Sending me to Pulmonologist

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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/27/2007 11:41 AM (GMT -7)   
Hi everyone. I thought I'd share how my day went. My doctor says I have pnemonia AGAIN! I told her I want a lung transplant. She is sending me to a pulmonologist. I had one before I moved here but I never went looking for another one because she was caring for my needs. Anyway she said she beleives I have "lupus lung" and said I am not a candidate for a transplant because it will just attack my new ones too. She did say the only way to tell for sure if it is lupus lung is to do a biopsy so she's going to try to arrange that with the Pul. Dr. I'd rather my lungs would just heal but every time I get sick it hits my lungs and every time it hits my lungs they don't recover without leaving scaring behind. So other than that she said the pain I was havig is torn cartlidge in my back. So I'm on the steroids and percription cough syrup and some antibiotic called AVELOX 400mg. I have never heard of it before. Well that cough syrup is starting to hit me so I guess I'll go lay down for awhile. Oh yeah she did more blood work today.
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
 
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/27/2007 11:59 AM (GMT -7)   
Hi Carol,
 
I'm sorry you're suffering so much with this.  I want you to know you are in my thoughts and prayers.  It sounds like you're going to get some better care now.  Take it easy okay and have a good rest.  Just know that we're all here for you, all the time.
 
Lots of love
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


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/27/2007 1:15 PM (GMT -7)   
Hi Carol:

Oh honey I'm sorry to hear that you're feeling so bad and have pneumonia again. I have issues with my lungs too. I believe your doctor is correct and you'll need a biopsy to tell if it's lupus lung. ((((hugs)))) I know that when my lung was so bad, my rheumy decided to give me the cytoxan infusions plus I took it orally for 9 months prior. I know that Mom46 (babs) did the cytoxan infusions too for her lungs. She didn't have to many side effects from hers and it cleared up her lungs.

As for me we'll you know they think I got my MDS from taking the cytoxan. I can't tell you either way what to do, but I can pray for you and I will. Know that I'm here for you and you're in my thoughts a lot. Keep us posted and let me know if I can do anything for you.

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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/27/2007 3:57 PM (GMT -7)   
Hi Carol,

I'm sorry you are having so much trouble, but glad they are getting a specialist to help you.

Like Barb said she and Babs (Mom46) have done cytoxin for their lung issues and I think there were other things that were tried before that.

I don't know much about lung issues . . . but wanted to send you a hug.

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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/27/2007 4:39 PM (GMT -7)   
A big hug is coming from me too Carol. Wow, you've had pneumonia a bunch of times haven't you. I can't imagine how much suffering you are going through if you're asking for a long transplant. Good luck with your new pulmonologist. Will you have to wait long to get to see him? Now that you're back home, rest like a crazy woman. Its good to have you back but sorry you're so sick.

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


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/27/2007 7:49 PM (GMT -7)   
Hi, Carol. It's great to have you back, but not in the shape you're in. I'm SO sorry you have pneumonia. I haven't had to deal with that one yet, but I know how painful all that I did have to deal with was so I can certainly feel for you. I hate lung pains! I hope you're new Pulmonologist can get you taken care of as quickly as mine did for me last year. The biopsy sounds a little scary to me, but I've never dealt with that either. I have taken the Avelox med. you mentioned though. My pulmonologist was actually the doc who prescribed it for me. It was a replacement for Amoxicillian I was having a negative reaction to. I didn't have any problems with that one. I think it is a little stronger than others, so they've limited prescribing that one so much and have switched around to others. I hope the meds work quickly to get you feeling better. Please rest and take care of yourself. Thinking of you,
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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/27/2007 9:29 PM (GMT -7)   

You guys are all great! I missed ya and I really appreciate and ove every one of you. Thanks for the great welcome home and the information too.

Patty as for about the pnemonia,yes I get it 2 to 3 times a year. I'm actually right now on the border line of hospital or not. Doc saidto go straight in if I get a fever or chills. Heck how can ya tell? I mean just having lupus causes that. But yout also right about feeling bad enough for a transplant. I can swim a quarter of a lap in the pool and walk 20 feet and have to set down for 5 mins. to get my chest to stop hurting and my heart to stop pounding. My brain just wants to do so much more. I guess I tore the cartledge in my ribcage from cough so hard. At least I didn't break a rib this time so that's a possitive. My other pul. told me 2 years ago that  would have to start considering a transplant. So I always had that in the back of my mind. Of course that was BL. (before Lupus)

Barb thanks for sharing. Yes I know that you blood cancer came from the lung treatments and that just scares the hell out of me. I hope you have had a few days of half way decent days since I've been gone. I don't want to jump the gun. Maybe it isn't Lupus Lung. Which I never heard it called that before.That was exactly the way she wrote it on my DX too. You know I was worried about the mass on my kidney which turned out to be a cyst so hey it could be somthing help. But I am feeling rather deflated right now. I've been fighting these lungs for 8 or 9 years now and they just get worse. I would like ore info about the biopsy though and how that all works but I am wondering if maybe they can find out if I have the gene like you do before they try somthing. However I would do just about anything at this point to just feel half way able to breath again. Plus my heart is beginning to be (borderline) because of the pounding it takes from my breathing problems. I just want this over.

