yes, the mayo clinic report is in

[sass]

Last night I sat up and put in a wonderfully informative report and lost it all.  So here goes again.  I am doing an abbreviated version somewhat:

According to my Pulmonary and St Lukes Pathologist this is the number one lung pathologist in the world.

I have reviewed patient slides....pt suspected to  have Sjogren syndrome..mothe had it with lung involvment...Patient has patchy ground blass infiltrates.  Patient has progressive dyspnea.

In my opinion there are airway and inflammatory changes here consistent with SS..


There are changes in the small airways including chronic cellular bronchiolitis, constrictive bronchiolitis  {thus the COB--,Constrictive obliterative bronchiolitis one of the things the discharge dr told us} and ectatic bronchioles containing mucostasis and cellular stasis and some bronchioles that are much smaller than their accompanying arteries.  All of these findings suggest constrictive bronchiolitis which can be a complication of Sjogren syndrome.

I think it would be advisable and worthwhile re-reviewing CT scans to see if in fact the changes are consistent with the mosaic patterns seen with small airway disease also.

In addition, as you have noted, there is some focal perivascular inflammatory infiltrates that include granulomas.  I think this are also compatible with Sjogren syndrome.

With your permission, I would like to retain these slides to be used in my teaching files. They will be very beneficial in the teaching of these pathology findings.

I appreciate the opportunity to review these unusual unique and rare slides. 

Lung, left lower lobe, wedge biopsies
Airway and inflammatory changes consistent with Sjogren syndrome.

Pulmonary say there probably will be a novel to follow!


Okay, My Pulmonary says that he is going to keep The Rheumy advised and updated at all times of the lungs and that the Rheumy will make the decision of treatment under the advisement of several, himself included.  Finding this at the time we did, they feel like They are already on the right approach to slow the progression of this disease down.  High doses of Prednisone will be slowed s they start the increase of the chemo.  The hope that goes along with that is the chemo will help the lungs AND the other symptoms of SS.  Relief in pain would be an added benefit.

I am going to stop and post before I loose anything.....~sass~

[iraisin]

Well, seems you are subject for the next great medical journal article. At least they are figuring it out and taking a proactive approach for you. I can't imagine the pain and fatigue you must have non-stop. I really hope the chemo helps ease that and you get a decent quality of life out of this.

My prayers go out for you Mcgyvette

[sass]

Craig asked about the seriousness of the situation and Dr said this is a critical case.  As progressive as it was moving, it would have grown throughout both lungs very quickly.  X-rays showed him yesterday, that they have already made progress in slowing it and he was pleased with his findings.

The autoimmune system is being killed off and I have to use my common sense, but I can get around my grandbabies!!!!  And get out and about.  That may change in the future, but for now I am ecstatic. 

Use some disinfection lotion on buggies...I can use gloves if I want and probably will due to having to do my blood sugar  now,(for Prednisone)with every prick, my fingers are splitting.  They said I am probably picking up some bacteria, etc washing dishes and things.  I am keeping that Cavilon Durable Barrier Cream  on it.
 
The  High dosages of prednisone prevents all of my boo boo's from healing, including the Lung Biopsy Drainage Tract and incisions.  Thus the extreme pain and reopening of the wound at the Hotel.

 Surgeon was impressed with my quick thinking and moves like a cat in the night...lmbo...The sight is clean and healthy and she removed the stitch.  Drainage and Pain can last anywhere from 6 weeks to 6 months(for the pain).  No hill for a stepper!

My doctor is so funny, when Craig asked him about just keeping me on the prednisone, the  DR said, well at her autospy her lungs would look great, but she would not live to let it help her!   This guy is great...talked about his having to play peace keeper at his family reunion.  Finding someone so good and relaxed to share some real life is highly unusual. 
Blessed I am...

He did say that there is still a high danger of seriousness involved with these findings..
It can turn to the orginial Dx still with treatment.  That is a concern, and they perfer not to run back to the steroids..But it is not that now.  He still circled IPF on the insurance code sheet as well as several other codes...

Lung Transplant is not out of the realm possibly sometime in my future, but neither is winning the lottery.lol

hopefully i get to see my grandchildren this weekend. That would make one happy Sassy!

This is all very serious for everyone for Sjogren syndrome....My blood work still shows up negative for Sjogrens...including my lip biopsy...but my open lung biopsy shows it there in advanced form.  I have the symptoms that for some reason are out of the norm.  bloodwork good...Parotid Gland bad.....Dry everwhere...lip biopsy negative!!

This is a very twisted world my body deals with....But hey, I always like THE TWIST....

come on baby, let's do the twist.....~sass~

[Gayle]

You are a twisted sister! I am happy you have such an amazing team! I am glad Craig asked questions! Wow, you are amazing and I hope the pain will back off soon. Enjoy the grandbabies... steer clear from germs as is possible and relax! you are loved!

Gayle

[sass]

iraisin, you are too funny girl!!

 You make me laugh and smile! You are wonderful!

I think I should backtrack and say what the Pulmonary meant is that he will probably be getting a "novel" of paperwork that will follow this initial report.  He said these guys are like gurus..about 8-10 of them and they each check and re-check. then they will all turn in opinions and intricate details about all...almost as if they are always students of medicine...always studying the fine details and such...

Thank you for soo much support,  You have been instrumental to keeping me going down this Houston path.  I have started out that way many times and just usually give up...but reading your words and seeing the work you have went through, made me feel like I would be wasting all your hard work.  And then all the work Gayle provided, well same thing. 

Everybody has moved me forward to finding the results..I am not a quitter, just a stopper sometimes...frustration moves in so I just simply stop..Not Anymore!

Mcgyvette Out   ~sass~   

[sass]

This is a tad of reading info given to me to read.

