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LisaD1
02-03-2016, 03:00 AM
Is there any way to consult with a weg specialist in pulmonary dep just to have your c scans reviewed without going for a visit (long distance to specialist). My local pulmonary doc is not a fan of complicated situations like mine. I checked the vasculitis forum and there is an expert pulmonary dr. in Jacksonville fl named Dr. Lee - has anyone used him? know him? Thanks in advance. (I don't want my major treatment to come from there - too far - but would like to see if he has any thoughts about recent cat scans).

Debbie C
02-03-2016, 03:40 AM
I really don't think any dr. will review your ct scans without a visit ( $$$ plus how would they know it is you over the phone ..hippa ) Isn't there another pulm dr. in your area ? Even if you go see this Dr. Lee one time maybe he can be a consult to your reg. dr. But if your pulm dr doesn't want to get involved in complicated situations, I suggest you move on to another....Good luck

LisaD1
02-03-2016, 03:55 AM
thanks debC - have to stay w/ local pulm because only 1 in area but if I'm willing to drive then there are others...but then would need help getting there which is never easy. I'm going to have to go to Mayo in Jacksonville i guess but would be helpful if someone else here has been to this dr.

jlove
02-03-2016, 04:08 AM
Hi Lisa - could you ask your rheumatologist to talk with Dr. Lee? My rheumatologist has done this for me a few times with other specialists. When it's doctor to doctor contact, they don't have to bill it as a visit. I work at a medical school and this is a problem for them financially - informal consults with other doctors are almost never billed and the financial managers think of this as lost income but I like to make the loophole work to my advantage. :)

LisaD1
02-03-2016, 05:04 AM
Hi Lisa - could you ask your rheumatologist to talk with Dr. Lee? My rheumatologist has done this for me a few times with other specialists. When it's doctor to doctor contact, they don't have to bill it as a visit. I work at a medical school and this is a problem for them financially - informal consults with other doctors are almost never billed and the financial managers think of this as lost income but I like to make the loophole work to my advantage. :)

thanks very much for that suggestion...I will try it thru the rhum...because there are a no. of autoimmune type granuloma lung diseases and pursuing both a bug type cause of my problems and an autoimmune type cause makes sense....e.g. Churg strauss, sarcoid, etc and I have found that rhums are better at looking for autoimmune causes than specialists in other fields...just my experience.

Titus3:2
02-03-2016, 05:10 AM
Dr.Augustine Lee performed a bronchoscopy on me in 10/2014.That was the only time I saw him.He performed it at the request of another pulmonologist at the Mayo Clinic.I have a trach tube,and was awake the whole time.He told me in his opinion that GPA was probably not active in my lung,like it was back in 2011.So,I took his word ,and went back to my local docs.He must have been right.My lung seems Okay.If you consult with the Mayo Clinic,it will take three or four days.Maybe more.You will have to see a rheumatologist there.Good luck.Keith.

LisaD1
02-03-2016, 06:40 AM
oh you mean i may have to stay there for 3-4 days? that is not good!

renidrag
02-03-2016, 06:54 AM
I think what Titus was saying was the phone consult would take three or four days. If you make an appointment with Dr. Lee, who is highly regarded here, perhaps you could have the prep done by your rheumy and the bronchoscopy by Lee. Although i don't understand why your Rheumy could not do the bronchoscopy and share the results with Dr. Lee. By the way I was diagnosed by Pulmonologist (lifesaver) after two bronchoscopes in two months. I do now see a Rheumy along with others that don't have anything to do with WG.
Dale

LisaD1
02-03-2016, 07:31 AM
wow you guys are so helpful thanks!

