Posted 9/24/2007 10:41 AM (GMT -6)
Hi Pat - I don't know if you recall, but I recently went through all that myself. Sounds almost identical. My GFR had even declined to 53 and bad edema at times. Turns out it was okay but I will need to be monitored from here on out. It was a relief to see a nephrologist. I do not have lupus nephritis at this point and it was wonderful news as I too was very worried. Nephritis and glumeronephritis are companions to our disease, so it needs to be checked out and kept an eye on. It may take a while to get an appointment, so I would get on that one soon. If nothing else, it is worth the peace of mind.

I wish you the best and hope all turns out well - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 

Posted 9/24/2007 4:50 PM (GMT -6)
Thanks Des and Kris. I know you've been having a rough time Des, and and I hope you're feeling better. Kris, thanks for the information and i'll take your advice. I'll let you all know what I find out tomorrow. I just learned that my chest x-ray was normal, which is great news. Thank you both for thinking of me.

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, 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

Posted 9/25/2007 9:26 AM (GMT -6)
Pat,

I just wanted to let you know I am thinking of you today and am praying that your rheumy can get to the bottom of things and help you. I am also hoping that the symptoms you are having aren't related to kidney problems or anything else that is serious. Let us know how things go when you are feeling up to it.


Love,
Hippi
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.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


Posted 9/25/2007 4:12 PM (GMT -6)
Prayers for you Pat . . . I hope things go/went well . . . give us an update when you can.

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

Posted 9/25/2007 6:12 PM (GMT -6)
Thanks guys. My creatine and bun levels are still high but my rheumy isn't concerned because they haven't worsened in the past 2 months. She is concerned about my heart, however, and ordered an echo to be done this Friday. Something about the P2 being elevated. The way she described it to me is that the second beat is louder than the first and that can indicate a problem. She also wants the cardiologist to measure my PA presssure. I don't know much about heart disease other than the fact that both my parents died from it last year. The good news is that my father had a bypass when he was my age and lived till he was 82. I'm not going to worry about this until I get the results of the echo and have a chance to speak with my cardiologist. If any of you can shed any light on this, please let me know.

My rheumy didn't want to add or change any meds till we get the results of the echo back. She also told me not to taper my pred. any more.

My cardiologist and were great friends in college and how strange that now he has helped me bury both of my parents and is going to be treating me. Who would have thought life could fly by so fast. It's a great reminder that we must enjoy every single day to it's fullest.

My grandkids are on their way over and are spending the night so I'll probably not be posting anymore till tomorrow. Hope everyone here is having a good day.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, 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

Posted 9/25/2007 6:20 PM (GMT -6)
Patty . . enjoy those grands!!! What a blast . . . I dashed out yesterday evening to catch a sunset and picked up the grands on the way . . . no sunset to be seen, but we had a blast at the park. There is a slide built into the slope of a hillside and even I can get on it . . . I shrieked with delight as I sat on my waxed paper and flew down the slide. The girls were screaming and laughing "Go Nanny!!!" We attracted a crowd and handed out waxed paper to each . . . a memorable moment and we really spent less than an hour at the park. I was pooped but I am still wearing that smile!!

I'm SO sorry that you are now having to worry about your heart . . . You have such a calm attitude. *phew* I can't wait till you get all your test results. I also sorry to learn that you lost BOTH parents so close together. I bet the second to go was really missing the first . . . What a stressful year Patty!!!

BTW . . . there have been several more donations at my son's Lupus Marathon website!! Its less than two weeks away now!!! Wooo hoooo . . .

I'll be watching this topic to see how things go for you!!

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

Posted 9/25/2007 11:29 PM (GMT -6)

I've been to Dr. Albert twice, and I am so happy with her! Just wanted to let you know I'm thinking of you and praying for the best!

 

Heather

Posted 9/26/2007 2:17 AM (GMT -6)
Rosie, I saw that your son has raised more $! Good for him. I forgot, when is the marathon? It sounds like you and your grandkids had a great time at the park. How old are they? Ours are 6 & 8 year old girls. Our favorite pastime is reading. We're into a series by Phyllis Reynolds Nalor and finished "Girls Rule" tonight and started "A Spy Among the Girls" in which one of the girls, a 10 year old, falls in love. My granddaughters were laughing hysterically at that and we can't wait to get together and read some more.

Heather, I'm so happy that you like Dr. Albert. She's pretty smart....not a great talker, but I have a lot of confidence in her. I was actually relieved when she told me I might have a problem with my heart because I had plugged my symptoms into a medical website and it came up with heart failure. I don't think it's actually heart failure, but it's something to do with my heart or I wouldn't be so out of breath. Anyway, I'm glad she's so thorough.

I tell myself I'm not worried, and I act like I'm not worried, but I can't sleep tonight, so who knows. Maybe it's time to plan another vacation. :)

Anyway, thanks for thinking of me. Hope you are doing well since you started seeing her. I remember that you were having trouble with plaquenil. Has that gotten better?

Night night for now.

