Still in diagnosis limbo

[Dirty Don]

I had a lung biopsy...it was definitive. Got right to the heart of the matter right away. As for others, why do we care what others think...I only care what my loved ones and those who are familiar and care to be familiar with what I am think...way it is...I don't bother with other people's thoughts about this disease anymore...only you on here, my docs, and my loved ones count...makes me stronger that way too!

[annekat]

Well, Don, I'm not sure I do care so much what they think, and if I happen to tell them that they are wrong and they don't understand, I won't care what they think about that, either.... You do have a good point, though, and it is probably best to just ignore them..... not responding at all, just giving them a blank look, might be another way of handling it.... it wouldn't be the response they were fishing for.

[Jaha]

I had a wegs specialist tell me that she hated that term limited wegs, because it is all serious business. I thought that was good for me to hear.As for all the people that make comments about how well we look at times, they really have no clue and never will.

[BookNut]

All good perspectives for me to keep in mind as I navigate this maze!

Updating my scenario...... When my ENT's office manager called the pulmonologist, she was told that the doctor was scheduling into May, and they would get back to me. When I did not get a call from them, I called the general group office myself where they tried to pawn me off on a different doctor. However, I was insistant. I told them that both my doctors were recommending him, so I wanted only Dr. Nead. They finally gave me the direct number to his office. Incidently, it was obvious that the general office staff there had never heard of Wegeners. I gave the office manager at Dr. Nead's office my brief history. Interestingly, they called back the next day and gave me an appt....next Friday. Yay! Guess a not-so-pushy person would be put off till May. Or maybe the tentative WG dianosis perked them up!

Will keep you informed. Interestingly....the rheumy who made the diagnosis has been trying to get hold of me to find out why I am not taking the imuran yet. That will be an interesting conversation when we finally stop playing phone tag!

[annekat]

Medical personnel MIGHT have heard of GPA if they don't know what Wegener's is. When I get a chest xray, I'm usually not asked by the technician what my condition is (is it their business?), but one time, I was asked, seemingly out of curiosity. I answered "Wegener's Granulomatosis", which drew a blank, so then I said "it's a form of vasculitis, also goes by name of GPA" and that was something they had heard of and acted like they knew something about. Maybe there have been briefings due to the name change.

Why you are not taking the Imuran yet? Because you haven't been diagnosed with WG! This continues to seem weird to me. But I suppose she has a point, you can't get a dx, but probably have it, according to her? So she thinks you should take the drug.... presumably, if you don't have WG after all, it won't hurt you to have taken it just in case? I don't know. But this just doesn't sound like the standard procedure among the cases I've read about on the forum.

[BookNut]

I am actually the one resisting imuran, until I have a definite diagnosis. Once verified by a lung biopsy, I will start Imuran immediately. I am sure my rheumy is trying to reach me to chatise me for not taking the imuran as directed. I just want to be sure before I take something with a "black box" warning of possible lymphoma etc. Once I know, I will take it and be happy to take it in the hopes of avoiding cytoxan, kidney involvement etc.

If the lung biopsy is inconclusive....well.....I don't really want to think about that possibility yet. My PCP is against me taking Imuran at all. I will feel perfectly comfortable ignoring that advice if the biopsy confirms WG. If the biopsy is inconclusive, it will be a bit of a dilemma. If my rheumy and allergist vote for me taking it, I will most likely go with their advice over the PCP. It seems worth the risk if it will stave off WG. I just hope the biopsy will be definitive, making the decision a no-brainer.

I know most of you probably think I am crazy to procrastinate. But....Remember, all of this is happening during a period (4 months and counting) during which I have felt quite good, other than a week with the flu. I have good energy levels, clear sinuses, NO shortness of breath, and "only" daily mild coughing, and a wheeze that is only apparent to me when I exhale deeply. Granted, that wheeze never goes away, and sometimes becomes audible to those around me. But the coughing clears it up for an hour or so. It is relatively easy to live with compared to last summer and this Fall. But maybe I have just come to see it as my "new normal".

[annekat]

Booknut, we are on the same page. When I said "Why are you not taking the Imuran yet?", it was a rhetorical question, followed by the reason that you aren't!. I think most people on here would agree that it is not usual to go ahead and take the drug without a conclusive dx. I do see your dilemma, though, if you continue to be unable to get a dx! Then you might decide to go ahead and take it, and I'm not sure that anyone should judge you for that. And if you do, I wouldn't worry so much about the risks. I think it is considered one of the milder and less toxic WG drugs, compared to CTX, which I took. Any incidences of lymphoma or whatever else is cited are quite rare, I'm sure.

So no, I don't think you are procrastinating, and I doubt anyone else does, either. I think you are doing what any of us would do, not just taking the word of people who aren't WG specialists that you should take such and such a drug without even having a dx.

It would be great if you DON'T have WG, but I hope you get a definitive answer soon, either way, so you can move on with this decision in good conscience! Good luck!

[BookNut]

I am so appreciative of your help and support. Everyone's input has really helped me understand the choices, sort things out and decide on a plan of action. Can't ask for better than that! Also feeling better about a trial of Imuran if things drag on much longer.

[Terri]

[QUOTE=BookNut;66955]I am so appreciative of your help and support. Everyone's input has really helped me understand the choices, sort things out and decide on a plan of action. Can't ask for better than that!

I don't know where I would be without the help I've gotten from this forum. My first thought was finally...someone knows how I feel!
Tonight I have a heavy heart. I received a phone call on Wed. telling me about someone that had the same disease that I have. To make a long story short..I had told her I would come and visit her in the hospital as soon as I could. I went this evening to see her and wasn't even able to talk to her. This morning her left lung had collapsed and she is now on a ventilator. Her husband told me she was definitely diagnosed with GPA. She had been in the hospital in Aug. and was diagnosed with pneumonia and was put on prednisone (not sure how much) and was recently taken off. They are now starting her on CTX. I just felt so bad when I saw her, thinking that could be ME. I will continue to check on her progress. As it turns out, we live in the same town. Wow! Imagine that! Now I will have someone to talk to in person. I just pray she gets better.

[rebekah]

I agree, Terri - I am so glad I found this forum with such incredible and helpful people... I don't know where I would be without you all! I'm so sorry you got that call. Having someone to talk to in person who knows what you're going through would be nice. Glad you live near her and can at least go visit. I send my well wishes to her and hope she gets well soon!