Author Topic: ~sass~  (Read 8884 times)

sass

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~sass~
« on: June 30, 2012, 07:55:18 PM »
Well,
 I have decided to change my nickname to "Tigger". cause although I am not bouncy, wouncy, flouncy, plouncy full of fun, fun, fun!  I am feeling a bit Bounced!  My Biopsy of the Lungs are now at the Mayo clinic in Phoenix, AZ, as they are the world premier of lung biopsy. 

Makes one scratch their head!  I am still in the Hospital.  May get released Monday..or not. Depending on what new issues arise.  My hemoglobin has dropped and now they are adding the inflatable boots and iron.  Blood Pressure has risen and two BP medications have been increased.  IV Prednisone, IV Protonix, Discontinued IV Deltoid, Pain Patch on Shoulder.  Increase in Vicodin to From 1 5.0  2  7.5 every 4 hours.Neurotin every 6 hours , 2 Iron Pills twice daily, Vitamid D RX straight 2 times daily, and that is to my regular meds. 

We are starting to drawback the IV Prednisone in order to wean off for the home tablets instead of IV,  Will then later on be weaned off that and started on a chemopill.  With all this planning to kill my immune system inorder to get a "control only" of the Sjogren's inflammation that is aggressively attacking my lungs.  I am now using a walker, nice marroon with a big wide seat and a back and a litlle underseat pack, nice for water and such, portable oxygen and a variety of other things.

My incision where the drain tube was pulled, continues to drain and have had two colostomy bags that will not stay and irritates the skin horribly.  So back to bandages , that must be changed every 4-5 hours.  But a special skin cleanser/protection gel is elping leaving some skin on!  Still hoping not to have to put drain back in and then finding someone in my rural area that can change the bandages multiple times daily.  Remember my husband is handicapped in both hands. 

I have one of the top Rhuemies in the Nation and consider myself very Blessed that he was personal friends with my pulmonary that got me in the same day.  We are still awaiting all the final blood testing. 

Then the Hematologist have swarmed in and the buzzards now seem to be getting lower and lower. 

Internal Medical/Cardiologist came in and reviewed all again. same thing nothing new. but it hit me full force later on.      con't---------------------------------

T
 

sass

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Re: ~sass~
« Reply #1 on: June 30, 2012, 07:56:14 PM »
This particular autoimmune version of Sjogren's will be only a controlled situation, it has a high likelihood of going to IPF and a lung translplant, as a last resort, if they run thru these three chemo options.  And they are definitive that this is Sjogren's. 

They are very savvy on the subject and the strangest thing is I am one of the one's with all negative results.
 
Plaquenil is considered a baby drug for me, because it has already moved into the lungs.  It has been attacking my  joints, muscles, exocrine for yrs and now with the autoimmune of thyroid and the parotid issue , it is a full fledged monster, that has also moved into the esophagus, and next the possibility of the heart, with the BP raising.

I am still positive that my miracle has happened and I am a leader to wake up our society of what can be lying behind the corners.  I do not want to instill fear, but instead a shield, that you will be ready for battle.  Take better care, rest, take your meds, find a qualified Rheumy- don't let your PCP be treating you,  follow up yes, but not the treatment itself,  drink water, not sodas.  I was the worst.  Quit smoking! 

Open Lung Biopsies are not a walk in the park, and like others, once in the organs, it becomes harsh, leaving ourselves open to manifestations  that include joint inflammation; particular forms of autoimmune thyroid, kidney, liver, lung, and skin disease; and changes in nerve function of the upper or lower limbs. A small proportion of patients may progress to a form of malignant lymphoma. 

We have to fight this more.  There is not enough knowledge about this.  Consider that the top Pathologist at ST Luke's Hospital, one of the leaders in Lung Transplantation, has chosen to send my Biopsy to the One Top Sjogrens/Fibrosis teams in the World.  I was told that they are students/doctors/ of this disease.  It will read likd a novel when complete, that his team of 12-14 doctors will each study it for 8-10 each time. 

