Lung Problems?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

B@peace
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/1/2009 11:58 AM (GMT -7)   
about a year ago I started getting bronchitis chronically.  about 6 months ago I got my first nebulizer.  Now I am being referred to a pulmonologist so they can check for Emphysema and COPD.  Has anyone else experienced this? 

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/2/2009 9:21 AM (GMT -7)   
Hello B,
 
Welcome to the forum. I'm sorry you're dealing with lung problems. Carol (Okie) is our expert on this part of Lupus.  She's dealing with some very difficult issues right now, but hopefully she sees your posting and can offer some encouragement and advice.  She's a darling, and very knowledgeable.
 
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

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/3/2009 1:37 PM (GMT -7)   
Hi B welcome to the group. The first thing I will say is if you smoke stop! I have had a nebulizer for about 10 years now. My dr. though I had asthma for several years and was treating me with asthma meds. He finally sent me to a pulmonologist and I was told pitch the asthma meds it's COPD. So it's good that you are getting checked out as quickly as you are. My internist beleives that I have what they call Lupus lung. My pulm. says the only way to find out is a biopsy. but that I would not survive a biopsy. He wrote a letter to the transplant clinic in oklahoma city. They agreed to do all the testing for a transplant list. I got through several of the tests and then I was supposed to meet the surgeon last thursday and wham I got the flu that settled in my lungs. I havn't been able to breath for a week. I have an appt with my pcp tomorrow morning and I half expect she will want to put me in the hospital since I can't even walk to the bathroom. Plus she put me back on heavy duty antibiotics my second round of them.
Ok I know all this sounds pretty bad but I just want you to know that they are catching yours early. If indeed that is what is wrong. I really wish I had a dr. that was as sharp as yours. Just listen to the pulm. do what they say. You might even want a second opinion. If they say there is no problem I would get another opinion. for sure. Not because I am hoping there is a problem but because frankly You can not live without your lungs! I mean simple things bending over to pick up a puppy, taking out trash, washing a dish, going to the bathroom. If you start to get a cough get to the dr. Every time you get a lung infection you will do irreiversable damage to your lungs. I'm 51 and have been living on oxygen 24/7 since 2003. I wish to God I had been more agressive paid more attention. Asked more questions.
I am so sorry I am not helping you I know. I am just very sick right now and I don' know how to help you. If you want to ask some speciafic questions I can try to answer them. Also Barb is another one on o2 24/7. Plus there are a few others that have COPD here that can be of help. Hopfully you stick around and I get feeling better soon so I can be of a little help anyway.
Take care
carol
 
 CAROL
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/3/2009 1:38 PM (GMT -7)   
and Ginny you are such a sweetie!
love ya gal
carol
 CAROL
Possible scleroderma.  stage 4 COPD, sleep apnea, Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, provigil 200mg spirivia,aciphex,lasix ,pot.chlor.,B12 ,iNDEROL
 
Bear ye one another's burdens
Galatians 6:2 KJV

 
 


conorsmom
Regular Member


Date Joined Feb 2009
Total Posts : 20
   Posted 3/12/2009 11:26 AM (GMT -7)   

Hi! I was diagnosed with lupus pneumonitis back in 2002 after being diagnosed with asthma and respiratory failure. Every cold that my son brings home leads to a hospitalization; last year I was on a vent in ICU for 6 days- no infection, just pneumonitis. This year I was on a vent for 5 days but I had massive pneumonia. And just last month I was in the hospital with bilateral pneumonia in the bases but didn't need to be ventilated.

My pulmonologist isn't sure of the origins of the pneumonitis- I was on methotrexate for years and it can cause pneumonitis. Pneumonitis is diagnosed by bronchoscopy with a biopsy taken. I am very short of breath, but my pulse oximetry levels run 92-95%, which is just above the criteria for home O2. Meanwhile, I can't walk long distances (or short ones) without getting very short of breath, which means no family outings where I may have to walk far. Which I hate because I used to work out 5 days a week and walked everywhere. Now I get short of breath just going up the steps to the second floor of our house.

My pneumonitis always seems to start with asthma symptoms- using my inhaler, then home nebulizers, then ER.

I hope you don't have this rare complication of lupus; it's not anything I would wish on my worst enemy!

Good luck! Sandy


Diagnosed with SLE 1994,Fibromyalgia 1994,Interstitial Cystitis 2000,lupus pneumonitis 2002,peripheral neuropathy 2002,cerebral anoxia 2007,
 
I can do all things through Christ who strenghthens me. (Phil 3:13)
 
 
Go Gators!

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 11, 2016 5:07 AM (GMT -7)
There are a total of 2,736,273 posts in 301,365 threads.
View Active Threads


Who's Online
This forum has 151457 registered members. Please welcome our newest member, jim1909.
147 Guest(s), 3 Registered Member(s) are currently online.  Details
hypoHashimoto, ceecee600, Jozuck12


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer