Well, I went and had chest cat scan. Same day saw primary Doctor,We discussed everything from hospital to my new diagnosis of my lungs, to the operation.
Next Morning we went to see surgeon by 8 in the am. Im not having a lung operation this time as all cat scan and chest x-Ray came out all clear! That's right folks that's just what I said, no inflammation!! Of course They are not clear as a bell, but they can not operate unless I'm filled with inflammation. So, on one hand GOOD news,no operation. And, on another hand not so good news.
It seems that Lupus is playing havoc with my Lungs, so when in the hospital and regular antibiotics were not working they shot me up full of steriods and huge doses each day and gave me antibiotics which in return got rid of inflammation thank God. This Hospital trip again I almost died, and I kept telling them its not normal pneumonia, It's Lupus Pneuminitus! I know my body!
Now we have to wait and see what is it I'm ingesting or you know smelling or allergic to that brings all of this on to me. we know lupus is a culprit of it but what brings the germ into my body to make the lupus attack my lungs. So we must find the culprit that I breathe in or eat or smell or touch or am allergic too, in order to find out why my lungs fill with this inflamation so very fast. it comes on and then goes away so very fast with steroids we've only just found this out. also, I do have emphysema.
Dr, nurses, infectious disease internalist, are all baffled including the pulmonologist, they said I am a very complex case and in fact the infectious disease doctor came up to meet me! He said in all the years he has worked his job he's only met people on paper I am probably the third person in 45 or 55 years that he has worked with his job to meet a person because he is so baffled at what I have he wanted to put a face to the paper he was looking at! that's how bad this is.I couldnt believe it, neither could the doctors or nurses, later they said in all the years they worked they never saw him ever grab a chair and sit and talk and visit with a patient! I guess that did make me feel good knowing he cared enough to come meet me and take out his time to talk to me and visit with me. I'm not happy about this disease I hate this. I have to stay on steroids for a long time Ugh. they upped my CellCept to the highest dose I can go. I have to stay warm!! stay away from anybody that is sick, wear a mask at all times, when I'm out if anybody has any kind of sickness thay cannot be around me, I have to be the girl in the bubble more or less until we get to the bottom of what I have.
Right now my breathing is okay, I'm still weak I'm still scared, I still have no answers for you or myself.
I know I've been eating better because of the steroids prednisones, but that's not good either. so it's the drug you love to hate or hate to love either or.
So one way I feel good I don't have to have the operation right now. and in another way I don't feel good because I have still no answers for you, for me, or for anybody else. I'm right back at square one.
That is why I didn't rush here to tell you this!! because I just didn't know what to say. Other than thank you so much for your prayers your good vibes your thoughts about me...
because that means the world to me thank you from the bottom of my heart I love each and everyone of you. Love Gail XXOO
Post by skate4life on Jan 12, 2018 14:00:40 GMT -5
Gail, I am glad to hear your doc decided not to proceed with the surgery. I am not asking what hospital you are dealing with but I hope the main doctor taking care of you , in spite of his many years of experience, will continue to explore what is triggering these severe flares. Most hospitals have a medical library and librarian that can do an international research of articles with variations. While there is no hospital that is designated as a Lupus Center of Excellence, there are many major hospitals that do have large lupus departments with experts in the field. I hope your doctor might consider contacting some of these experts.
So Sorry to hear you have been through all that and glad for you that you do not have to be operated on. I will pray you figure out what is causing you to get that sick. Hope you get to feel better real soon
Dear Gail - thanks for taking the time to update us. I know how exhausted you must be but we do worry about you! Sounds like there has been some progress...and some good developments (no surgery). Hang in there as the puzzle pieces are put together. Prayers continue 🙏. Try to rest and recharge your mind and body. 😘
Gail, your experience, my experience and that of others has totally convinced me that the best advice for COPD sufferers is to keep focused on one disease at a time and not go wandering off contracting additional ones - having two or more comorbidities makes everything too complicated for the patient and the medical staff. (They need their comfort too.)
Gail; I am so happy that you are feeling better & that you don't have to have surgery, but at the same time i understand how frustrating it is NOT TO KNOW what is going on with your body. I hope they find out what is going on with you; without surgery!!!
-----it seems like the steroid is doing what it should & stopping the inflammation, but then as soon as you are off the inflammation comes back; I thought most people were on a daily steroid for life if they have advanced copd???
i'm not much help; but curious as I'm allergic to steroids so i have to take a daily 'celebrex' to keep down the inflammation; sick or well i have to take it as each time i've tried to get off i've gotten sick i can't even do an inhaler with a steroid in it; do you take something like that??
i'd love to hear from others if they take a daily steroid and/or an inhaler with a steroid every day???
Post by lavishgail on Jan 16, 2018 22:46:30 GMT -5
Y'all Rock My World! I hope y'all understand, I will be having an operation, just not this week! But just as soon as I fill up with inflammation, I call my pulmonary Doctor and she will call the surgeon, the surgeon said no matter what he is doing he will rush me in for emergency operation.
They will be opening my chest to get to the worst lung first. I thought a camera between my ribs, but my pulmonologist was incorrect. I was crying by now anyway so she got nervous , poor thing..
I've really feel so beat up and so weak. But I am through all of you're prayers, GOOD vibes, happy thoughts, getting strong, but this time it really took a toll on me. With so many steroids at such high doses, all my muscles are depleted. They are gone literary gone and skin just hanging. Predsione face and I dont look very good.but I've heard an old saying, beauty is in the eyes of the beholder, poor person. Haha. Well I'm going to go to bed! Im exhausted, its 10:45 nighty night. Ty everyone!! Love Gail, xoxs
Gail, my prayers are with you, s you say it's good and bad news. The only thing you can be easy about is that everything is set up ready to go when you get inflamed again. Take things easy, are you still colouring? or doing anything else to keep hand and mind busy? Big hugs
Post by lavishgail on Jan 18, 2018 13:37:58 GMT -5
THANK YOU SO MUCH Jarica for you're thoughts and prayers. Yes this is about a 2 to 4 hour operation. I have to have the inflammation in my lungs so that they can take pieces out and have them biopsied.
Also they said I had some hard spots in there they went to take out and most likely cleanse my lungs while I'm out. They can only do that when I'm sick and they have to be fast about it,
Yes, I'm very scared because I know that I can die! but I also know I can die with this disease so no matter what it's a catch-22.
They can't look at my lungs when they're in good condition and not full of inflammation because that will not tell them anything it will say I look great so they won't know if this is from lupus or if this is from something I'm ingesting right now.
This way they can find out what it is once and for all. and if it's a a candle or something I'm breathing in right now I can stop it and it won't happen anymore hopefully or maybe they'll have no answers who knows.I'm that very cpmplex case, So half the time IDK? HAHA.
thanks for asking Jarica. Love Gail, xxoo
Ps. And No you're not slow on understanding, I was not good at explaining! I hope this helps? Bc I really have a hard time with this myself! Hahaha.