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Sjogrens Topics => Living With Sjogren's => Topic started by: Daisy1234 on June 07, 2011, 06:18:20 AM

Title: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 on June 07, 2011, 06:18:20 AM
Hi everyone:

I have severe Sjs with many extraglandular complications as well as Sarcoidosis, and Malt Lymphoma.  The latest issue is that Sjs has spread into my lungs.  I now have Lymphacitic Follicular Bronchiolitis and advanced Chronic Interstial Pneumonitis thanks to Sjs.

More and more, I am struggling to breathe.  I have never smoked or been exposed to any toxins that I am aware of.  In fact I was a competitive athlete and always took good care of my health.

Last night trying to sleep, I kept waking up every 1/2 hour because I felt like I was suffocating.  I ended up sitting up for the rest of the night trying to get some sleep that way because whenever I lay down, the suffocating pressure would get too much for me again.  This is not the first night this has happened either.

I am under the constant care of a good Respirologist and a good Rheumatologist and they have put me on 100mg of prednisone a day which I started last week and I will be getting Rituxan injections in a few weeks.  I asked my Rheumy for a prognosis on Friday last week, and she got really nervous and a bit evasive when I asked that.  She replied," Well lets cross that bridge when we get to it, and just hope that you respond to the treatment we are prescribing".  I did ask her what other treatments we could look at if the pred and the Rituxan didn't work and she said, she didn't know.

Not a very comforting thought.  Next week I will see my Respirologist again and I will ask the same question.  I have become quite concered that his response will be that this lung issue is terminal.  From what I've read, only a minority of people with this type of lung involvement respond to this type of treatment and it has been confirmed that the major lung scarring I've experienced cannot be reversed.  The long term outlook has been stated on the internet as being anywhere from 6 months to 5 years depending on how fast the disease progresses.

This has been on my mind quite a bit lately.  I'm in my mid-40's now and hate being such a burden on my wonderful husband. 

Daisy
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Joe S. on June 07, 2011, 06:38:35 AM
The only thing that I can suggest is listening to tones and taking supplements.
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: cremer on June 07, 2011, 07:07:53 AM
Can't offer any advice but I can offer a little moral support.

Stick in there Daisey and please don't think of yourself as a burden.
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 on June 07, 2011, 07:10:52 AM
Thank you Joe and Cremer for both of your responses and caring.  Appreciate the kindness!

Daisy
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Shade on June 07, 2011, 07:20:42 AM
Oh Daisy, I am so sorry to hear this.

I am new to Sjs and can't add any medical advice.  

What I do know is attitude can mean a lot.  Understandably, at a time like this it can be difficult to keep a positive attitude, but please try.  Focus on getting better...knowing that you will get better...knowing that you will beat this.

In the short time I been coming to this forum it is apparent how many caring friends you have here.  You are in everyone's thoughts and prayers.  We are all pulling for you.

Please take care of yourself,

Shade
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Kerrikins on June 07, 2011, 08:40:59 AM
I'm so sorry that you are having such a struggle Daisy, I'm praying that you have a positive response to the treatment. ((hugs!))
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: ohiolady on June 07, 2011, 10:15:14 AM
Oh, Daisy, I cannot accept that you won't get better.  I am so very sorry you are going through this and I am POSITIVE you are not a burden to your husband.  I'm sure he cherishes each and every moment.  I am praying this treatment will work for you and stop the damage occurring to your lungs.  I feel so badly you are experiencing this suffocating feeling every night and cannot sleep. 

At times like these, I just wish there was something I could do to help but I hope you know how very much you are thought of by me and your friends here on the board.

Sending you a big hug.

Anna
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: HL in NY on June 07, 2011, 10:27:05 AM
Hey Daisy,

From one MALT girl to another, lots of big hugs.  Have you talked to your doctors about the possiblities of a lung transplant? The one good thing we have going for us is that the anti-rejection drugs would probably help the Sjogrens. I don't know how it would affect your cancer treatment, but it's worth asking about.

Wishing you health,

Heather
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 on June 07, 2011, 10:33:32 AM
Dear Shade, Kerrikins, Heather and Anna:

I am doing my very best to maintain a positive outlook especially on the outside, particularily for my darling husband who is finding my escalating health issues extremely worrisome.  I have been very blessed to have such a special man share my life and am doing my best to live each moment to the fullest for both of our sakes.

