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D.B.
11-19-2013, 02:48 AM
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.
11-19-2013, 03:04 AM
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
11-19-2013, 05:04 AM
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
11-19-2013, 05:30 AM
Hi Dina.
I am sorry for your loss of your parents. too much pain :sad:
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.com/forum/hospitals-clinics-doctors-nurses/3233-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
11-19-2013, 06:14 AM
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.
11-19-2013, 06:41 AM
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
11-19-2013, 06:45 AM
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.
11-19-2013, 06:47 AM
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.
11-19-2013, 07:38 AM
hi and thank you annekat. so much sadness during difficult time for you. senior care often requires tough decisions due to patientlimitations.

annekat
11-19-2013, 07:51 AM
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.

D.B.
11-19-2013, 08:27 AM
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.
bless your stepmom for doing her best. perhaps common stoey it would be niceto think most leave us at peace. unfortunate not case w my dad. he was 80 but still active and golfing. he hid his declining health from me i now assume cause he was scared. he was not at peace as he left us but im sure he is now

annekat
11-19-2013, 08:40 AM
bless your stepmom for doing her best. perhaps common stoey it would be niceto think most leave us at peace. unfortunate not case w my dad. he was 80 but still active and golfing. he hid his declining health from me i now assume cause he was scared. he was not at peace as he left us but im sure he is nowIt may not be that most go peacefully, though they are now at peace. But I imagine it is fairly common for people to decline in the way my dad did, with people continuing to care for them until it becomes obvious that hospice is the best alternative. I'm sorry this happened to your dad when he was still doing well. My stepmom is now about 80 and also an avid golfer.

Debbie C
11-19-2013, 02:33 PM
It's sad to hear how everyone has lost a loved one and who knows if it could have been prevented.I also lost my father and took it very hard for a long time ,I think that is why I try to take care of my mom the best I can while she is here. I actually went to my old neighbors mother calling hours tonight. She is the same age as my mother and it's a scary thought.
But to your question about drs. D.B....don't settle for just anyone..no matter how many you go thru. I have gone thru alot too. But it is your life in their hands and they need to know what to do and still treat you with respect and not like you are just making things up.I am about ready to change by cardiologist since my last visit when he said I had anxiety and he wasn't even though the door or talked too me and he is one the best heart drs. in town but don't treat me like an idiot when I don't think he even knows about wg. Keep looking till your are satisfied.

renidrag
11-19-2013, 11:28 PM
I lost my Mother the day after diagnosis, she did not know I was ill. I think that is the way it was supposed to be. On another note for DB, please make an appt at Boston Medical Center and see Dr. Paul Monach. He is the leader of the Vasculitis Center and one heck of a guy. He saw me even though I am in remission just so we could have a history and he would have mine. You can also see Dr. John Stone at Mass General as he also is recognized in the field. Are you close to Boston? That really is where you need to be. Goodness I sound like Sangye did.
Dale

D.B.
11-20-2013, 02:20 AM
hi deb hugs to you and mom. thanks i need to take your advice. hate how get lazy and need to get best help for myself. ITA hate being treated like idiot. im well educated and can comprehend most of what i have researched about wegs. seems like some drs get frustrated by alot of questions about how each weg patient is so unique w presenting symptoms and lab work.

D.B.
11-20-2013, 02:29 AM
hi dale nice to hear from you again. i too believe things happen for reason. sorry for your loss. im 2 hrs from boston but family and friends are more than willing to drive me to appointments. scheduled first rtx infusion for 12/30. guess i will be sleeping into the new year lol im seeing dr fisher at MGH. i thought dr stone was ENT? thanks for dr monach recommendatio. is he at BU?

renidrag
11-20-2013, 04:20 AM
Yes, he is BU Medical and Boston Medical seem to be together somehow. Very happy with treatments from there and switched to Primary Care from BMC also. Getting old, now I remember, your from Western Ma.
Dale

D.B.
11-20-2013, 04:34 AM
Yes, he is BU Medical and Boston Medical seem to be together somehow. Very happy with treatments from there and switched to Primary Care from BMC also. Getting old, now I remember, your from Western Ma.
Dale
comforting to hear you are satisfied w care you are receiving. funny how i have been dow storrow drive MANY times and just noticed BU campus when going to MGH last month.

yes lil western ma town w population 16,000

annekat
11-20-2013, 05:01 AM
I lost my Mother the day after diagnosis, she did not know I was ill. I think that is the way it was supposed to be.
Dale Dale, my dad did not know I was ill, either, and I feel the same way, it is better that he didn't. But I do feel some sorrow in that even though he was pretty out of it, he might have been able to detect my presence at his beside in his final hours, had I been there, and would hate for him to think I didn't care enough to make the 1000 mile journey. I know, though, that that is the normal kind of sentimental working of the brain and mind that everyone goes through with such a loss. I did see him several months earlier when we were both in better shape, and think we both knew it might be the last time. Sad stuff that everyone goes through with parents and other loved ones.