Had my 2 week out of hospital check up

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okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 12/20/2007 6:43 PM (GMT -7)   
I'm back on antibiotics. I have either another or the same infection in my lungs. I'm so frustrated. I didn't see my reg. pcp she was booked solid so I saw the new doctor in her office.
I've had problems with chest pains and swollowing. He wrote me up to go see some specialist about putting a camera in my esophogus to see if lupus is attacking it some how.
What I want to know is is this normal? When you were going through the DX process did you have doctors wanted you to get checked out for anything and everything? I mean one doctor says I have lupus in my lungs another says I have Primary billiary cirrosis and another tells me i may have lupus attacking my esophogus. and still another one tells me I'm perfectly fine there is nothing wrong with me.
I'm trying to get medicaid to pay for everything my v.a. insurance doesn't cover. So I can't get these tests done until I get that figured out. Even than I don't know if I want to go thru all this trauma on my body biopsies and stuff. anyway I just want to know if you had to go thru all this stuff?
 
thanks in advance
love
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,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
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/20/2007 8:07 PM (GMT -7)   
Hi Carol,
 
I'm so sorry you're dealing with this all over again.  It's not fair and I'm feeling really badly for you right now.  I know how it is to have setbacks in the recovery process from something this traumatic. 
 
I've been through just about every test, procedure, and specialist you can think of.  My doctors did want me checked out by all the specialists, just to make sure everything was working as they should.  It's a tough thing to have to go through the tests, biopsies, etc because it really becomes almost unbearable to go through another test.  I'm finding that this year in particular, has been bad.  I feel that my health issues have become a full time job for me.  All the appointments, blood tests, mini-crisis moments.  It has all added up to a huge amount of energy and mental exhaustion.  So yes, I understand the incredibly frustrating routine of life with lupus.
 
Here's the thing Carol.  If you don't get the biopsy done, you might miss out on an opportunity to truly figure out what is causing these infections.  You get it checked, and then you're done.  Treatment can start and you KNOW what is going on.  This is the second time I'm going to use this phrase in a post tonight.... Short term pain, for the long term gain.  YOu have to do what you have to do. 
 
I've had a trans esophageal scope.  I had to have one after my stroke.  They were looking at my heart through the esophagus!  Neat eh.  It's a fairly simple procedure.  15 minutes for me.  And they knocked me out with a heavy sedative.  I didn't feel a thing, except for a mildly scratchy throat for a day.  But it gave me the info I needed, and the info the doctors needed.  I was okay.
 
How are you tonight?  Are you going back into the hospital?  What about home care?  Please let us know what the next step is for you.  Do you have someone to stay with you?  Big, gentle hugs coming your way sis. 
 
Blessings,
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(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/20/2007 10:18 PM (GMT -7)   

Thank ou Ginny, you always make me feel better. I just feel like every time I come here I'm telling you all that they want to do this test and that test it makes me feel like I'm making it up or somthing.I think to myself you guys must think i'm a hypocondriac. I just can't imagine all these doctors wanting to disect me. I'm sorry you had to go thru all those tests but at least I know it's all part of the process and I am not alone in this.

As for being back in the hospital I can happily say no I am home in my jammies but on lots of antibiotics. The doctor said my lungs don't sound real bad so hopfully this will catch it before it becomes full blown again. One thing did surprise me though he didn't do an xray. They have a machine right there so I think I would have felt better had he done one.

Oh and the lady that was suppposed to come to my house to discuss home health care is off work sick! They don't expect her back until after christmas. I do have some very good friends that want me to move in with them for the winter so they can help take care of me. I am considering it but I really don't want to be a burden and even though we are close the best way to loose a friend is to live with them. So I am torn between what to do.

anyway that's how things stand right now. Thanks again for answering me I really love hearing from you you always give me a different perspective on things.

love ya

carol


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,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
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 12/21/2007 7:32 AM (GMT -7)   
Carol, you really need a break from all of this. That really stinks about your infection and that you can't seem to pull out of the bad illness that put you in the hospital. I haven't been as sick as you are, but when I first got sick, I was sent out to have a lot of tests by different specialists, so I do think it's pretty common and probably even more common the more complicated your case it. By the way...the doc who thought you are perfectly fine should have his license taken away - what a quack!

I understand your hesitation to move in with friends, it has the potential to get complicated. I wish the home health person was able to come in before Christmas - that would make things easier. I wonder why they can't send someone else until she comes back? Nothing is ever simple is it?

You've been on my mind a lot and I've been worried about you ever since you've been in the hospital. Stay in your p.j.'s and rest, rest, rest.

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

 

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PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 12/21/2007 9:38 AM (GMT -7)   
Carol,

I know that you and all of us are ready for you to get some answers and some help. You've been through so much. If you'd consider coming to the City and going to one of the specialists here, I'd be around to help you. I live in North Edmond so am right on your way into town. I could try to help you get in to see one of the best specialists. Please take good care of yourself.

(((((hugs)))))

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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/21/2007 11:53 AM (GMT -7)   
Thanks Patty and and Hippi, I'm sorry you two are going thru so much. This just isn't fair at christmas time. It seems like everyone is getting so sick right now. This weather doesn't know what to do. Today it's suposed to be 62 and tomorrow it's supposed to snow! Hippi I'm glad you got people there to help out and you got your power on. I always worry about the power here because if mine goes out my home oxygen goes out. Than I have to rely on tanks and tanks don't last long plus that sucking noise makes sleeping almost impossible.How was your daughters school thing last night? I hope you didnt over do it.
 
Patty you never know I just might make plans to see ya. I have a friend that wants me to see her rheumy. Do you know a Dr.mcarthur at mcbride clinic? If nothing else maybe we can get together for lunch down there. It would be so cool to meet face to face! Thank you for all your help.
 
you ladies try to be good to yourself
sombody in newkirk oklahoma loves ya!
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,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
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/21/2007 12:26 PM (GMT -7)   
Oh Carol, no!!  We would never think of you as a hypochondriac!  Hypochondriacs are people who don't have anything wrong with them.  You do!! LOL.  Heck, we all do here.  So never, ever think that way.  We all are very concerned for you. 
 
Yeah, I had trouble getting home care as well.  We wanted a nurse to come by every day to check on me while hubby was at work and I was home alone.  We were told it would take a month to set up and that they couldn't even guarantee that!  The system is completely overwhelmed.  No one extra to send out.  So I spent a couple of months having some anxiety every day because I was so afraid I'd have complications and not be able to call 911.  I was really, really sick.  You know what that's like.
 
I'd also have trouble accepting an invitation from friends to stay with them.  I'd be so afraid of being a total burden. And honestly, I don't want them to see how I really am every day.  I'd rather keep my health issues to myself!  So I understand your hesitance in doing that.  Totally understand. Just make sure you have a "life line" just in case!
 
I'm surprised your doctor didn't do a chest xray right then too?  That seems like a no brainer to me.  I'm still in my p.j.'s too Carol. I'm having one of those, "I don't give a rip" kind of days.  LOL. Too much on the calendar, not enough energy.  Stay well my friend!!
 
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(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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