Got a pulmonology appt next month

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okie
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Date Joined Dec 2006
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   Posted 10/3/2007 10:19 PM (GMT -7)   
My doctors office called today. She has me scheduled with a pulmonologist for the 7th of nov. Somtime between now and than I have to have another lung function test done. Man I hate those things. Especially with the problems I have with the breathing already. So my rheumy appt is next week. I'm kind of going through a hope that I know I shouldn't get to hopful about. If it's COPD there is a chance of a transplant but if it's lupus lung it knocks me off the list. However if it's COPD there is no cure except possible transplant.  but if it's Lupus lung there is a chance they can help me and I can get off this breathing equipment. However I have heard some of the good stories here about your lung problems and successes and bad stories here about the downfalls of trying to heal the lungs. I guess I am just daring to dream that there is a chance that I can live without this oxygen all the time. It's terrible. I have to be so care if I go to somone house that they don't trip over more cordes so I lug a small tank with me instead of the big one. Than I have to make sure I have enough. and sleeping well there is a chore. If I roll around in bed to much the hose gets hung up in the blankets or wrapped around my legs. thank it gets tight and pulls against my face and hurts my ears. I can't even go camping anymore and it was one of the most enjoyable things I ever did. I want my lungs back! and I'm agry that the doctor just said I had asthma for 6 years just to find out I never had it. All this time wasted. They could have been doing somthing. It's my own fault for putting so much faith in my doctor. Now it's hard to beleive what any of them say. I want a 3rd 4th and 5th opinion before I beleive anything anymore.
ok well I didn't mean to rant but I guess I did anyway.
ahhhhhhhhhh I feel better now. Maybe I can get some sleep.
hopping down from my soapbox
love
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
 
 
 


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 10/3/2007 11:34 PM (GMT -7)   
(((((Carol))))) your lung problems really suck. I can't imagine anything worse than not being able to breath. I've been huffing and puffing lately and it's driving me crazy, and I don't even have a pulmonary disease so I can't imagine what it would be like to have lung problems as severe as yours. I'm sorry you don't get more support because you really do need it. What I love about you is that no matter how sick you are you still manage somehow to keep your sense of humor.

November seems like so far away but it will be here before you know it. My next rheumy's appointment is also next week so let's be sure to compare notes.

Thinking of you,

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


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/4/2007 4:08 AM (GMT -7)   
Oh Carol . . . a whole month! While you have breathing issues?????

I'm so glad you explained all the issues with the oxygen . . . I just really didn't know what a huge pain that is. I knew it was a pain, but WOW do I take lots of thins for granted . . . Coming here always makes me appreciate everything that DOES work right in my body.

I pray that this new doc will get to the bottom of things fast and be able to help you sort it all out and make a treatment plan that heals you. I hope he is a caring, intelligent Dr. who you can trust right away.

Keep us posted Pat and I'm sending you a whole pot of tea!!

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


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 10/4/2007 6:20 AM (GMT -7)   
Carol, I wish you didn't have to wait so long to see the pulminologist. I think it's perfectly okay to have hope that somehow there will be a way to improve your lung function without a transplant. I am also hoping the new rheumy is a wonderful doc who will also help you determine if the lung problems are related to lupus.

I had the same experience as Rosie when I read your post. Even though I feel sick a lot, I have a lot to be thankful for. I was having my own little pitty party yesterday and this morning and then I thought about you with your COPD and Barbara Lee with so many very serious issues and others here who have major organ involvement and I realized that a lot of the seriously ill people would be so grateful to have as few problems as I have.

Hang in there Carol. I'm counting down the days with you until your rheumy appointment. I hope you got some sleep.

Love and hugs
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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Co-Moderator: Lupus and CFS Forums



okie
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Date Joined Dec 2006
Total Posts : 2818
   Posted 10/4/2007 5:20 PM (GMT -7)   

Thanks you guys, I really wasn't trying to grumble. It's just hard to be hooked up to a 100ft cord all the time. I am a little concerned right now. I took my last antibiotic yesterday and have felt reasonably well. This afternoon I started feeling pretty congested again. I don't want to call the doctor because she already told me if I get worse I have to go into the hospital. I don't feel bad enough for that but I think it might be good to do another round of antibiotics. It's been really windy today so maybe now that it's calmed down I'll do better. Plus I just can't miss this rheumy appt! As far as being sicker than others. I read some of the stuff people write on here and just cry. I would never want to go through what they go through. Plus those that work and have children plus kids that are sick. It just breaks my heart. Some how we all just seem to get through this one day at a time. Of course the moral support around here is what keeps me going.

love ya all

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
 
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/4/2007 8:26 PM (GMT -7)   
Carol ???? If your anti-b's are done and your going downhill with that issue you REALLY need to talk to your doc first thing in the morning. If another round of anti-b's will help, it must be done immediately to be the most effective. I wonder if the hospital would allow you to slip out with hubby or good friend for an hour or two (if you did end up in the hospital) . . . don't wait to call them sis . . .

Hot tea and blessings to you!!!

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


emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 10/4/2007 10:43 PM (GMT -7)   
Carol,

I"m sorry you're lungs seem to be in such crummy shape right now. But don't ever say it's your fault for having faith in your doctor for 6 years because he told you that you had asthma. What else were you supposed to believe. I can understand your anger at the 6 years gone without treatment, but it was NOT your fault! As far as having trouble believing what docs tell you now, if it is anything drastic a doc tells you, get a 2nd opinion.

