Not very happy about my docs visit

[snooz23]

Well I was off to Cleveland Clinic to see Dr. Langford for my monthly check up (I have been on treatment since Sept. 15--mtx. and pred) feeling pretty decent. Only to have my hopes crushed. Went for my CT scan, blood work, ENT appt. (all was good), then Rheumy. It appears the nodules in my lungs are not cooperating w/ the treatment, well one in particular. One has decreased in size but a second one seems to keep growing. So now I will need a bronch??? basically where they go suck some fluid out of my lungs to rule out infection. If it is not infection then it is weighing out my new treatment options. I guess Cleveland Clinic is running a new drug trial...not sure if I will want to try something that is questionable? Plus I would need to go there many times over the next several months.

Anyway, just wondering if anyone has experienced the above procedure or have had infections detected this way?

[elephant]

Sorry to hear that snooze! March 2009 they found a nice size nodule and could not reach it through a bronch so I had a Video assisted thoracic surgery. One of the worst surgeries I ever had.
When are you having the bronch? Do you know the trial drug?
Again, I am so sorry to hear this. I know this is a scarey time for you. I will say some prayers for you tonight.

[pberggren1]

Susanne, You have only taken Meth and Pred, right?

I may be wrong but I thought that Meth can cause nodules in the lungs - Help me out here Sangye!!!

I don't like the idea of going on something that is tried and true either - it sounds scarey!

I have never heard of this bronch procedure but I hope this is just and infection for you and not WG!

How did Dr. Langford seem to you on this visit? Was she easy to talk to and gave good input? Did she ever mention that Meth can cause nodules in lungs?

[Jack]

I've had bronchoscopies in the past if that is the procedure you are having. They put a scope into your lung and take samples. In my case it was all done under sedation and I knew nothing about it. It involved no pain and I went home an hour later.

[renidrag]

I have had two bronchoscopies. Different from Jack they only sort of knocked me out. It was kind of like they needed you to be there for a little while. Still very few memories of the procedure and they got the info they wanted. If it is going to make me better I'm usually for it. Up and out in an hour with no after effects or soreness just like Jack.
Dale

[JanW]

Good luck, snooz -- try not to get discouraged; I know it's hard.

I had a partial brochoscopy done to confirm the extent of my SS (down to my trachea) with only my throat numbed, but my ENT said that to get to your lungs they would knock you out. I can't imagine them doing it any other way -- even with the partial I was practically out of the chair, completely involuntarily, and starting to try to fight him. It really triggered my fight or flight mechanism, even though I knew what was going to happen...it felt exactly like someone choking me and I couldn't control my reaction. My heart was pounding. Hope it get easier because unfortunately it will be a regular part of my care.

I didn't know that mtx could cause lung nodules. That's my only treatment right now.

[elephant]

Hang in there Snooz! I am thinking about you. Sending you positive thoughts and great outcomes on your bronchoscopy!

[Sangye]

Snooz, I'm so sorry to hear this. I'm wondering why they're talking trial drug vs ctx or rtx.

I've never heard that mtx can cause nodules. It can cause "infiltrates" which signals an allergic reaction. Infiltrates look like atypical pneumonia on x-ray and CT-- cloudy. If the mtx isn't controlling the Wegs enough, nodules can develop and existing ones can grow. This is very serious, as it can quickly escalate. I'm very relieved you're at CC. You can trust their advice implicitly.

Regarding a bronchoscopy-- Part of the procedure is filling your lungs with saline and then suctioning it out. They culture the fluid for infection and look for red blood cells (bleeding). A bronch lets them see what your lungs look like, and they can take a tissue biopsy if necessary. I had one bronch last summer and they'd be hard-pressed to get me to do another! I woke up while they were doing the flushes. I was coughing and choking non-stop. It's the same as being drowned. The coughing and choking is normal, you're just not supposed to be aware of it or to remember it afterward. I was already quite weak before the procedure and it left me completely unable to function for the next several days. Glad I was hospitalized. It's very unusual to wake up, much less to remember it. They give you a drug that induces amnesia.

[Jack]

They give you a drug that induces amnesia.

I was a bit concerned when they told me how this was going to work, but in my case at least it was fine and I remembered absolutely nothing. It was much better than the partial sedation I have had in the past for minor procedures which never seems to do anything much.

[Sangye]

The amnesia drug worked great for me during an oral surgery a couple years ago.

I also want to add that even though I was choking and couldn't breathe, I knew that the doctor knew about it. So it wasn't like the stories you hear about people waking up in surgery and no one knows it. (Anesthesia awareness)