Well, I finally have surgury date set up. On January 22 I will go in for another exploratory scoping and biopsies of my nasal pharynx, throat, trachea, sinuses, etc. My ENT is at the end of his rope and said time to do this again. At least I have all these autoimmune diagnoses now so we know what we are dealing with.
When I had my IVIG last week and my appt with immunologist I coughed and hacked all day. Talked with this doc about it and he said "something is wrong" and you need to have this scoping, etc under anesthesia. He called my ENT(he thinks very highly of my ENT and works with him) and talked "me" over. All these infections may be because of more than my low t-cells. I think I could have some chronic infection that is hiding good.
Something has been happening in my throat and I will get so full and feel like I can't swallow well and then it is like it empties out. I find myself massaging my neck upwards as if to empty or move the mucus up and out. I have questioned fistuals for years and none to be found. The cat scan I had showed some "abnormal" tissue or issues in my trachea below my larynx and at the base of my tongue. I feel like I am coughing or hacking mucus out of the base of my tongue and that opening(or whatevery) has gotten larger.
I have to admit that I am prepared for any big time scenarios---such as extensive repair that could require a trach til the swelling and healing is over. Also, will have to write things down for my hubby and 2 sons who are on my health care declaration. I would consent to a "temporary" feeding tube while I heal, but if I have a stroke, brain damage just let me go softly into the night.
And again, I am now under the gun to get some of the stuff done around here. Will try to get things organized for income tax cause my hubby has never gotten it together. Man, trying to figure out this stuff will take some thinking so my brain better be in gear.
Also, I may have to stay in longer than day surgery with my MG. Depends on how much stress I go through surgery wise. Also, I have to take my computer in to get "healed" as it is driving me nutz. You should see what I have to do to get online. My email is hardly working. Irish ;D
Hey Irish,
I have been wondering about your progress. It is good to hear your drs communicate well and they are moving forward in finding an answer to your complications.
Sorry it involves surgery.
I pray they find all the nasty culprits that might be attacking your body. I pray positive results and a great recovery.
You are a hero and very precious to all in our sjoggy family.
love and blessings, kimbo
Hi Irish,
I'm glad to see that your doctor is finally looking to see what is hiding in your throat area. You must be so frustrated with all you've been through the last several months.
I'll keep you in my thoughts and prayers and hopefully your surgeon will find the culprit once and for all! You sure deserve a break!
Please hang in there and take care of yourself -
Patze
Irish,
I pray that you will come through this with some answers that will lead to solving the problems. I am facing surgery, in the near future, and understand the need to tie up all the loose ends. I hope it helps to know that you will be in the thoughts and prayers of so many here on the board.
Anna
Irish,
What are you talking about? You will be just fine, with all you have been going through, your doctors can't afford to let anything happen to you, your their gold mine!
All kidding aside, I am sure they will fix you up, but I know only too well what is going through your mind, for me the waiting is pure torture and can be worse then the procedure.
I know you will fine with everyone sending good vibes your way ;D
Hi Irish,
I'm sure you will do just fine, with your attitude and humor, it couldn't be any other way.
Glad to hear you will get to celebrate your birthday before all this happens. It would be a shame to miss all that birthday cake and ice cream. ;D
Take care dear friend, you will be in my thoughts and prayers.
Hugs and God Bless,
Pooh
Hi Irish :)
Glad to hear you have a date set. I hope they get to the borrom of what's going on and can alleviate the problem for you.
Take care - Scottie :)
Hi Irish:
Here's hoping this surgery will give you the answers you need. I'll be thinking of you that day.
I'm heading into surgery myself January 29, to try to tighten up some of the connective tissue in my lower abdomen so that the organs in there aren't drooping down so much. It has become quite painful and difficult. Who knew such a thing could happen! Anyway, by the time you are back on line I will likely be off line for a while, soI'll be hoping everything has gone well for you.
Genko
Irish
I'm sorry that you have to go through this. but I will be praying that you come out of it a whole lot better.
God bless.
Kathyx
I hope all goes well for you and they are able to help get to the bottom of this.Best of luck.
Ruby
Irish,
So glad to hear that your docs are working together on your "case"....that is great!
I hope you get some answers after this surgery so that you can get some relief soon! You have been dealing with all of this for too long!
I will keep you in my thoughts and prayers Irish!
