Author Topic: Struggling to Breathe - Sjs in the Lungs  (Read 17497 times)

irish

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #30 on: June 10, 2011, 09:45:41 PM »
Daisy, Thank you again for having Mary post on your condition. I hope that things are starting to level off now. No wonder you were having problems breathing.

Please know that I am praying for you. Irish ;D

Budgie

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #31 on: June 11, 2011, 04:41:58 AM »
So glad they've not only found the cause, Daisy, but have an effective treatment for it.  I was worried that it might be premanent lung damage. 

Hats off to you for putting up with a collapsed lung for as long as you did.  I've had a collapsed lung and it is incredibly painful.  But the good news from my respiratory specialist is that the scar tissure that forms around the hole where the chest tube was actually attaches the lung to the lung wall and makes another collapse of that lung most unlikely to happen.

The only other advice I have (which I offer with all due respect because you have been so much sicker than I've ever been) is that after a bad pneumothorax the body tends to breath as lightly as possible. Probably something to do with it having learnt the hard way that breathing causing immense pain.  I put at least some of my ongoing respiratory problems down to taking the easy way out and avoiding deep breathing.  If I had my time again I would get some physiotherapy after my pneumothorax to learn how to breathe properly again.  All the best.

Budgie

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #32 on: June 11, 2011, 04:55:26 AM »
Sorry for double posting but I've just had another thought.  I'm always interested in the relationship between respiratory problems and Sjogren's because that's where my problems first started.  I have read that us folk with Sjogren's have more nodules in the lungs than those without Sjogren's.  If a nodule bursts it can cause a collapsed lung. 

The other thing I though of which I haven't thought of in years, is that my respiratory specialist at the time (long before I'd been diagnosed with Sjogren's) told me that my spontanious pneumothorax had been caused by a burst cyst which was in my lungs as a result of a congenital problem.  Congenital of course means since birth but my mother who tends to get words wrong, went and told all her friends that my collapsed lung had been caused by a genital problem.  Thank goodness I live one and a half hours drive from where she does!  ;D

Daisy1234

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #33 on: June 11, 2011, 12:08:23 PM »
Hi again, this is Mary once more for my sister Daisy.

Daisy seems to be doing quite well right now, still at the hospital and on IVs and pain meds and wants everyone to know that things have stabilized and that she is responding to the large 100mg doses of prednisone.  The whole family feels so much better now, as Daisy is not one to do alot of complaining so when she says something is very wrong we all get quite nervous.

I'm printing out all of your responses to give to Daisy when I see her later today.  Her respirologist has been keeping a very close eye on her and her doctors are hoping she can return home by Wednesday afternoon if all continues as expected.

She asked me to tell you all that she appreciates being part of this forum very much and has many kind words to say about all of you.

Thanking you,
Mary

newhorizons

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #34 on: June 11, 2011, 12:52:06 PM »
Daisy, Sending you best wishes for a speedy recovery!   :)  I spent a couple years on oxygen after a lung issue 5 years ago... Go, Daisy, you can do it; I did... go girl! :-*

You say the kindness things on your post and am looking forward to seeing your name in the signature area soon!!!! :D

Mary,Mary, Oh, to have a sister... I'm 68 with two big brothers, 73 and 75. ;)   LOL, Joy

susanep

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #35 on: June 11, 2011, 01:06:13 PM »
Mary thank you for letting everyone know the latest. I am so glad to hear that Daisy is getting better. I am glad she is still getting pain meds to feel better also. I am so sorry to hear all you have had to go through Daisy. I have been praying for you.

susanep  :)
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Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

susan

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #36 on: June 11, 2011, 03:47:48 PM »
Daisy,
Happy to have an update---sounds as if you are more comfortable.
Thinking of you.

seren

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #37 on: June 11, 2011, 04:08:15 PM »
Aw Daisy...Bless your heart,

I am so glad to hear that your doing better.  :)  You are in my prayers and I pray that the Lord will Heal you Bless you & Comfort you...please TRUST in Him as hard as it must be for you right now!

I am thinking of you and just want to encourage you that miracles do happen and I am praying for one for YOU! x

Love
Paula  :-*

ohiolady

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #38 on: June 11, 2011, 05:25:22 PM »
Daisy,

I am so glad to read Mary's response.  I know you are so grateful to be feeling better and feel that you are responding to the treatment.  We will look forward to hearing more good news and to hear you've made it back home.

Sending a big hug.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

irish

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #39 on: June 11, 2011, 08:27:14 PM »
Hang in there Daisy cause with prayer and gumption anything is possible. Irish ;D

buddybelle

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #40 on: June 13, 2011, 02:22:45 PM »
Daisy,
I am glad that you are feeling better. Irish had made a suggestion about high dose steroids. I am glad to see that you are getting them now. I have experience with receiving 1000 mg of IV steroids for five days to treat MS exacerbations. They are useful in stopping the autoimmune response.

My prayers are with you,
Buddybelle

Also, Budgie mentioned having lung nodules that led to a lung collapse. I am interested in learning more. I had an xray that showed 3 nodular densities on my lungs. My PCP eventually said she thinks they are mucus plugs, common in SJS patients. I am interested in learning more about what the nodules are and how they cause lung collapse.

One and only

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #41 on: June 13, 2011, 02:54:56 PM »
If the lung nodules are calcified,, there prob from past infections,, I was (told), that the lung nodules I have are from Histoplasmosis exposure,, I guess you can tell just from looking at a CT scan,, but hope your home soon,, and feeling better,, not getting enough air sucks,, No pun intended,,

Bucky

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #42 on: June 14, 2011, 05:32:06 AM »
Daisy - I'm sorry you have had such struggles with your breathing.  I had read the beginning of this thread last week and hadn't kept up with it until I checked it today.  Sorry. 

I'm sorry you ended up in the hospital, but glad they have helped your lung and with the meds, you are starting to feel better.  May you continue to improve day-by-day so you can return home.

Yesterday was your birthday - what a way to spend it - in the hospital.   :(  I hope once you are feeling better that your husband will still take you out to that fancy restaurant and then to the casino as was planned earlier.

Hoping that you get to go home soon.  Take care and get well!

Hugs,
Bucky

P.S.   Mary - thank you for updating us on Daisy's condition. 
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

ohiolady

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #43 on: June 14, 2011, 06:57:17 AM »
Daisy,

Happy Belated Birthday!!!!   As Bucky said, I'm hoping you will be able to celebrate soon.  Wishing you better days ahead.

Hugs,

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

shevonne

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #44 on: June 14, 2011, 03:53:57 PM »
Happy Belated Birthday!  Hope you get better soon and lots of hugs and prayers for you!