Author Topic: Struggling to Breathe - Sjs in the Lungs  (Read 17532 times)

Daisy1234

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Struggling to Breathe - Sjs in the Lungs
« 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

Joe S.

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #1 on: June 07, 2011, 06:38:35 AM »
The only thing that I can suggest is listening to tones and taking supplements.
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cremer

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #2 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.

Daisy1234

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #3 on: June 07, 2011, 07:10:52 AM »
Thank you Joe and Cremer for both of your responses and caring.  Appreciate the kindness!

Daisy

Shade

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #4 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
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Kerrikins

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #5 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!))

ohiolady

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #6 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
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HL in NY

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #7 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

Daisy1234

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #8 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


One and only

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #9 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

anita

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #10 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.
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Daisy1234

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #11 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

irish

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #12 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

Daisy1234

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #13 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

shevonne

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Re: Struggling to Breathe - Sjs in the Lungs
« Reply #14 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.