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View Full Version : Do you have a Wegener's Specialist?



Jack
07-31-2010, 06:21 AM
As title - is the doctor in charge of your care what could be termed a "specialist" in treating Wegener's or is he (or she) a more general Rhumy or something?

Hammy8241
07-31-2010, 06:42 AM
General i think but not asked actual question. Nice legs though!

Jack
07-31-2010, 06:44 AM
Nice legs though!
Should I start another Poll? ;)

Hammy8241
07-31-2010, 06:53 AM
Should I start another Poll? ;)

No Jack ...... all mine......................

pberggren1
07-31-2010, 07:06 AM
Even though I am the only Wegs patient that my Internist/Nephrologist sees he is still classed a Wegs Specialist because he has been involved in the diagnosis and treatment fo hundreds of Wegs cases back in the UK and he keeps in close contact with his fellow doc buddies back in the UK and keeps on top of the latest research. I am very blessed to have him. He might be getting another Wegs patient soon though as I have found another fellow Weggie right here in Swift Current.

Jack
07-31-2010, 06:58 PM
Do you get 10% agent's fee? ;)

pberggren1
08-01-2010, 08:05 AM
Do you get 10% agent's fee? ;)

I wish I did Jack.

JanW
08-01-2010, 11:18 PM
Your doctor Jayne has certainly been mentioned here at the conference, Jack. Both my rheumy and ENT are WG experts though neither operates out of a major vasculitis center. They are both in major teaching hospitals and are academics as well a physicians, which I think is an important distinction for our US members. When you get someone who is in private practice in his own little world and not keeping up with changes in the standard of care in this disease you will be in real trouble.

Langford says that if a rheumy has five WGs on their current caseload that's pretty astounding. Docs in vasculitis centers have maybe 100 on the books and have seen hundreds in their careers.

pberggren1
08-02-2010, 04:27 AM
My wegs doc has just me but has seen hundreds before.

Jack
09-08-2010, 07:47 PM
I think that the Poll, such as it is, shows that those consulting a specialist are in the minority. This is not such a good result considering the importance many of us attach to this aspect of treatment, but it just reflects the facts of life - specialists are few and far between and it is not in the power of most patients to get to see one. Are we in danger of making things worse by stressing this aspect all the time and perhaps making people feel guilty or inadequate if they are not able to comply? Or is pressing the point justified because it might save someone's life? After all, we have seen members die with a suspicion that poor standards of treatment may have contributed.

In a similar way, are we piling on pressure by telling people that they should be eating more X, Y and Z and taking drugs A, B and C while avoiding................? Or is this all good and welcome advice? Sometimes it is hard to steer the right path between helpful and judgemental even when you have the best of intentions.

elephant
09-08-2010, 08:01 PM
When I was first diagnosed back 2008 the first question was," Who is a good Rheumatologist that see's many Wegeners patients?" My doctor just said we just send everyone down to this one hospital 3 1/2 hours away. Then he sent me to a local doc that I have now, but there was no difference between my docs ( my local and the one 3 1/2 hrs away).
I felt my care was kinda weak at first, so after a whole year of not seeing a Wegs specialist I decided to see one. I was on this site and other WG sites to see who is everyone going to ...to get good care for their disease? Of course I decided to do this after my WG got worse.
So yes I do feel guilty that I didn't see one sooner because I believe I wouldn't have gone through all these surgeries if I had the proper care in the first place. But in retrospect, I can't blame my local doctor because she was being really conservative ...just gave me prednisone 60 mg at first, but I kept telling her I need something else...I could feel myself getting worse.
Even though I am a RN, I felt like I should of been on top of this...but I am thankful for this forum. Many of you have helped me and I appreciate the nagging from others. I think many of you have saved lives because of the nagging!

Sangye
09-08-2010, 11:39 PM
I think that the Poll, such as it is, shows that those consulting a specialist are in the minority. This is not such a good result considering the importance many of us attach to this aspect of treatment, but it just reflects the facts of life - specialists are few and far between and it is not in the power of most patients to get to see one. Are we in danger of making things worse by stressing this aspect all the time and perhaps making people feel guilty or inadequate if they are not able to comply? Or is pressing the point justified because it might save someone's life? After all, we have seen members die with a suspicion that poor standards of treatment may have contributed.