AND...AND...AND  IT MAY STILL TURN TO IPF---NO CURE!!  But where I am right now is basically like having Cancer.  I will be on Che-mo meds, I will have to be checked constantly, without all the studies and funding that goes into Cancer, I will be a hit and miss.  If not on A Constant watch for the remainder of my life, It will progress to IFP..Che-mo meds for the rest of my life.  At 53 seems hard, but I will prevail.  I will wear masks to Walmart or the grocery store or holding a grandbaby, But I will only Step Forward,  No Backwards Steps For Me!  I only have the Positive Direction to Go and I will go their b and only by the Grace Of God! 

I am sorry it was like I have fallen off the face of the forum, but sometimes you just have to shine your armor before you get back on the horse!  But Blow The Bugles Ladies and Gents for My Cry is that Of The Lord and The Trumpet of Gabriel will Play !  Stay Strong and Be Good to Yourself.  My only Request  that I ask of you is to Pray for My Husband, The Ostrich, pulling his sand soaked head into the bright sun of denial and realization.

all my love    ~sass~

Ark mom

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Re: ~sass~
« Reply #2 on: June 30, 2012, 08:54:48 PM »
Dearest, Sass, you are amazingly strong!  I admire how you facing this battle head-on.  I am very sorry that you are having to go through all of this.  I hope that things look up for you soon and that you will be going home due to a lack of complications.  You and your husband will be in my thoughts and in my heart.  I will be following your updates.  BIG HUG!
41 yo with Sjogren's (sero-neg), FMS & sub-clinical Graves; Plaquenil, Evoxac, prednisone, Restasis, Cellcept, gabapentin, duloxetine

Gayle

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Re: ~sass~
« Reply #3 on: July 01, 2012, 04:01:05 AM »
Sass! Your back!

I am so glad you have finally got back on the horse! All shined and ready to roar! Prayers for you and your husband are strong! o glad you are too!
Hugs, prayers and more hugs!
Gayle

engy

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Re: ~sass~
« Reply #4 on: July 01, 2012, 04:32:56 AM »
Sass,

What a time you are having. I'm sorry this is such a battle. I'm impressed with your attitude & will pray for you & your husband. I'm praying your docs can help you even more than they are now.

We all love ya!!
DX:Sjogrens w/mild Lupus overlap,Hashi,Celiac,Raynauds,Sm.Fiber Neuropathy,POTS,Fibro.,CFS,OI & other dysautonomia.
No thyroid
Fish/Shellfish Allergy

RX:Plaquenil,Synthroid,LCarnitine,CoQ10,ALA,Dribose,Tumeric/Curcumin, Milk Thistle,AdreneVive,Fish Oil,Flaxseed Oil,Magnesium,B12 shots,vit D & C

artistangie

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Re: ~sass~
« Reply #5 on: July 01, 2012, 04:35:03 AM »
its obviously you are a beautiful person... through all this you caution us, through all this you think of others

I will pray too <3
angie


Cricket

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Re: ~sass~
« Reply #6 on: July 01, 2012, 04:43:11 AM »
Sass you are back!  Glad to hear you are doing better.

What an ordeal you have had to go through!  Continued prayers for you and your husband. I will continue to praise God for the miracle He has given and more many more for you.

God has your name on the palm of His hand, and He continues to walk with you!

Joanie
Female 64 yrs. old with:~Lymphoma ~SJS~, Fibro, Neuropathy, Spinal  Stenosis, Degenerative Discs, Shingles Arthritis, Hypo-thyroid.
Rituxan, Synthroid, Lopressor, Vasotec, Zantac, Zyrtec, evoxac, Lexapro, Neurotin, Ambien, Zanaflex, Voltarm, Vicodin, fish oil, Centrum vit.,  CoQ10, vit. D, Miralax

mshistory

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Re: ~sass~
« Reply #7 on: July 01, 2012, 06:06:40 AM »
Thank you for the update - I've been thinking about you and wondering how you were doing. Continuing my prayers for you!
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

MissyLouWho?

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Re: ~sass~
« Reply #8 on: July 01, 2012, 06:13:28 AM »
There you are Sass!  So glad to hear you in such good spirits ;D.  This has been a rollercoaster ride for sure.  May things continue in a positive direction for you sweetie!