I could have the bronchoscopy (sp?) done here by my local guy but he said I had too much wheezing a few weeks ago and he wanted to wait...and also it is a cat scan assist I think and I have had 2 lung cat scans in past 8 months plus a sinus scan...and worry about radiation (probably dumb considering my lungs are a mess)...so yes I can probably coerce him to do the bronchoscope here or go to someone down the road who has a cat scan in his office who my pulmonary guy would feel better about I suppose. I feel I have to push for a two pronged approach to the problem because there is a slight worsening between the 2 cat scans. On top of it all I was prescribed singulair by urgent care where I went with an asthma attack and I see today that it is linked to, may cause Churg Strauss (a form of vasculitis) so now what LOL!

Titus3:2
02-03-2016, 08:15 AM
If Dr.Lee will do a phone consultation that would be great.If you get an appointment with Dr.Lee,he will still want to do lab work,Ct Scan,and Etc.Even though you have current lab work,and radiology with you.Rheumatologist,have pretty much taken over the final discussion on a GPA diagnosis or flare ups,and that is why he would send you to one of theirs.Pulmonologist use to be in charge,and are still in some places.Any second opinion I have been to at the Mayo Clinic either for myself or someone else, they always want to repeat testing.Even though ,you have current results.I meant outpatient when I said three or four days.If you have money,and time,you should go there.Call them.It could be months before you could get an appointment,but they have cancellations ,and you can get in earlier.Don't worry about radiation.I am very sorry you are having these problems.If I can help let me know.Keith.

Birdie
02-03-2016, 08:34 AM
I have had 2 lung cat scans in past 8 months plus a sinus scan...and worry about radiation (probably dumb considering my lungs are a mess)

Don't be concerned about radiation, the dose is not enough to cause a problem. Just keep doing what you're doing, making educated decisions based on sound logic.

LisaD1
02-03-2016, 09:50 AM
If Dr.Lee will do a phone consultation that would be great.If you get an appointment with Dr.Lee,he will still want to do lab work,Ct Scan,and Etc.Even though you have current lab work,and radiology with you.Rheumatologist,have pretty much taken over the final discussion on a GPA diagnosis or flare ups,and that is why he would send you to one of theirs.Pulmonologist use to be in charge,and are still in some places.Any second opinion I have been to at the Mayo Clinic either for myself or someone else, they always want to repeat testing.Even though ,you have current results.I meant outpatient when I said three or four days.If you have money,and time,you should go there.Call them.It could be months before you could get an appointment,but they have cancellations ,and you can get in earlier.Don't worry about radiation.I am very sorry you are having these problems.If I can help let me know.Keith.

That is so nice of you and thank you for all this insight. What a bummer - repeat testing of all labs and scans...I think my pulmonary dr. or someone warned me about this some time ago and I backed off from getting a consult. Now if I can pull off the phone consult with my rheumatologist - wow that would be great. I've just contacted some Orlando pulmonary ppl who claim to have exp with vasculitis of varying types and I think I will have them do the bronchosope first in the hopes they will sample the right stuff and not just bug hunt! If that result is scary then I'll have to deal with Dr. Lee in person it seems and repeat the whole mess. It's so strange because my problems started with rapid declining kidney function and now that is stable and somewhat improved and my lungs are very unhappy and my asthma is at its worst ever.

thanks again for helping me with this

LisaD1
02-03-2016, 09:51 AM
Birdie - thanks for reassuring me about the radiation - i have read scary things like too many lung scans can cause lung cancer etc. ah...the internet! google is not always your friend!

drz
02-03-2016, 10:50 AM
I know my treating doctors have consulted with experts from different places including Mayo. How they did it or how it was done I am uncertain? I know in some cases it was a professional colleague and most likely a friend. I know Mayo does a lot of this kind of consultation and advertise having such consultation services at hundreds of other clinics around the world but I don't know any of the details. I know Mayo does like to repeat lab testing but they have also accepted my prior recent testing from other facilities they trust.

LisaD1
02-03-2016, 11:02 AM
I'm going to pray they "trust" my tests if I end up needing them in person but I am definitely going to go for the consult approach first after I get the bronchoscope since that seems to be absolutely unavoidable. Scary but unavoidable..I hate being sedated etc and then waiting for results....but that's the only way to get to the end!