Rosie and Ginny, even if you don't know much about lung issues you know about the pain fear and suffering first hand. I really love you guys for keepinng me in your thoughts and prayers. You really life up my spirits. I'm actually a little concerned because of the meds they just put me on because I have a new rheumy the 4th and I would actually rather go there when I didn't have all the antibiotics and stuff in me which will wack out my blood work I imagine and I want him to get the full effects of what is happening. I know the antibiotics and lots of steroids can effect wbc and rbc and of course sed rates. But I guess we will see what happens.

Hey sharen you don't live that far from me maybe if I have this biopsy you can come spend a couple of days. Are you still in texas? I hope you are having some better days. Again I am so sorry you lost you sweet baby dog. I actually started getting the pnemonia since I was about 15 years old. but just in the past 5 years or so I have been on oxygen because my lungs are not capable of sustaining them on their own. I' glad I'm back and love you too.

I'm actually feeling a bit better physically tonight. the drugs the doc put me on really kicked my butt so I wasn't able to function for several hours whih was actually a good thing for my body. I'm gonna at least spend a little time reading posts and trying to catch up. Not to worry if I can't respond I know everyone understands.

God where did my life go? This disease really sucks!

Love and prayers being sent your way from oklahoma to Gods ears.

Love

carol

p.s. if any of this was rambling please consier the source! LOL. I'm ramble when I'm not on drugs.

Love ya all sooooooooooo much!


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 9/27/2007 10:33 PM (GMT -7)   
Hi, Carol. I'm playing a little catch-up late too. You need to rest though. You can play catch-up when you get to feeling better. Until then, you could just post and let us know how you're doing. I would love to be able to visit you, but I live in East TN, not TX (not sure about mix-up?). I would love to get to meet everyone on this forum in person. I think it is just SO neat how we are all communicating from our little part of the world rather it be somewhere here, Canada, or even from the other side of the ocean. You rest up and take care of yourself girl. You can't get down with this kind of sickness before the cold weather starts! Keep us updated, okay?
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


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/27/2007 10:40 PM (GMT -7)   

Hi sharen, I know exactly where it came from. It's called Lupus brain! tongue My 2 grandbabies lie in tennessee too. but up in the far north west. I really want to see them so bad! I too would love to meet everyone but unfortunately I know it would be such a hardship for everyone. I have enough trouble going to the grocery store. I will try to catch up a little at a time though thanks. I just feel a little better right now and gioving back is to everyone that has been supporting me is the only way I can say thank you for all you do. You take it easy too!

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
 
 
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 9/28/2007 7:14 AM (GMT -7)   
Oh Carol, Im so sorry to hear about your pneumonia and all the lung problems you are having. I can't imagine all the emotions you must be going through on top of feeling so sick. Reading your history and what you are going through it makes me worry about my son who get pneumonia about two - three times a year. Everytime he gets a cold it goes right to his chest and lungs. Usually it gets caught in the walking pneumonia stage though so I'm hoping that means he won't have scarring or lung damage, although he gets very short of breath.

Please don't hesitate to go to the hospital. I know its probably the last place you want be, but it sounds like your pneumonia can get really serious to the point where it is dangerous. I really hope the pulminologist can help without anything too invasive or without those really toxic meds.

I wish we weren't all spread out so much so we could help each other out through these things. I'd love to be able to bring you some soup and some good movies and help out with anything you needed. I guess I'll send you some cyber soup and cyber fudgesicles.

Lots 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

 

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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 9/28/2007 12:54 PM (GMT -7)   
Carol - Hate pneumonia. I am so sorry to hear you keep getting it. I had that issue 20 years ago and it started again last year. Creepy stuff. Scars the lungs pretty good. Never heard of Lupus Lung. Does sound right if you get it consistently with your flares. If you find out more information please let us know. Is there anything they can to help the scaring and recooperating process. 20 years ago I had one full lung and 80% of the other full, very scary, couldn't breathe for up to 2 minutes at a time, 20% chance of making it through but here I am. Now I don't even notice it when I get it. Use to not breathing :) Can they start you on oxygen or steroids that will help your lungs function better? I pray a lot when I get it, so I will pray a lot for you. I really hope you get an expert on this and they can manage it for you.

I really think you are a great person and want the best for you. HUGS - 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.  
 
 

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