Shrinking Lung

[Sandra]

Hi everyone, hope all is at it's best with you, I am posting about a new issue, well not new for me but finally after a year or so new to my dr's 
I have been having some trouble with breathing, it's just breaathing not cold or pnumonia or anything. It feels like i can't get enough air into my lungs and I feel very winded and things are tight in there and often painful in my chest. One test a while ago showed my diaphram was not right but then more tests revealed that was not a big deal.
Since however my respirologist has been really digging into my trouble and last I saw him he is concerned about the muscles around my lungs not performing correctly. He told me it was a concern as this problem and refered to as "shrinking lung".
I have also recently and finally and about time  been diagnosed with lupus. From wht I have read shrinking lung is associated with advanced SLE, lupus. Go figure!
Can't blame anybody though as my body seems to have left a trail of completely broken or at least confused dr's to the point of them making it clear they are "not interested" (more like can't)  in helping me.
The doctor's that I do have are the good ones and will be with me to the end I suppose.
I am unsure other than (more) sterioids what they can do about this problem.
Anybody here been diagnosed with lung involvement in this way? Any info appreciated.
Sandra

[loulou]

hi sandra

Sorry to read of your latest diagnoses, with a name to what your sufferering will hopefully bring meds to help.

I have not heard of that before so i cant really help - but someone here will be able to give you more advice and support -

I wish the best and the docs are on the ball for you. Keep us posted.

THinking of you
Take care
loulou

[Scottietottie]

Hi Sandra 

I'm truly sorry to hear about the recent turn in events. I don't know anything about shrinking lung but it must be pretty scary not getting enough breath.

Is there any info in any of the lupus forums about how 'shrinking lung' is dealt with? I'm sorry I'm of no help at all. I'll go google it and try to post some findings later.

Take care - Scottie 

[Chickpea]

Hi Sandra

I'm truly sorry to hear that you've got this problem, although it's a big plus that you've got some good doctors.  Finally!

How are you feeling about the Lupus diagnosis?  Are you finding Lupus web sites useful? 

Thinking of you - Chickpea

[Sandra]

Well it's kind of a strange reaction because as I mentioned I have known this for a long time there were just to many similarities. The arthritic pain without the arthritis and the swelling/edema and the sun reactions and breathing problems without acute illness. But when I finally read the referal from my rheumy to the surgeon re my gallbladder that said please see this patient with lupus and sjogren's..... it was an eye opener.
Then the next day the respirologist laid it on me again regarding the lung involvement and that really did and does kind of scare me. My breathing is painful, difficult and short when I am flaring.
I read a little on the lupus site but didn't particularly care for what I read so I figure i will get the scoop the end of June when I see my rhuemy. No point scaring myself to death when I have no way of knowing my exact perdiciment.
My bottom line is that I am greatful for what ever life I have had and what ever life I am going to have. It was a beautiful day today and I have a big old apple tree in my front yard, infact I used to climb in it as a kid, well it's in full bloom today apple blossoms everywhere and the scent permiating the air on my front porch. I belive i will go there now to have a cup of tea and listen to the neighborhood children play as the sun goes down. Thanks for posting, Sandra

[Dolly Dimples]

  Well Sandra, that's a lovely attitude you have in taken to your problem..

You are so right.... no point in worrying until you get to know if there is something to worry about !  not so easy I'd imagine,

I picture you sitting there at sunset with lovely apple blossom wafting over you... lovely!  It's not yet that good here in the UK to sit out at sunset!!

        I just want to say that I sincerely pray that you find out soon what exactly the problem is and that God willing you will be well again soon.