level of trust

[D.B.]

would you be okay with some apprehension consulting with your dr? i have seen 9 dr in past 3 years. switched primary once after deciding 1st one wasnt listening to me and treated me like i was only trying to get pain killers and had rude staff. new primary ok but not seeing him lately. done with old rheumy as he misdiagnosed and insisted i didnt have wegs. done w 1st ent also. he was so nice and attenive but called me enigma and said "someone will figure you out someday". really dr how about u? both these drs well respected in my area. on one visit i saw ent's intern 1st. he took one look at my nose and became visibly disturbed and lrft to get my ENT. he said nothing i can really do for you. another trip saw another ent w practice who scoped me said "ive never seen anything like this" go to boston. i was crying from pain and he sent me home w vicodin.
it just feels like so much wasted time seeing drs . when i saw new rheumy he said he felt like nasal issues where not connected to my other issues like arthritis. then he gets labs back and diagnoses wegs. i amjst not sure i trust this dr either but want to stary rtx asap which he is willing to do. i try to be optimistic but i still have concerns.

[D.B.]

also coming to realize that my trust has been influenced by ecperiences w my parents. my mom died from renal failure as a result of amylodosis. she suffered a very long time before anyone figured out her disease.and my dad passed from liver cancer which i believe his primary should have been paying closer attention to dads labs and what he prescribed.
thanks for listening. just being at this forum is helping me make some sense at what goes on in my head

[annekat]

also coming to realize that my trust has been influenced by ecperiences w my parents. my mom died from renal failure as a result of amylodosis. she suffered a very long time before anyone figured out her disease.and my dad passed from liver cancer which i believe his primary should have been paying closer attention to dads labs and what he prescribed.
thanks for listening. just being at this forum is helping me make some sense at what goes on in my head

I understand your feeling the way you do about docs. If they are inexperienced in a disease such as WG, they still act like they know everything and can just write you off as not having it, at their whim. And even such docs might be able to deal with it if they would just take the time to learn something and would spend enough time with their patients to get to the bottom of what is really going on. The descriptions I've heard on this forum of people getting adequate attention from their docs have been mainly from those who are seeing recognized Wegs specialists who practice in well-known centers for treatment of vasculitis. There may be exceptions to that.

[Alysia]

Hi Dina.
I am sorry for your loss of your parents. too much pain
as for finding a doc that you can trust, this is my list for the 5 years I have wg (aprroximately):
6 Gp untill I have found realy good one
4 lung docs. one was good but retired. the current one is ok and relating to me like a VIP
I cant remember how many ENT. I wrote about it elsewhere
http://www.wegeners-granulomatosis.c...-ent-docs.html
3 eye docs untill I have found one which is an expert in AI
2 wg-docs. I stayed with the one who was less greedy.
4 GI docs (because I have also colon-involvement)
maybe I forget some...
it takes time to find your reliable team of docs. don't give up on getting the best treatment availeble.

[Boonickel]

I know exactly what you mean. I got this diagnoses in Aug. 2013. Lost my father in March 2013 - Renal Failure, Heart Failure, Stage 3 Throat Cancer and my mom June 2011 to Liver/Lung Cancer...Can we get a break. It seems like everyone want to say that know what is going on. Take this to treat that and this to treat that. I just finished first round of Rituxan and now just waiting. I keep thinking and knowing something else is gonna "Flare" up!!

[D.B.]

hi alysia. i did read your post about ENTs. thanks for your support. just get so tired sometimes and scheduling appointments time off from wirk and then spend few mins w dr to know now eh have to move on. i was in my 20's when mom got sick and dudnt really get it. but w dad in my 40's and knew once i fiund out he was sick i would have to adocate for his care.
it is nice to hear tho that someone is treating you like VIP that uou are

[annekat]

Dina and Boonickel, I'm sorry to hear of the loss of your parents and the circumstances surrounding them. I lost my dad in 2011 right around the time of my WG dx, so was of course too sick to travel to see him in the hospital. He was not conscious, anyway. At 83 years old, it was hard to say what he died of, he'd had various health issues and things had been starting to shut down for awhile. He died peacefully. But I'll always wonder if he might have had something undiagnosed that they just didn't bother to look for.

Glad to hear from you, Boonickel, and glad to hear you have started on RTX. I know it takes some time to work, but I'd think it should take care of your swollen ears and any other Wegs involvement. Getting those things under control will be a big improvement for you. Keep us posted on how it goes.

[D.B.]

boonickel...sympathies hugs and thanks to you. hoping for rtx to help you. i worry too. i often hear at home "what is it now" csuse u bever know what old thing will come back or new issue will start

[D.B.]

hi and thank you annekat. so much sadness during difficult time for you. senior care often requires tough decisions due to patientlimitations.

[annekat]

hi and thank you annekat. so much sadness during difficult time for you. senior care often requires tough decisions due to patientlimitations.

True. My stepmom was attempting to care for him at home. Too much for her. He was in and out of the hospital a couple of times toward the end and then the third time hospice was decided upon, there at the facility. I'm just glad it was peaceful and he is now at peace. He wasn't himself anymore and I think it was the best thing. A common story, I'm sure. It it must be harder when your parents still have their wits about them and are aware of what is happening but powerless to do anything about it.