Now, since you have finished your round of antibiotics and the dr. told you to call if you didn't feel better why are you going to be a noncompliant patient and not call? Just because they said you MIGHT have to go in the hospital? What if they say you can try another round of antibiotics at home because you are seeing your rheumie and a pulmonologist next month? You don't know what they are going to say. But you do have to call them. You owe that to YOURSELF!!!

My mom has severe COPD. She uses o2 24/7. So I know that it can be a real pain to use. But in my opinion, it's a bigger pain to not be able to breathe.

Please don't take this as a lecture. I just care about you too much. You are such a wonderful, caring, uplifting member of our "loopy" community that I really want you to take care of your self. ((((((hugs))))))

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/5/2007 2:13 AM (GMT -7)   

Dear Rosie and Emmie, Thanks for setting me straight. Your right I need to call her. I am feeling a bit better but as you can tell by the time on here I'm having a rough night sleeping. I don't need to go all weekend in the hopes that I will be ok. I was just afraid of missing up my appt: and I need to see the rheumy so badly. My doctor isn't unreasonable though I'm sure she would only put me in if it is the last resort. I'll call her first thing in the morning thanks.

Oh yeah Emmie, I bet you scare the bageebee's out of yourkds when you yell at them don't ya LOL.

love ya guys

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
 
 
 


CaptSue
Regular Member


Date Joined Jan 2007
Total Posts : 279
   Posted 10/5/2007 3:40 AM (GMT -7)   
Carol,

Big hugs coming attcha. Sorry I have not been around much, got overwhelmed.

Hope you have taken Rosies' and Emmies' excellent advice and called your doctor. Let us know how that goes. Good luck and hang in there. So sorry you had to give up the camping. The list of "had to give ups" around here is very long but it does make the things we can do all the more precious.

Stay Strong,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg), Imuran (2X50mg), Prilosec (20mg), WellbutrinXL (150mg)


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/5/2007 3:50 AM (GMT -7)   
Hey Sue, Long time no hear from ya! It's good to see you posting. Yes I am going to call her this morning. I have been gone for 3 weeks so I havn't got caught up with everything. Send me an email when you can and let me in on all the juicey stuff going on in your life!
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
 
 
 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 10/5/2007 9:46 AM (GMT -7)   

Hi Carol!  Did you call your doc?  I sure hope you aren't in the hospital.  I sleep with my CPAP mask strapped on my face all night or I'd be an SOB night and day! Let us know how you're doing. ((Hugs))

Love, Donna


Dx: SLE diagnosed 2005, major depressive disorder, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil, methotrexate, Imuran, prednisone, prozac, celebrex, lisinopril, actos, lipitor, nexeum, seroquel, arthritis tylenol  PRN: ambien, neurontin, promethazine, xanax
supplements: multi vitamin, C, flaxseed oil, calcium/D
             Better living through chemistry :D    Donna
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/5/2007 1:36 PM (GMT -7)   
Hi everyone. yes I did call the doctor this morning. She perscribed another 5 pills. which is 1 per day. So hopfully that will do the job. I need to go in later next week for another chest xray and see where it stands. In the mean time I have my rheumy appt on tuesday. I'm sure he will be able to tell weather or not I still have pnemonia or not.
Well I'm a little tired gonna go for now
love
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
 
 
 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/5/2007 6:20 PM (GMT -7)   
Carol,

I'm so relieved that you called your doctor and that you're going to continue with the antibiotics for a few more days and I know you're so relieved that she didn't put you right in the hospital. I hope, hope, hope that you can sleep tonight! That not being able to sleep (who could guess that I was NOT and English major) is the absolute pits and it just makes you feel worse than you already do.

Get some rest this weekend and enjoy lounging around and watching OU beat Texas. And stay inside! The pollen/mold count is awful.

Take care,

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
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 10/5/2007 9:42 PM (GMT -7)   
Carol,
I just want to give you a big hug for keeping your word and calling the doctor. I'm glad he prescribed some more antibiotics and you can keep your rheumy appointment. Please keep resting. That is soooo good for you. And be sure to tell us how you are doing and how the appointment goes.

xoxo emmie
</FONT>

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 10/6/2007 9:52 AM (GMT -7)   
Hey Patty, when are they playing and on what channel? I wanted to watch the cubbies play the dbacks but but I can't find it anywhere. I know the mold is just aweful with all this rain and stuff. Are you getting any better at all yet?
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
 
 
 


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 10/6/2007 12:07 PM (GMT -7)   
Hi, Carol. Still trying to get caught up here. I hope the additional meds do the trick for you. I'm SO sorry to hear about all the mess you have to endure toting the oxygen around and wrestling with it in the bed. I'm sure that's such a pain. I sure hope you get well enough to avoid the hospital and are able to keep both of your important appts. I'll be praying you well, okay? Please rest and 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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/6/2007 12:21 PM (GMT -7)   
Great Carol!!!! So glad you won't have a gap in the antibiotics AND you'll be able to see your new rheumy. Make sure and start a new topic on that and update us!!

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


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 10/6/2007 12:25 PM (GMT -7)   
Hi Carol
Hope the Rhumty next Tues goes well with you. Hang in there.
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