My echo shows that my heart muscle is strong but that I have leakeage from my valves. I'm not sure what that means but it's mild and I don't have to go back to the cardio for another echo for a year. I'm going to see my rheumy next week to learn more about it. The leakeage was not there the last time I had an echo so I'm curious as to whether or not this was caused by lupus. I also don't know what's causing me to be so short of breath all of a sudden. I hope my rheumy will get to the bottom of my huffing and puffing.
I am elated with the results. I just wish I could get some sleep!
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin
Hi Patty, Hey that is great news about your test results but I have to admit I know little about leaky heart valves. (I leak everywhere else though) LOL. I havn't slept good tonight either. I should have been out cold with all the meds. A friend of mine told me to see her Rheumy down by where you live if this one doesn't work out I might do that. Maybe we can get together. I havn't heard any more about your flooding or saling your house how's that going?
love ya
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
Hey Pat I was wondering if you have ever seen a pulmonologiest? If your rheumy can't help you might try that. With all the rain and mold we had this year it could be that but than again it could be somthing else. Have you tried puttting those filters in your air conditioning that are supposed to really help block out allergens? They cost about 7 dollars a peice but if it helps it would be worth every cent. Did you have a chst x-ray? You could have bronchitis or pneumonia. It's getting close to time to have our annual flu shots as well. If you don't normally get them I would suggest you ask for a pnemonia shot too. I can so sympathize with you and the trying to breath. I hope the doctors can get this squared away with you and that it wasn't or isn't being caused from the lupus.
love ya
carol
God Bless
Carol
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
Oh Pat . . . I'm glad your heart muscle is so healthy . . . but sorry you don't have an explanation for your windedness. Rheumy appt is next week? Good . . . maybe you'll finally get some answers. Carol had a good thought about the pulmanologist too. I hope you went back to bed and crashed!!
Keep us posted!
Blessings!
Keep us posted!
Blessings!
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Psalms 139
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
Pat, I'm so glad that the echo didn't show anything serious - I was really worried about you. I don't know anything about leaky valves, but I'm glad they are following up with you yearly. I really hope your rheumy can help you get to the bottom of your new symptoms. I agree that Carol had a good idea about a pulminologist if your rheumy can't help.
I hope you were able to get some sleep. Thanks for sharing the good news.
Lots of love :)
I hope you were able to get some sleep. Thanks for sharing the good news.
Lots of love :)
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears
Clickable: LUPUS INFORMATION & LUPUS RESOURCES.
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Hey Carol, Rosie, and Hippi, I can always count on you three for encouragement and inspiration.
Carol, Wouldn't it be great to get together! If you decide to come down here and can't get in to see you friend's rheumy, I have a great one. Heather has been seeing her too and really likes her. She's at Mercy which is in way North OKC. I'll find out next week what she thinks about this shortness of breath, which, by the way is better. I've had a flu shot and a chest x-ray (normal). Right after the house flooded I had all our vents ducts cleaned out but the filters are a good idea. I'm having new carpet installed in a couple of weeks and if you've ever had your carpet replaced you know how much dirt and dust is under the pad so that should help clean things up too. If I don't get any worse I'm going to attribute this to all the mold and allergies we've had, as you suggested.
Rosie, I did go back to bed and crash! I slept until 8:30 a.m.
Hippi, you're a sweetie for always being there and worrying about me when you're going through such a rough time yourself.
One of the things I've learned about lupus is that I can't run to the doctor every time I have a new ache or pain because we can't always find out the cause, but I just try my best to see my pcp and my rheumy on a regular basis and take care of myself as best I can.
I hope you all have a good day today and Rosie, I hope you pick some better numbers today. :)
Thanks for being there for me.
Love,
Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin
Carol, Wouldn't it be great to get together! If you decide to come down here and can't get in to see you friend's rheumy, I have a great one. Heather has been seeing her too and really likes her. She's at Mercy which is in way North OKC. I'll find out next week what she thinks about this shortness of breath, which, by the way is better. I've had a flu shot and a chest x-ray (normal). Right after the house flooded I had all our vents ducts cleaned out but the filters are a good idea. I'm having new carpet installed in a couple of weeks and if you've ever had your carpet replaced you know how much dirt and dust is under the pad so that should help clean things up too. If I don't get any worse I'm going to attribute this to all the mold and allergies we've had, as you suggested.
Rosie, I did go back to bed and crash! I slept until 8:30 a.m.
Hippi, you're a sweetie for always being there and worrying about me when you're going through such a rough time yourself.
One of the things I've learned about lupus is that I can't run to the doctor every time I have a new ache or pain because we can't always find out the cause, but I just try my best to see my pcp and my rheumy on a regular basis and take care of myself as best I can.
I hope you all have a good day today and Rosie, I hope you pick some better numbers today. :)
Thanks for being there for me.
Love,
Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin
Pat,
I'm really glad to hear that your echo came out so well. I'm wondering if you have some mitral valve regurgitation (different from mitral valve prolapse). I have it. From what little I have found about it I know it's not serious, but does require an antibiotic before dental work. I think we can also get a little leakage as we age. Like Carol said, it seems as if we just start leaking all over! Please don't be offended; I'm in my 50s and a grandma as well.