All of your kind words are very meaningful and so very supportive.  I hope to be able to talk to my respirologist at my appointment next week about the lung transplant aspect to see if that's feasible.

In any case, it helps me very much to be able to share with others what is going on without having to burden my husband further.  Your caring means such a tremendous amount to me and I am very grateful for it.

Daisy

Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: One and only on June 07, 2011, 10:35:53 AM
and were told this thing isnt fatal,, it might not be,, but who wants to live like this,, I feel for you Daisy,, been down the rituxim road,, for me,, it was heck on earth,, its strong its a big gun and it leaves us open to more infections,, dam if you do dam if you dont type of thing,, hope you find some relief soon
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: anita on June 07, 2011, 12:16:07 PM
Maybe you could get a wedge pillow so you are elevated, making breathing easier.   I use one for my gastroparesis and some diaphragm weakness. Also, are you using O2?  if not, I would talk to him about it to make breathing easier until this is all under better control.

Will be keeping you in my thoughts.
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 on June 07, 2011, 12:27:14 PM
One and only, yes they tell us that Sjs is usually not fatal, but in some cases it can be due to the complications that arise with it.  So sorry that you had a bad time with the Rituxan.

Anita, I do sleep with a wedge pillow for the same reason as you do, gastroparesis.  Have had one for at least 3 years now.  Still not enough, too much pressure on the lungs, sitting up seems to be a better position for me and working on getting used to it.  Only a few more days to see the respirologist, he's away this week or I'd be seeing him sooner.  Yes I'm on humidified O2 but if I wasn't, or didn't have the wedge pillow both of your suggestions would have offered me some relief.

Thank you both for thinking of me.

Daisy
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: irish on June 07, 2011, 12:37:53 PM
Daisy, This is very worrisome to hear. I am so sorry that you are having to deal with this "beast" in such a huge way. It sounds like it just hit you really hard right off the bat.

The one thing I am wondering is how many people have had this same thing over the years but been misdiagnosed for one reason or another. It is just recently that the medical community has found that the sjogrens attacks the lungs in such a vicious manner.

I am wondering if the high dose prednisone has made any difference at all. Seems like you just did start it. I am thinking they want the AID to be calmed down some before they start the Rituxan. I am certainly of mixed emotions as some people complain about this drug big time and others find it to be such a help. I know that my immunologist has thought about putting me on Rituxan but has held off. He said that people has less prone to infections compared to other drugs in the same family. It sure doesn't pay to sit and try to figure it all out cause none of us will.

I will keep you and your hubby in my thoughts and prayers. It is miserable to breathe like this. I wondered if oxygen would give you some relief. How about just sleeping in a recliner. Maybe move a recliner into the bedroom so you are close to your hubby.

You know that all of our here just wish we could make things better for you. Please hang in there cause miracles do happen. Irish ;D
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 on June 07, 2011, 01:30:59 PM
Irish, I've had this condition for at least the past year or maybe even alot longer.  As you so clearly articulated, I've fallen in the group where my lung issues have gone untreated for a while.  It was a full year ago, when I started to complain to my PCP of having frequent chest pains and difficulty breathing and coughing spasms.  In response I was sent for an ECG and echocardiogram to check my heart that showed normal. 

About 9 months ago, still complaining of chest pains and now having some suffocation issues, I was sent by my PCP for a PFT (pulmonary function test) to the technician in the building who does the PFT tests.  The technician must have been improperly trained because she administered the test incorrectly.  (I only learned that when I went to the lung clinic at the Respirologist's office and had the PFT test done correctly.)

Anyway, my PFT results with this tech were showing that I could not inflate my lungs properly but the tech was very distressed by the fact that the results weren't correct so she kept making me repeat the PFT over and over again maybe a dozen times until she got a somewhat "right" result.  I was coughing and gasping the entire time and she was pushing me like a drill sargeant.  For the remainder of the week, my chest hurt even more badly than it had previously.

So because this PFT test was skewed, my PCP never saw all of the results that the tech threw out showing that I was having lung inflation problems as my PCP only was given the test result where things came back almost normal and subsequently, my PCP dismissed any lung involvement at that time.