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, 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

Posted 9/26/2007 12:02 PM (GMT -6)
Pat. Hate to do the me too thing again. But I was going through heart problems at the time as the kidneys. I wonder if the heart was causing the kidney function problem. Mitral valve prolapse and sclerosis were the culprits to my breathing and the murmur problems. It was scary in the heat. Ace Inhibitor/Beta Blocker cured it though and heart/kidneys are doing pretty good now. Hope it is something easy to treat. From what I read the heart can cause kidney problems and the kidneys can cause heart problems. Guess they are linked somehow.

Hopefully they will get to the bottom of this soon for you. Funny how the little problems can add up at times. Don't know when to be worried and when not to. Doesn't sound like it is stopping you much either way. Good for you! No reason not to enjoy the little ones. I'm sure it will all work out in the end. Best wishes - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 

Posted 9/26/2007 12:38 PM (GMT -6)

Rosie, I saw that your son has raised more $! Good for him.  Thanks . . . its fun watching the total go up!!!!   getting so exciting . .  there is a link on the Firstgiving page where you can get up to the minute reports on his progress the day of the race!!!  So I signed up for the progress updates.  If anyone wants the link, please email me.  

I forgot, when is the marathon? Just a a week and a half. . .  Sunday, October 7. 

It sounds like you and your grandkids had a great time at the park. How old are they? YES! one of those little slices of life that makes great memories.   Justine is 10 and Libby is 8. 

Ours are 6 & 8 year old girls. Our favorite pastime is reading. We're into a series by Phyllis Reynolds Nalor and finished "Girls Rule" tonight and started "A Spy Among the Girls" in which one of the girls, a 10 year old, falls in love. My granddaughters were laughing hysterically at that and we can't wait to get together and read some more.  Oh. . . yours are very close in age to mine . . . what a fun age to interact with them!!   Your story time is a great idea.  My Justine is an avid reader and she carries a library book at all times.  She reads in the car and any odd moment when things are "boring".   Maybe all three of us can take turns reading the story!!  I can't wait to try that!!

I tell myself I'm not worried, and I act like I'm not worried, but I can't sleep tonight, so who knows. Maybe it's time to plan another vacation. :)  Sounds very normal to me . . . I don't know how you could "not" worry about something so potentially serious.  But you have a great attitude about it.  I hope you sleep soundly tonight . . . I try the alphabet game when I can't get my mind off of a scary topic . . . Start with A and think of a word that begins with A that you are thankful for.  Usually by the time I get to S, T, U, I'm getting groggy and I just fall asleep. 

Keep us posted Patty!!

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

Posted 9/26/2007 1:25 PM (GMT -6)
That's a good idea Rosie. The reason I'm trying not to worry is that I've always been such a worrier and these little scares usually don't add up to anything. i'm tired of worrying and tired of feeling bad.

Kris, your post made me feel so much better. My rheumy told me there is a med for what she thinks I have and I'm glad your condition was taken care of with a med. Fortunately, my kidneys are fine.

This has been a good wake-up call for me because I need to get more exercise and work through my fatigue. I got a good start with that this morning.

By the way, it turns out that she hasn't diagnosed me with RA. i must have misunderstood her but had a conversation about this with my PCP. Isn't that great!

Have a great day.
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, 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

Posted 9/27/2007 10:49 PM (GMT -6)
Hi, Patty. Sorry I'm a little late getting in on this. I love your attitude...just keep trying to work through this one step at a time. That worry can really cause more problems to add up. It's not healthy for us at all. I do hope your doc is thorough with you and can get whatever the problem is under control for you quickly. Take care of yourself and keep us updated,
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

Posted 9/28/2007 12:27 AM (GMT -6)
Hi Patty, I have had some simalair problem with my breathing during times when I have edema. I was Dx's with congestive heart failure. which actually means fluid building up around the sack of your lung and kidneys. They put me on lasix and I peed my brains out that in turn go rid of my CFH. I hope you get some answers from your doctor. Try to keep a good attitude and tell them to give you lasix and see if it helps. You might want to take your weight on your scales a couple of times a day and see if there is a big increase in weight gain. If there is it could be CHF and you will need to be on something to remove the fluids. I'm sorry yu are not feeling well. I know the breathing can reall be trying and a little scarey.
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
 
 
 

Posted 9/28/2007 6:28 AM (GMT -6)
Hey Pat:

Just wanted to say I hope you're feeling ok today and to let you know I said a prayer for you today. Glad to hear the kidneys are work okay, but what a bummer about your heart. Try not to get to worried over this until you've had all your tests and the doctors read them and give you the results.

Just wanted you to know I was thinking about you a lot and just wanted you to know that I'm pulling for you. Enjoy your time with your granddaughters. Which I know you will. You take care and let us know when you get the results.

Love ya,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Posted 9/28/2007 8:36 AM (GMT -6)
Pat, I'm also thinking about you today and praying that your echo will show that your heart is just fine. I hope you get your results today so you don't have to wonder and worry over the weekend. I agree with the others that your attitude through all of this has been amazing.

Lots of of love,
hippi
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.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums


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