Post on behalf of Sperez7

[andrew]

Posting on behalf of Sperez7

My son is 24 years old has be diagnosed with Wegener's he has been in Sutter Hospital since November 17th 2016 still here currently. He is out of ICU but is still in pretty bad shape, he has an an air leak in right lung with a Chest tube place since November 29. He also has Aspergillosis infection in his lungs, hasn't been able to pass swallowing evaluation. So he has a G tube placed as of last week. Doctors involved are not on the same page as far as treatment going forward. Rheumatologist stopped him from further treatment of Rituximab after two seasons. Infectious disease doctor was treating him with voriconazole while he was out on leave for holidays, Rheumatologist doctor started him on two new fungal medications because she said his body wasn't responding to voriconazole. I am scared & a nervous wreck because if the doctors aren't treating him together what the outcome will be for his life!! Please help me with anyone in California who can help!!!

[Jaha]

I think it would be time for these doctors to have a consult via phone with Wegeners specialists from one of the larger facilities, maybe from the Vasculitis foundation website. The doctors on that website deal with a large amount of cases and might have some very good advice for treatment. I am wishing your son all the best for getting the best of care.

[annekat]

Posting on behalf of Sperez7

My son is 24 years old has be diagnosed with Wegener's he has been in Sutter Hospital since November 17th 2016 still here currently. He is out of ICU but is still in pretty bad shape, he has an an air leak in right lung with a Chest tube place since November 29. He also has Aspergillosis infection in his lungs, hasn't been able to pass swallowing evaluation. So he has a G tube placed as of last week. Doctors involved are not on the same page as far as treatment going forward. Rheumatologist stopped him from further treatment of Rituximab after two seasons. Infectious disease doctor was treating him with voriconazole while he was out on leave for holidays, Rheumatologist doctor started him on two new fungal medications because she said his body wasn't responding to voriconazole. I am scared & a nervous wreck because if the doctors aren't treating him together what the outcome will be for his life!! Please help me with anyone in California who can help!!! I used to live in California and know that one of the top vasculitis (Wegener's) doctors is Sharon Chung at the UC teaching hospital (UCSF) in San Francisco. She is a rheumatologist who would work with other docs there on the various issues in his lungs, etc. Alternatively, you might try the UC Davis teaching hospital in Sacramento. I have heard there is a vasculitis department or clinic there. I don't think just any hospital anywhere is equipped to treat Wegeners, nor any rheumy out of the phone book. The Vasculitis Foundation website has lists of known specialists who are available for free consultations or appointments. Sharon Chung is on that list.The Foundation itself might be able to help you find the best doctor in your area. I haven't been on their site in a long time. And the forum is good for referrals by patients in different localities, if the right people see this. Best of luck. There are other meds he could be on that aren't mentioned here such as Cytoxan and prednisone, which are very effective but like RTX, will lower the functioning of his immune system.This is unavoidable. Also Bactrim is the most common antibiotic we take regularly to prevent certain lung infections before they can start. It is complicated. Welcome to the forum, and I hope you will become a member so we can communicate more directly and you'll have access to the archives.

[vdub]

I would insist that your two docs do a consult. Sounds like they are working against each other. Also, one of them has to take lead to coordinate things and call the shots. I would recommend the rheumy for that position if the rheumy is the leader type.

[Alysia]

The best pulmy wg dr. To consult with, in my opinion, is dr. Specks in mayo.

[Sperez7]

Thank you. Slow is still progress your right. I will look into UC Davis.

[Gab122]

Hi sperez7,
I'm sorry your and your son are going through this.
I'm in Boston and don't know Dr's in cali but agree taht the Vasculitis Foundation (http://www.vasculitisfoundation.org/) is a good site to find one.
Wishing you the best! God bless!
Gab

[TommyG]

Hi Sperez7,
I do hope your son is on the mend. If UC Davis does not meet your needs, then you might consider Sharon Chung at UCSF. I've been extremely happy with the quality of care that I have received from her.
best wishes,

[whatthewhat]

I have heard great things about UCSF. The people I know best who are getting good care for WG in NorCal are seen by pediatric rheumys, unfortunately, so I don't even have second-hand knowledge about Dr Chung, but definitely in your shoes Dr Chung is who I would ask my docs to call. And I just cannot stress enough that the care he seems to be receiving is NOT adequate. This disease can move wickedly fast especially in younger people, and to have inexperienced docs who are second-guessing each other would make me very nervous.