Latest CT Scan Results

[pberggren1]

So who are you consulting with in Rochester? Have you gone there in person?

Was your last bronch just a look and see? Or was it a surgery of some sort? Ballooning? Cutting?

I would consult a interventional pulmonary doc with JHU as well....good idea.

So the mayo doc wants to remove the lobes where the calcium is? How will this be done?

[pberggren1]

I would give Specks an e-mail and see what he has to say. I'm sure he would help. A trip to Rochester might be in your future. If you want his e-mail just let me know.

[annekat]

Cindy, it must be so hard when your docs disagree on the best course of action. I hope the advice from Rochester will help clear the air. Continuing to send out good thoughts and prayers as you continue to show your strength of character in dealing with this proactively.

[windchime]

So who are you consulting with in Rochester? Have you gone there in person?

Was your last bronch just a look and see? Or was it a surgery of some sort? Ballooning? Cutting?

I would consult a interventional pulmonary doc with JHU as well....good idea.

So the mayo doc wants to remove the lobes where the calcium is? How will this be done?

I had a biopsy and well as dilation and it was done by an interventional pulmonologist. No they can't touch anything in the mediastinum as it is inoperable. They want to remove the to two lobes that are collapsed.

Since I've already developed a relationship of sorts with Dr. Loyd at Vanderbilt I may make an appt with him instead of trying JH.

I've asked my docs at Mayo to consult with Dr. Specks specifically. I just sent my Mayo doc an email advising NO bronch until I know what Rochester thinks.

Phil if you could PM Dr. Specks email a I would appreciate it.

Thanks for all the continued support from everyone. Your support is what gets me through this very trying time.

[pberggren1]

I know how scary this can be Cindy. We are all here for you.

[KimH]

Sending prayers as you work through this time. You are amazing and strong!

[windchime]

I'm furious. I just got an email from my Mayo Pulm doc. I had asked him to consult with Rochester when I talked to him in person and then I sent him an email asking him to consult with Dr. Specks specifically. Here is what he said,

"The recommendations I gave to you were based on discussion with numerous colleagues in our department, and well as my surgery and rheumatolgy colleagues. Many of these doctors trained in Rochester. There is a clear consensus that she has no findings suggestive of Wegner's granulomatosis or similar vasculitic process. If patient would like a formal evaluation in MCR, we will be happy to arrange for such a visit."

Now Mr. Doctor man, and I use that term very loosely, WHY do I have inflammation in my lungs? WHY do I have granuloma in my lungs and spleen? WHY do I have nodules that come and go in my lungs? WHY won't you figure out what it is that I have instead of spewing BS back to me?

Doctors in general are beginning to irritate me. Is this Obama care? I just want to know what else can be done to determine what I have is. No one can seem to tell me that.

With all that said an email has been personally sent to Dr. Specks. I shouldn't have to do it that way, but they left me no choice. I don't mind the trip to Rochester, but if all he's going to do is review my records, what is the point? I think they need to think outside the box that has become their heads. OR get their head out of their collective a**es.

Sorry to rant, but as you can see I'm understandably annoyed.

[annekat]

Rant, Cindy, rant! I'm glad you sent a personal email to Dr. Specks, and knowing what a good writer you are, and how good at expressing all the details of your concerns, I'm hoping it will get his attention beyond his just going over your records. Since he has expertise both in WG and this other disease they seem to have dx'ed, I should think it would be an interesting case for him and one he'd like to have some input on. I don't know why you couldn't have both conditions, as many of us on here have more than one rare or AI condition (although I'd rather that wasn't the case, of course) . I hope I'm not being too idealistic in hoping he will take a interest and offer an opinion, and want to see you personally if you can swing the trip. Looking forward to hearing his response.

[pberggren1]

I'm crying for you Cindy When did you send the e-mail to Specks? I hope he replies to you soon. This Pulmy in Florida must be a real piece of work....GRRRR Maybe Batman has to come down there.

[windchime]

I'm crying for you Cindy When did you send the e-mail to Specks? I hope he replies to you soon. This Pulmy in Florida must be a real piece of work....GRRRR Maybe Batman has to come down there.

That was the pulmy from Mayo in Jax, not the local doc.