Glad you're getting rested up. You've got such a good attitude and always have such good advice for others. I hope you take some of that for yourself and really take care of yourself as best you can!
xoxo emmie
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SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy
I'm really glad to hear that your echo came out so well. I'm wondering if you have some mitral valve regurgitation (different from mitral valve prolapse). I have it. From what little I have found about it I know it's not serious, but does require an antibiotic before dental work. I think we can also get a little leakage as we age. Like Carol said, it seems as if we just start leaking all over! Please don't be offended; I'm in my 50s and a grandma as well.
Glad you're getting rested up. You've got such a good attitude and always have such good advice for others. I hope you take some of that for yourself and really take care of yourself as best you can!
xoxo emmie
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SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy
Hi, Pat. Your echo results sound great, I just hope you can get more (positive-not worrisome) info. from your rheumy on the leakage. Just keep your spirit up and we'll pray for no problems! Take care,
Always looking for the silver lining, Sharen
SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg
Always looking for the silver lining, Sharen
SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg
Hi Pat,
I'm glad your Echo went well but, sorry you have no answers for your SOB. I'm glad you will be seeing the doc again this next week. Have you ever had a heart catherization or a Pulmonary function test, like Carol asked? Please let us know what you find out and rest all you can. You will be in my thoughts and prayers.
Love, Babs
Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
JOB5:18 For he wounds, but he also binds up; he injures, but his hands also heal.
JOB
Hey Patty,
I think I can shed some light on this for you. I have a mildly leaky mitral valve. It is due to a condition that lupus creates (of course, why wouldn't it!), called Libman Sach's Endocarditis. I was diagnosed with it the same time as when I got my lupus diagnoses. I have to get an echo once a year too. It's basically inflammation of the heart valves. So it causes the valves to not close all the way. That is why you get some regurgitation showing up on the echo. As the inflammation in your body goes down, so does the issues with the heart valves.
I"m glad to hear that your echo came back fine! That's great news. I don't get the huffing and puffing, so you might want to let your cardiologist know this.
Hope this helps!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in, to be content. Phillipians 4:11-13
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in, to be content. Phillipians 4:11-13
33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Ginny, Thank you for the information! It always helps to know what's wrong and what's causing it. I'll look this up online and read about it. And I'm glad to have this information before my Thursday appointment with my rheumy. I'll let you know what she has to say.
Emmi, thanks for your kind words. I didn't know you had this too. I hope both you Emmi, and you Ginny haven't had any complications from this.
Sharen, I'm not worried about this and feel confident enough in my rheumy to know that she'll know what I need to do to take care of this.
Babs, I had a pulmonary function test about a year ago and the results were excellent, so I'm pretty confident that this has nothing to do with my lungs. My breathing has improved during the past few days.
I appreciate all of you sweet gals!
Love,
Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin
Emmi, thanks for your kind words. I didn't know you had this too. I hope both you Emmi, and you Ginny haven't had any complications from this.
Sharen, I'm not worried about this and feel confident enough in my rheumy to know that she'll know what I need to do to take care of this.
Babs, I had a pulmonary function test about a year ago and the results were excellent, so I'm pretty confident that this has nothing to do with my lungs. My breathing has improved during the past few days.
I appreciate all of you sweet gals!
Love,
Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin
Hi Patty,
Well, it might not be what you have, but there's a pretty good chance it is. Anything with inflammation, lupus and heart valves tends to be this endocarditis.
You mentioned that you hoped Emmi and I didn't have any complications from this. Well, I did unfortunately. The inflammation caused my valve to start to break off in microscopic pieces. Those little pieces of valve got into my blood stream and ended up in my brain, which caused my stroke. It was those little valve pieces and my antiphospholipid syndrome (APS - thick sticky blood) that caused the stroke. So there is something to talk to your rheumy about. Getting any inflammation down is very important. Do you have APS? Have you ever been tested? A simple blood test will determine if you have APS. I'm on blood thinners for life to keep my blood from clotting so quickly.
So it's good that you're seeing your rheumy soon. I don't want to alarm you or scare you. This occurance isn't common. But worth noting. You just can't be too careful, right? Knowledge is power when it comes to lupus!
You can email me any time if you want to talk about it more. I"m always happy to share more info if you need it okay!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in, to be content. Phillipians 4:11-13
33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Pat,
I don't have what Ginny has; in my case it's because the valve is stiffening due to scleroderma and it doesn't close quite all the way. It can also not close just because of reasons like aging--nothing to be too alarmed about if the "non-closure" isn't too bad. Just get more info from your rheumy or cardiologist--whoever did your test. Glad to hear you PFT was good and that your SOB is easing.
xoxo emmie
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SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy
I don't have what Ginny has; in my case it's because the valve is stiffening due to scleroderma and it doesn't close quite all the way. It can also not close just because of reasons like aging--nothing to be too alarmed about if the "non-closure" isn't too bad. Just get more info from your rheumy or cardiologist--whoever did your test. Glad to hear you PFT was good and that your SOB is easing.
xoxo emmie
</FONT>
SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy