inanother one due to my compromised immune system. I have lousy veins somy monthly remicade infusions will be long and painful without theport-a-cath. Then two weeks later I develop HSV-1 pneumonia. Nearlybought it, I can tell ya. Luckily responded to the IV cocktail theyput me on but I was almost airlifted to a big city hospital because Iwas so sick, so fast and the results of the CT angiogram were somysterious they had me in airborne isolation for 2 days! This is theugly side of all the immune-suppressing they have to put us on. Trulyscary. Really feel like being crushed between a rock and a hard place.Either the disease makes us sick or the medications kill us.At least I am making a good recovery. I'm home now and am finallyallowed out of bed. I hope to make cookies today. My older son iscoming home for a few days to visit.Hope the rest of you have had a chance for some fun this summer.- Tease your brain--play Clink! Win cool prizes! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2007 Report Share Posted August 23, 2007 My rheum has talked about remicade infusions for me depending on what my s Hopkins dr says. It sounds like a very rough road. Becky, If you don't have the allergic reactions like Deb and Darlene had-- Remicade is not a hard medication to take. I do find that after having been on it for the last almost 2yrs- that I take a couple of days longer to rebound back after my infusion, but at least the bone and joint pain are gone within a couple of hours following my infusion. I find that I"m just a bit more tired for 4 days instead of 2 or 3 as I was in the beginning. I then have 3 weeks where I'm very comfortable, then the last week (I am on a 28day infusion time) that my lymph nodes get swollen and press on nerves- which makes the pain worse. It is however, much more tolerable than I was prior to the Remicade. To end up with an infection- pneumonia or sinus to uti-- you just have to learn to tune in to your body- and listen to the signals it sends out. If you catch them early- for me it's been easy to handle. Not fun, but easy. If I'd had the experience that Darlene had-- I wouldn't be saying that. Take care, Tracie NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2007 Report Share Posted August 25, 2007 Hi Tracie,Thanks so much for this info. Haven't been feeling well lately so not on the computer as much. Will be glad to get this trip over with to JH.Blessings,Beckytiodaat@... wrote: In a message dated 8/22/2007 3:47:00 P.M. Pacific Daylight Time, macandtosh626 (AT) yahoo (DOT) com writes: My rheum has talked about remicade infusions for me depending on what my s Hopkins dr says. It sounds like a very rough road. Becky, If you don't have the allergic reactions like Deb and Darlene had-- Remicade is not a hard medication to take. I do find that after having been on it for the last almost 2yrs- that I take a couple of days longer to rebound back after my infusion, but at least the bone and joint pain are gone within a couple of hours following my infusion. I find that I"m just a bit more tired for 4 days instead of 2 or 3 as I was in the beginning. I then have 3 weeks where I'm very comfortable, then the last week (I am on a 28day infusion time) that my lymph nodes get swollen and press on nerves- which makes the pain worse. It is however, much more tolerable than I was prior to the Remicade. To end up with an infection- pneumonia or sinus to uti-- you just have to learn to tune in to your body- and listen to the signals it sends out. If you catch them early- for me it's been easy to handle. Not fun, but easy. If I'd had the experience that Darlene had-- I wouldn't be saying that. Take care, Tracie NS Co-owner/moderatorGet a sneak peek of the all-new AOL.com. Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 > To end up with an infection- pneumonia or sinus to uti-- you just have to > learn to tune in to your body- and listen to the signals it sends out. If you > catch them early- for me it's been easy to handle. Not fun, but easy. Sometimes tuning in isn't enough. I was a bit short of breath climbing stairs one day and literally unable to breath the next. Hit me in 24 hours. By 36 hours I was in intensive care. Turned out to be a rare herpes simplex 1 pneumonia that only immune-suppressed patients get. No warning. Just really sick. I have to say that remicade has made my life so much more livable, even with setbacks like this one. I am no longer crippled with intense foot and leg pain, my facial pain is gone. I used to have to take 3 anti-seizure medications to control that pain. So I wouldn't stop taking remicade. Just be aware that we are so vulnerable to other health issues when we take these. What seems like a no-big-deal symptom may be very serious. When I went to the ER the second day I was sick I didn't even realize my chest pain was serious. I was complaining about a fever and mouth sores! Luckily the dr. decided to follow-up on the chest pain complaint and the pneumonia was eventually discovered. I was originally misdiagnosed as having a pulmonary embolism. It was the 3rd day of the disease, and I was in severe respiratory distress when the CT angiogram was taken and the pneumonia discovered. That's another problem with chronic diseases like ours, it gets so difficult for the doctors to figure out what is causing what. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 > To end up with an infection- pneumonia or sinus to uti-- you just have to > learn to tune in to your body- and listen to the signals it sends out. If you > catch them early- for me it's been easy to handle. Not fun, but easy. Sometimes tuning in isn't enough. I was a bit short of breath climbing stairs one day and literally unable to breath the next. Hit me in 24 hours. By 36 hours I was in intensive care. Turned out to be a rare herpes simplex 1 pneumonia that only immune-suppressed patients get. No warning. Just really sick. I have to say that remicade has made my life so much more livable, even with setbacks like this one. I am no longer crippled with intense foot and leg pain, my facial pain is gone. I used to have to take 3 anti-seizure medications to control that pain. So I wouldn't stop taking remicade. Just be aware that we are so vulnerable to other health issues when we take these. What seems like a no-big-deal symptom may be very serious. When I went to the ER the second day I was sick I didn't even realize my chest pain was serious. I was complaining about a fever and mouth sores! Luckily the dr. decided to follow-up on the chest pain complaint and the pneumonia was eventually discovered. I was originally misdiagnosed as having a pulmonary embolism. It was the 3rd day of the disease, and I was in severe respiratory distress when the CT angiogram was taken and the pneumonia discovered. That's another problem with chronic diseases like ours, it gets so difficult for the doctors to figure out what is causing what. Quote Link to comment Share on other sites More sharing options...
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