Outcome and Complications
The prognosis for constrictive bronchiolitis obliterans is usually poor. The outcome depends on the severity of the process and whether there is a progressive nature to the lesion. Corticosteroid therapy has no effect on the end-stage fibrotic process; however, acute exacerbations associated with an inflammatory response may be responsive to a course of corticosteroid therapy. Chronic respiratory failure is the major complication.

Causes of Constrictive Bronchiolitis Obliterans and Associated Disorders
Idiopathic Constrictive Bronchiolitis Obliterans
Idiopathic constrictive bronchiolitis obliterans is a rare disorder, although periodic reports continue to be published.9,10 The clinical course is variable with periods of stability and exacerbations. Bronchodilators are used if helpful, and a brief course of corticosteroid therapy can be used for exacerbations. A study by Myong and colleagues10 of three women with idiopathic constrictive bronchiolitis and airflow obstruction found that all three had a cough, progressive shortness of breath, and biopsy results showing constrictive bronchiolitis. Two of the three women had crackles. One patient died, and the other two were stable with persistent respiratory symptoms.

[iraisin]

I am just too much of a titty-baby for that. I have no idea how you stay so upbeat. You are such a wonder, Sass.

[Sleepy In Seattle]

YOU ARE NOW FAMOUS!!!! 

I am so glad some really high-power people are interested in your case...I just wish they didn't need to be.
Happy healing, and here's hoping the transition from steroids to chemo goes well....

[Cricket]

Sass

I do not understand everything you wrote, but what I did gather was good news, seeing your grandchildren and being able to go out.

Sass I am so worn out, mentally, that I have no engery to do anything.  My gland is hurting and so is my eye, I think once they disturbed everything it made it hurt worse.  Good thing the Lord is holding me up cause I would not even be able to take a step on my own.  Even if you hear from me on here I am praying for you, rest up from your trip and hope the pain lets up.

Joanie

[sass]

ahhh, Miss Joanie, there you are!

been so worried about you.  do not worry about writing anything.  Just sign on one word and that way I know that you are hanging in there with me!  Code Word for anyone wanting to just touch base and say nothing....How about  "Daisy"  for Daisy1234, one of the strongest people on here that has lifted me and inspired me so much.  So if you are weak and just want to peep...write "Daisy"!!!  That can go for all of us!

Sometimes the fatigue is just too much.  The pain and the fear can get the best of us.  But if you know that at the same time everyday, I will close my eyes in prayer for you...all of you, Then there is comfort knowing that we two or five or forty or all praying at the same time together.  Prayber Warrioring!  lol... 

I have a friend that she knows everyday when I left my house on my journey to work, 8:00 a.m.  when I turned my key, I stopped and said a prayer just for her.  And she did the same thing for me.  Knowing...truly knowing that we were praying for the other at the same time started my day off and added comfort. 

Then for every automobile or person I passed I would say a quick prayer for that person.  Bless them Lord, Keep them safe, give them peace...just whatever popped in my head.  sometimes when you are being passed or cut off and you remember to say or keep them safe on their journey..it just makes a peaceful trip...and sometimes i may even add, Lord send a policeman up the road to slow these poor people down!  hahaheehee...

Singing and Praying on the way to work is the only way to go...And when people looked at me oddly, I just smile and wave!!  They would either laugh or shake their head or join me! 

http://www.youtube.com/watch?v=K16fG1sDagU
Sign on to you tube and go here just for a laugh!!  We all need  to laugh! 

http://www.youtube.com/watch?v=aZFjMdrtWiI&feature=related
Not a good version, but this song means so much to me!   Listen to the words if you can! 

~sass~

http://www.youtube.com/watch?v=bDp0cQ35qjU   another artist version...good too!

[genko_b]

Hi Sass:

That is relatively good news you are reporting. I hope you figure out a way to balance out the meds to give you the best result. My father had CBO and was on massive prednisone for a while, which worked very well for him - gave him a lot of energy too - but they were not able to keep it up and he ended up on an oxygen tank.

Hang in there. It sounds like you have some excellent docs which is a blessing.

By the way, I always wish passing cars and people May you be safe, healthy and happy and be at peace. How nice to know someone else does that too!

Take care,

Genko

[sass]

Genko, 

Yes it is nice to know that there are people like you, angels, that pray for strangers!!
 I am thankful that so many have done it for me..thanks for your post.  Right now I am on 24 hr oxygen, but they have let me decrease the level down one..and tolerating quite well!
 
~sass~

[Sleepy In Seattle]

"By the way, I always wish passing cars and people May you be safe, healthy and happy and be at peace. How nice to know someone else does that too!"

HA! I do that too...and in airports, etc...I don't know why. That's really funny, that others do it too. Makes me happy and not feel like such a nutbag!!!

I have to admit to slipping a few bad words in there when it's somebody cutting me off or talking on their cellphone while driving or otherwise being an idiot, but I still try to have compassion for somebody whose life is so frantic that they feel the need to drive like that....I guess I am wishing more peace and wisdom for them, and some serenity for me!!!! 

[iraisin]

You all tickle me so. I just love you guys.

I think sometimes, watching my dogs, when they get all fussy and stressed about little things and I giggle at them because I know how it's going to turn out (because I'm handling it for them) - if God does that with us. If He sees us worrying and getting fussy, if He just giggles, because He adores us and knows He will take care of our worries.

I like to think so. I trust Him through this and rest in knowing He will handle it. I do get fussy though, and am ready for Him to handle it . But He has a plan for me, so...

You all charm me so.

[slccom]

I say a prayer for everyone involved whenever I hear a siren. And for everyone on this board. Sass, if you need oxygen all the time, see if you can get a portable concentrator for going out and about.

Hugs, to all, Shaorn