In January 2011, a CT scan of my abdomen happened to capture some of my lungs and it reported that I had bi-lateral atelectasis (partial collapse of both lungs) and there was a remark that this needed attention.  A later CT scan in March 2011 showed that there was significant atrophied tissue in my lungs.

However, it was only after I pushed my PCP to send me to a respirologist in May 2011 that I had a proper PFT at the Respirologist's office which showed that my lungs were very compromised.  He immediately scheduled me for a bronchoscopy and lung biopsies which have now revealed that the lung issue is chronic and advanced. 

Maybe if it had been caught earlier as you stated, I wouldn't be already in a bad way.  So far the prednisone hasn't made any difference, but it may be too early to tell as I only started on it last Tuesday. 

I appreciate your caring and concern and always your wisdom and sage advice.
Daisy
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: shevonne on June 07, 2011, 01:55:53 PM
Daisy,

I am definitely praying for you and your husband as well!  Try to stay positive!  I wish there was some way I could help you cope with all this!  Please know if you ever need to talk you can send me a private message and we can make contact through other means.
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: susan 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!
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Budgie 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. 
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: irish 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: One and only 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,
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: ohiolady 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: LeoLady on June 09, 2011, 03:10:50 AM
Daisy:

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

LeoLady  (Melinda)
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Scottietottie 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  :)
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Carebear on June 10, 2011, 08:19:04 AM
Hi Mary,

Please tell Daisy I'm thinking of her as well. 
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: One and only 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,
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Kerrikins on June 10, 2011, 09:05:03 AM
You are in my prayers Daisy, I hope you feel better very soon. ((hugs))

Kerrikins
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: olmphoto2 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: lindaneall 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: ohiolady 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: irish 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Budgie 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.
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Budgie 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: newhorizons 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: susanep 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  :)
Still Praying

Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: susan on June 11, 2011, 03:47:48 PM
Daisy,
Happy to have an update---sounds as if you are more comfortable.
Thinking of you.
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: seren 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  :-*
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: ohiolady 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: irish on June 11, 2011, 08:27:14 PM
Hang in there Daisy cause with prayer and gumption anything is possible. Irish ;D
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: buddybelle 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.
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: One and only 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,,
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Bucky 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. 
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: ohiolady 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
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: shevonne on June 14, 2011, 03:53:57 PM
Happy Belated Birthday!  Hope you get better soon and lots of hugs and prayers for you!
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 on June 15, 2011, 01:18:55 PM
Hi Everyone!  I'm back home  hurray!!!!!!

Saw my Respirologist early this afternoon before he discharged me, have some directions to follow at home because he says that I am still pretty sick, but its always so wonderfully nice to be home.  Can breathe again too, well maybe not like a regular person can because I do have Interstial Lung Disease from the Sjogren's getting into my lungs, but am doing a heck of alot better than I was before I went to the hospital and found out that one of my lungs had collapsed  :)   

Thank you one and all for those kind posts, my sister Mary shared them with me while I was recuperating at the hospital and they immediately made me feel better!  Its so truly special to be part of the wonderful family that is the Sjogren's World Forum!

Sending grateful hugs to you all,

Daisy

Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Katybarstool on June 15, 2011, 01:34:13 PM
Welcome home Daisy. It's good to see you back. I've only just seen your message, as I was away last week, but I wanted to wish you all the best.

Kathyx
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: mebog on June 15, 2011, 01:40:34 PM
So happy to hear that you are home.  I don't write much because I'm not good at it.
I was looking for news of you and happy to find out that it is good news.
I have that intersistual lung disease dx first time in 2002.  I been in the hospital about three times a year eversince.However I'm 73 years old and atill upright.  Was only dx with sjogrens in 2010 but I'm sureI had it for a long time
I wish you all the best, I'll be praying for you.
You will be better soon,  mebog
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Carebear on June 15, 2011, 02:26:59 PM
So good to hear from you, Daisy!  And a happy belated birthday to you as well!  ;D
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Bucky on June 15, 2011, 02:36:30 PM
Welcome home Daisy!!   ;D

Be sure and take it easy while you are recuperating from your hospital stay.

There's no place like home . . . . there's no place like home!!