Lots of big but gentle hugs to you! (http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org)
Irish-
Ditto on everything the others have said. I hope this gets to the bottom of all the problems you've been having.
You'll be in my prayers,
Tracy
Irish...
I'm sorry this has come to down to surgery. But on the other hand I'm hoping the procedure will give a complete picture of what's going on... I'm learning a lot about stress lately and 'worrying'... I'm starting to realize that too much is definitely costly to our health and well-being... my point, worrying about what is wrong with you can't be good at all... and getting to the bottom of this is coming none too soon for you... I'm hoping you have a smooth procedure and recovery.. We are all rooting for you here... {hugs}
Hi Irish,
It sounds like you have good doctors so hopefully your surgery will go very well. NO "big time scenarios" for you! I can certainly relate to wanting to get everything organized for your family. Been there, done that, still doing it. I sure was hoping this was going to be a better year for all of us, but so far I haven't seen it. But, the good news about this is that if they find out what's going on, they can help you. That will make it worth it.
I thought it was strange that I haven't heard from you lately. I replied to your email but then didn't hear back from you. I didn't realize you were having puter problems. You know I'll be thinking of you. If possible, could someone email one of us to let us know how you are doing after the surgery?
Take care my friend. You know how to reach me if you feel like talking. :)
Hugs,
quig
Hi Irish:
You will be in my thoughts and prayers also -praying that the docs can fix this problem once and for all and you will be comfortable and in good health!
Sue
Hi Irish,
Gee, what a mess. I'm sorry you have to go through all this, but hoping it will make you better. I'll bet your husband would say you're "too ornery" for anything to go wrong. :o Lucy
Hi folks, Thanks for you kind posts.
Epson, Yes, I am somebody's "gold mine" and have been for a good many years.
Lucy, You bet my hubby calls me "ornery". However, he wants me (both of us) to make up our funeral plans before I have this done. It is one of those painful things that should be done. My MIL didn't write it down and I buried her in the wrong dress and her neck showed!
I am to the point that one minute I feel lousy and think something is wrong and the next minute it is some better and I think I am imaging it! I guess that I will be surprised if I end up with anything that is really serious, but I have also wondered if I need lymph tissue biopsied in my throat due to all the issues that I have.
Quiger, Yes, my computer is acting up. I think it is a virus and it started very slowly doing strange things and I just kept putting off taking it in. Now you should see the stuff it is doing. I can't email, but I sometimes will get email.
Also, I will have to see if I can get my DIL (who lives close to my immunologist and where I stay prior to infusions when I drive up alone) to post. If she forgets, just stay patient and she or I will get back to you. I have always done amazingly well with surgeries (even when I smoked) but it has been about 4 years since anesthesia and I am older and more worn out. ::) ::) Take care all of you and stay as healthy as possible. Irish ;D
Irish,
Please let me add my best wishes and prayers on your behalf! It sounds as if you have a good doctor team, and I'm sure that biopsies will be done if there is suspicious tissue. I hope you get some answers that are easily dealt with. We will be glad when it is behind you.
I'm impressed that you are letting this motivate you to get so many things in order. It will be wonderful to look back on this time and be proud of your accomplishments. I've never been caught up on everything at once; if you manage that, I want to hear how it feels. :)
Cheryl
My dear Irish, it sure sounds horrible what you are going through right now. Along with everyone else I will be thinking of you and also keep you in my prayers that the surgery will put an end to your agony... I'm just recovering from the cold from heck,and felt like I was on my last , I can't imagine how horrible it is for you.. So my friend get into that true grit mode of yours and get back to us soon. loads of good vibes winging over to you from the UK
All the best Dolly xxxxx
l
Irish . . . sending a virtual card to you:
"Just knowing that someone is thinking of you
and wishing you well can make you feel
a little better, make your cares a little lighter,
your heart a little happier, and your day a
little brighter."
Your friends here in Sjogrens World is that someone. ;D
Take care and best wishes on your surgery.
Bucky
Irish honey
YOu have certainly been through the ringer these past months so i hope this lttle exploration finds some answers to give you as break.
You sound very mentally prepared and that is half the batte going into these things. stay positive and handle each thing as it comes. its good you are making plans. no one ever wants thingsto happen but you need to be on the safe side.
I have every confidence that you will come out with flying colours and be back telling us all about your adventures in no time.
Good luck my friend my thoughts will be with you
Pud