Is there anyone close that can help with your bandages?  Or a family member that can stay with you for a time to help out?  Maybe insurance will cover a nurse for in home care...

Big hugs and hallelujah prayers!!!  And many more healing prayers too, of course :)

susan

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Re: ~sass~
« Reply #9 on: July 01, 2012, 08:25:42 AM »


Hi Sass,

Good to have your update, although I am sorry you are having a rough time!

You are right, this could happen to any of us and we need to take care.

Thank you for thinking of us in the midst of your illness; you have fabulous coping skills!
Sjogrens, Stills disease, Acromegaly, Interstitial cystitis

Plaquenil, Prednisone, Octreotide injectable, Crestor, Xanax

genko_b

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Re: ~sass~
« Reply #10 on: July 01, 2012, 08:31:02 AM »
Thank you so much for keeping us informed of your condition. We are all waiting to hear the biopsy results. I know how frustrating this can be, having had similar lung problems earlier this year, but at least mine have mostly resolved themselves.

Your husband must be so worried. We are thinking of you both, and hope you will soon find a way to relieve things.

Take care,

Genko

iraisin

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Re: ~sass~
« Reply #11 on: July 01, 2012, 01:07:34 PM »
Sass, I am numb after reading your post. I always thought of those who change the way others think as being "spokesman" for whatever, professional athletes, movie stars, energetic people who go out and "make a difference". I just want you to know, I have smoked since I was 14 years old - had SJS since I was a small child. My glands first swelled up in elementary school. I can't travel to dry climates or I get sick.

YOU. You and what you are going through, and what you say, and how you say it, is so impactful. You are so much more than one of those "spokes people". You have greatly impacted me and the way I will think from now on. You are such a magnificent creature...truly formed by God without any doubt.

I thank you from the bottom of my heart, for enduring, warrioring, fighting, and inspiring. I cry here, reading your post, that I will probably read everyday while trying to quit these cigarettes. Denial is bliss, but very temporary. Thank you for waking me up. I want to hug you so bad right now. There is no stress in life worth killing myself one cigarette at a time.

You are so strong in my heart right now. You're a true hero. I respect you very much. Many prayers of blessings to you, my friend.

eye2dry

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Re: ~sass~
« Reply #12 on: July 02, 2012, 07:01:55 PM »
Oh Sass.....you are so positive and brave.....I wish I had the power to take all this away from you....you were heavy on my mind yesterday (sunday))...........

I continue to pray and hope for you.......

keep us updated as you can.


eye2dry

sass

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Re: ~sass~
« Reply #13 on: July 03, 2012, 07:22:22 PM »
WooHoo!! Home! 
  Wow, What an Experience!  And I could have not faced it with the tenacity that I got from you guYS.  i Started this post about 5 hours ago and things have just been so explosive around here.  I am very tired and have taken my night medicines, but wanted you to know I am home. 
I am delighted to be here and to share it with you.  Please give me till tomorrow to catch up some more.  Home Health Nurse coming at 10am and that will be lengthy.

Very Briefly for now- I got word from Mayo Clinic pathology/  I have an extremley rare lung disease called CHRONIC OBSTRUCTIVE BRONCHIOLITIS...NOT COPD AT ALL...i HAVE THE FIBROSIS ALREADY IN THE LOWER PART OF BOTH LUNGS!   It is in the Cystic Fibrosis Family, and I am ready for a fight!  Right now Steroids, then later it will taper off and then aggressive Chemo rounds,  etc etc.  Again all my Sjogrens blood labs are normal ranges, but without a doubt it is Sjogrens, related with some genetic thing in the lungs.  Mayo says it is within those parameters. 

Okay, I am dozing ...time to go!  We gotta get the word out!  Later on this.

~sass~
« Last Edit: July 04, 2012, 11:28:00 AM by sass »

Reanne

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Re: ~sass~
« Reply #14 on: July 03, 2012, 11:17:42 PM »
Sass,  I am glad you made it home and that you are hopefully sleeping by now.  You are unbelievably a strong and positive individual.  Thank you for the short update.  I always look for your posts when I visit the site.  You are in my thoughts and prayers. 

Reanne