Take care,
Bucky
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: ohiolady on June 15, 2011, 03:56:35 PM
Daisy,

I'm so happy to hear you are home!!!!!!!!!  Please take good care of yourself and keep us posted.  I'm praying your treatment will work and you will see more progress.  YOu have certainly been in my thoughts and all of us here on the board. 

Hugs,

Anna
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: irish on June 15, 2011, 09:03:04 PM
Daisy, So glad to hear that you are home. It is always good to be able to sleep in your own bed. So glad that you got to ER and got help before you really got in trouble. Sure sounds like they loaded you up with meds and you are so much better.

Who would have thunk that you had a collapsed lung. Sjogrens just keeps on giving. Make sure to rest and take it easy so you can enjoy the summer. Irish ;D
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: HL in NY on June 16, 2011, 04:07:32 AM
Daisy! I've been checking this thread everyday. So Happy you're home and feeling better. Hope you continue to improve!

Heather
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Joe S. on June 16, 2011, 04:56:09 AM
I'm glad you are doing better.
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Budgie on June 16, 2011, 05:05:53 AM
Daisy, so pleased to hear you are home.  Hoping you feel much better and continue making a speedy recovery.  Like Irish says, there's nothing like sleeping in your own bed and eating your own food. 
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: hollowoakfarm on June 16, 2011, 01:00:16 PM
I'm very pleased to see you back home.  Being in your own space will do wonders for you!
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Pisces24 on June 16, 2011, 04:10:23 PM
Glad you are home. You feel sooo much better at home in your own bed with your own noises.
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: susan on June 16, 2011, 04:13:28 PM
So happy you are in the comfort of your own home---great accomplishment!!!!!
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: newhorizons on June 16, 2011, 07:17:13 PM
Daisy, Glad to hear you're on the mend... Keep up the g :-*  :-* d work!!!   Joy
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Shade on June 17, 2011, 03:53:58 PM
Hi Daisy, hope you are healing fast.  Being home when you are on the mend is a great thing.  No getting awaken because somebody comes in the room during the middle of the night or early in the morning.  I know your family is so happy that you are home.

Take care of yourself and keep us updated. 

Shade
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Daisy1234 on June 17, 2011, 07:53:31 PM
Hello all of my dear dear ones:   :)

I am feeling better these days and thank you all for your prayers and well-wishes.  How beautiful and kind you have been to me.  My breathing is not nearly as shallow as it was when I came come from the hospital a couple of days ago and there have been little negative side-effects to the high doses of prednisone (100 mg daily) that I am currently on.

Can you imagine, the prednisone has given me a wonderful sense of well-being (emotionally speaking) and I am not suffering from any of the anxiety that normally accompanies this strong drug.  In fact I was smilng so much yesterday that my face muscles started to hurt!!!!     I'm so very very blessed!  I do sleep less these days and more lightly than before, but what the heck, I've been able to spend more time with my family (have been asking myself, why no one is up at 4am in the morning to share a nice family chat with me LOL) and less of it snoozing away.

Life is getting better now and I now have officially named my new stubby oxygen tank after my english bulldog "Little Fatty" (they share similar physical proportions lol) and have her with me all of the time :).   I was even able to speak to my mother on the phone today and with her hearing disability she could understand me for the most part without all of the usual heavy breathing that intereferes with my speech.  That was so very nice!!

Sending all of you my grateful thanks and love,

Daisy
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Joe S. on June 17, 2011, 07:57:16 PM
That sounds great Daisy!
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: Bucky on June 17, 2011, 09:08:43 PM
Daisy - I'm glad you're feeling better.  May you continue to feel better with each new day.

Enjoy your weekend!   ;D

Bucky
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: ohiolady on June 19, 2011, 12:37:04 PM
Daisy,

Keep getting your rest and take good care of yourself.  How nice the Prednisone is not gving you awful side effects.  The name of your oxygen tank brought a chuckle.

Hugs,

Anna
Title: Re: Struggling to Breathe - Sjs in the Lungs
Post by: hikerknees on June 19, 2011, 05:22:50 PM
Hi Daisy,
So glad you are feeling some better, SO important to be comfortable breathing.  I saw this post just today; sorry not to express support earlier.
sue