Author Topic: Struggling to Breathe - Sjs in the Lungs  (Read 18749 times)

susan

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #15 on: June 07, 2011, 02:22:54 PM »
I am so sorry that your Sjogrens has impacted your lungs so severely! And equally distressed to hear of the delay in a proper diagnosis.
Frustrating that in coping with such serious medical problems you are forced to deal with the human error factor, too. Guess it is always present, but in your case the results have affected you in a big way.
While you wait for your prednisone dose to kick in, or perhaps to seek yet another opinion (I know you must be so tired of this), I wondered about the idea of palliative care in addition to your aggressive treatment plan.
A long-time friend of mine recently had a successful kidney transplant, and during the time he was in renal failure, and undergoing dialysis, he did have a consultation with a palliative care specialist. He did NOT approach it as a "last-ditch" effort, but as a comfort measure to help him conserve both emotional and physical energy for the long-term journey to a better state of health. He found it helpful.
I understand, I think, your feeling of being a burden. However, I am guessing that is not the case----your husband sounds loving and caring, and taking care of our loved ones (even though difficult) is a privelege. I'll bet he sees it that way.
I will close by saying that I admire your courage, and equanimity in the face of this difficulty.
I will be thinking of you, and praying for your health to improve!

Daisy1234

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #16 on: June 08, 2011, 04:14:31 AM »
Thank you Shevonne and Susan. 

I appreciate your kindness Shevonne and Susan thank you for that suggestion, as I hadn't considered it before.

I had a very bad night against last night and am also having a pretty rough morning so far.  Thinking at this point a trip to the ER might be in order as my chest is looking a little caved in on one side this morning and the chest pain is quite intense.

Will let everyone know what's going on when I get back.  Just waiting for my husband to come back home to take me to the hospital.

Hugs,
Daisy

Budgie

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #17 on: June 08, 2011, 04:48:58 AM »
Daisy, oh my goodness.  I might just have been feeling a touch sorry for myself lately because I have a few respiratory issues but nothing like yours.  So thank you for putting my perspective right back where it should be.  Fingers, toes and eyes all crossed that everything goes well for you at the ER and they find some effective treatment to get that oxygen into your poor lungs and give you some relief. 

irish

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #18 on: June 08, 2011, 12:04:43 PM »
Daisy, I am going to suggest something to you that may just freak you out. Do not panic.

People who have COPD are often put on low dose morphine to help with their breathing. When you are having pain and just generally uncomfortable the breathing becomes more labored. Then add in the lung stuff and it is the perfect storm for a stressed out, painful experience.

A low dose of morphine can relax a person because of the pain relief and also help the chest muscles to relax which in turn helps make the breathing a little easier. It is really worth a shot cause when you don't sleep you just get more overwhelmed phycially and emotionally. Once the steroids kick in you can get rid of the morphine. Also, be aware that the high dose steroids can just make sleeping impossible.

You may have a whole combination of stuff going on. High dose steroids are necessary at times but they can cause a person to just get "wild" and uneasy. Generally people on high dose steroids need something for sleep and in your case something for pain. You will probably have better days and nights with pain relief. Good luck and keep us updated. Irish

One and only

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #19 on: June 08, 2011, 12:16:17 PM »
Daisy,, hope you are feeling a bit better,, a little over a year ago I ws having some chest pain and troubling breathing,, my PCP sent me for a chest CT,, showed a collasped lower right lung,, what I got in the way of treatment was a thing in teh mail,, yep,, in the mail,, some kind of breathing thing that had a plastic bubble in it,, was told to breath in and out on that a few times a day,, I trashed the dam thing,, modern medicine for ya, they should have just sent some chicken bones and a book of incantations,

ohiolady

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #20 on: June 08, 2011, 12:21:39 PM »
Daisy,

Will be waiting to see what you found out at ER.  I sure hope you are okay.

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   
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LeoLady

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #21 on: June 09, 2011, 03:10:50 AM »
Daisy:

Sending you hugs and prayers.  Update us soon if you can.

LeoLady  (Melinda)

Daisy1234

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #22 on: June 10, 2011, 07:15:41 AM »
Hi I'm posting this for my sister Daisy who asked me to as she is still in hospital.  Daisy has a collapsed lung and has had a tube inserted into her chest which has allowed them to reinflate it.  Tube is supposed to come out sometime today.  She seems to be much more comfortable now and is receiving an IV with pain medication.  Her 02 level was very low but has now come up quite a bit.  The doctors are saying that she is expected to come home sometime next week.  She says Hi to everyone and thanks you all for your suggestions and kindness.

Mary

Scottietottie

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #23 on: June 10, 2011, 07:57:50 AM »
Hi Mary  :)

Thanks a lot for the update.

Please tell Daisy we are thinking about her. I hope things go as planned and that she gets home soon.

Take care - Scottie  :)
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Carebear

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #24 on: June 10, 2011, 08:19:04 AM »
Hi Mary,

Please tell Daisy I'm thinking of her as well. 
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

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One and only

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #25 on: June 10, 2011, 08:59:07 AM »
What a shame,, last week it was,, lets try some steroids, suffer some more,, and then end up with a tube in your lung trying to reinflate it,, a tech fudging teh numbers to make them (right),, medicine at its best,, and some of us wonder why if theres a God whe he doesnt put a pox on some of these morons,

Kerrikins

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #26 on: June 10, 2011, 09:05:03 AM »
You are in my prayers Daisy, I hope you feel better very soon. ((hugs))

Kerrikins

olmphoto2

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #27 on: June 10, 2011, 09:16:38 AM »
Prayers going your way also Daisy...and for all who are particualry suffering right now.

You are in my prayers Daisy, I hope you feel better very soon. ((hugs))

Kerrikins
Mary Ann in Wisconsin

"A man will be imprisoned in a room with a door that is unlocked and opens inwards as long as it does not occur to him to pull rather than push." 
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lindaneall

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #28 on: June 10, 2011, 04:10:31 PM »
Daisy, I am so sorry you are going through so much.  My thoughts and prayers are with you.  I hope you feel better so

ohiolady

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #29 on: June 10, 2011, 06:30:22 PM »
Daisy,

Thanks for having Mary give us an update.  I've been thinking of you and so glad you are doing some better.  Will continue to keep you in my thoughts and prayers.

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