Not very happy about my docs visit

[Lightwarrior]

You need to have a Doc skilled in doing Bronchs and a RN and Respiratory Therapist who have experience. The procedure is done under what is called Conscious sedation and should not be traumatic for you. Like Jack I came in they medicated me, kept me for about an hour after to make sure I could maintain Oxygen levels and walk and talk, that someone was there to drive me home and i got to leave. They should give you sedation and pain control, a good nurse will insist that the Doc do this. In my case my daughter was in the room and during the procedure the computer went down and they had to fix (my Roswell alien DNA???) she said the nurse insisted that they give either wake me or give me more medication, they selected the later and truthfully I never knew, which is how it should be.

As the patient you have the right to ask how they wil medicate you, tell them that you are anxious, ask them to include pain control along with sedation. This should be basic, but sometimes patients have to ask, if they aren't willing then you have the right to request another provider who will. You pay them, they work for you. Make sure you include any bad experiences and ask them how they will avoid a repeat. Fair questions that should be heppily answered by providers who are focused on outcomes and patient safety.

[Sangye]

I was thoroughly sedated and remember drifting away, it's just that I woke up in the middle of it and then the amnesia drug didn't work. When I had my oral surgery in 2007, the doc said sometimes the amnesia drug doesn't work and there's no way to predict when that might happen.

I agree with your recommendations, Lightwarrior. My experience happened with a highly experienced pulmy at JHU. Just my karma.

[snooz23]

Thanks for all the insight and thoughts, I appreciate it. This is exactly the procedure they will do and it will be at the Cleveland Clinic, where they do them like clockwork from my understanding.

The really devastating news was that it is more than likely wgs. is not under control. It's so very disturbing because I have been feeling quite well (in comparison), WEEKLY blood/urine work good, going to work, getting some form of exercise each day, taking it easy yet trying to enjoy as much as I can. It is just so unbelievable you can be taking all the treatment and yet the disease continues to attack and flare, just makes no sense. However I do know many of you talk about mtx. not being strong enough to induce remission, so maybe the next thing will knock it out.

Oh, also they are going to give me some options for next steps..ctx or rtx or this new drug (all will include going back up on pred. which I HATE, I was finally down to 10mg and had worked so hard). I think after they rule out the infection I will be given all the options and need to decide. I have a feeling I will be choosing between ctx and rtx--any recommendations (I know everyone is different)???

FYI--the bronch. is scheduled for Feb. 18 much more in the future than I would like.....I cannot stand the worry and anxiety (I thought natural childbirth was a true test of meditation and visualization--ovbiously wgs was not in my life at that point).

[Sangye]

I want to call Wegs all sorts of nasty names right now! I'm so sorry that you're experiencing this, Snooz.

Given a choice between ctx and rtx, I would definitely choose rtx. Insurance might make the choice for you, though. They typically require you to "fail" on ctx before authorizing rtx. But someone on here recently got rtx authorized without that. Maybe it's changing because of the latest study showing rtx is as good as ctx in inducing remission (and slightly better, actually).

Pred-- I truly feel for you. But given that you're feelng pretty well, maybe they won't have to increase it a lot, or maybe not for as long a stretch.

I think of Wegs as one drawn out meditation. The fears and "what if's" will keep surfacing, but you don't have to let them take hold of your thoughts. If you meditate then you know what to do: Keep bringing your mind back to where you want it to be with gentle nudges.

[snooz23]

Thanks Sangye. Yes I have called wegs so many horrible names and am so MAD at it right now. Of course, I have cried enough tears in the last 24 hours to fill a swimming pool. Before when I was in so much pain from wegs, which was not yet dx. I could only cry a little bit because my ears, nasal, sinuses would fill it so fast and become so incredibly plugged I HAD to stop. I was so mad then too because I was like I can't even cry over this thing!!! Since that is all feeling better at this point, I guess I am using it. Now I must figure out how to STOP and move forward. Maybe rtx will be the answer (if I am "allowed" to try it).

[Jack]

Sorry to hear of your troubles snooz, I know exactly how you feel and send out my sympathy. Unfortunately relapses are very common and go with the disease. The only up side is that you will probably get over this much more quickly than when first diagnosed and with far fewer symptoms. It is a case of three steps forward and one back, but you'll get there in the end.

[elephant]

Snooz, I know it is no fun waiting till Feb 18. You will do fine. Glad they found the nodule in time for it not to do more damage. Did they say why you had to wait till then? My guess is probably they think it won't grow that fast. I am saying a prayer for you!

[pberggren1]

Sorry guys! Sangye is right! It is infiltrates that Methotrexate can cause, not nodules.

That seems like a long time to wait for the bronch Susanne!

My thoughts and prayers are with you!

[elephant]

Snooz, how often are they checking your lungs with CT?

[JanW]

Hope all goes well for you on 2/18 Snooz. I bet they don't think it will grow very quickly at all.

My doc says that it's still hard to get rtx prescribed, but more dependent on insurer and that you don't necessarily have to fail on ctx, for what it's worth. He said it depends a lot on how hard the doc is willing to fight for it.