In a similar way, are we piling on pressure by telling people that they should be eating more X, Y and Z and taking drugs A, B and C while avoiding................? Or is this all good and welcome advice? Sometimes it is hard to steer the right path between helpful and judgemental even when you have the best of intentions.
Seeing these numbers today literally made my stomach turn. Having been under the care of both regular rheumys and a Wegs specialist I know the former is not adequate care. I see a number of people in our group who could have access to a Wegs consultant via their doc but just don't do it for one reason or another. I don't understand that. I see people flying around the world for vacations but unwilling to fly to another country to see a Wegs doc. I don't understand that, either.

My lama was instrumental in getting me to move to Maryland, which led to my getting to JHU. I recently thanked her (for the zillionth time!) and she said, "They are the best, and you deserve the best." So does everyone. She and I know a guy in Colorado with lifelong Type I diabetes. His kidneys have zero function and he's on dialysis. We have begged him to get to JHU. He makes excuses. I think denial can run very deep, no matter what the illness.

As far as the effects of nagging, I will always choose to err on the side of saving lives. I'm a walking example of what happens when a Weggie has inadequate care, and I feel it would be selfish of me not to share what I've learned. I'd rather have someone upset with me but still alive.

JanW
09-09-2010, 01:40 AM
I think Jack raises a very interesting question. I do think that there is a gap (sometimes quite a wide one) between truly inadequate care and care that is not taking place under a WG specialist. Any of us who have spent time reading on this board can see posters who are getting the total runaround from docs who are way out of their depth, and any of us can recognize posters also in the grips of denial. At the same time, I have seen posters who have docs who have a few WG cases who are absolutely getting the standard of care, and who improve. Could that doc be out of his depth if this patient then presents with unusual or difficult symptoms? Absolutely. However, that may never happen, and I also think that we have to allow that some of our members see the doc who is a large teaching hospital practice who is also not afraid to pick up the phone and consult with colleagues when necessary. I think that they can do that at the point that they cannot manage the patient's care vs. picking that phone up when confronted with the WG at the intake visit.

Let's remember that many of the docs who are now the experts in this disease didn't spring into 'expert-dom' out of whole cloth. Someone was Patient #1 and someone was patient #50. Ulrich Specks gets teased (by the rheumys) at the VF Symposiums because *somehow* he was the rare pulmy who took an interest in WG and made it his specialty. My ENT is a special but we WG patients probably don't constitute 20 percent of his practice, which is still general ENT. New centers (such as the ones at Cedar Sinai in LA or University of Utah) are being established with new "experts" who are by logic much less experienced than Dr. Hoffman or Dr. Seo.

It is always a fine line that more 'senior' members walk here between imparting knowledge and pretty much telling people what to do ;-). I know in the early days I really struggled to accept that line, and I suspect that if I had been sicker there would have been several interactions here that would have driven me away forever. But, as we are not a collective speaking with one voice, I think that people have to say what they want.

Sangye
09-09-2010, 02:19 AM
I just called the VF to ask if the VF docs in one country consult for free on cases in another country. Yes, they do.

As far as Canadians who live too far from Canadian Wegs specialists, she said they are VF consultants who will consult with your doc for free.

She also felt it was extremely important to have a Wegs specialist on your case, whether it's your own doc or a VF consultant.

Jack
09-09-2010, 02:36 AM
The reason I resurrected this thread was because I feel that I am sometimes in danger of stepping over the boundary from simply giving advice to preaching.

You must see a specialist.
You must not take Ibuprofen.
You should rinse your nose.

I can hear myself now and should perhaps try to imagine how it will be received by new patients. They probably think that they can't do a thing right and already have more than enough to deal with.

I'm not sure that there is an answer to any of this, I just raise it as a point of discussion.

JanW
09-09-2010, 03:05 AM
And again, I applaud you in doing so, Jack.

I believe that you always run a risk in being too hard line and too strident, although this is an area in which many of us fail. If I am so hardline with you that you cannot even start to hear my message, you tune out, and you don't come to me when your bad rheumy is telling you something totally insane, I don't know if that helps you OR me.

Marta in another thread drew an EXCELLENT parallel between this and breastfeeding. I, like she, couldn't breastfeed my two, although they were fed pumped breast milk almost exclusively until each was a year old. I was on a parenting board that was a very close community (like this one) and I will never forget someone who knew of my struggles in detail saying something along the lines of "it's too bad that you didn't consider the importance of bonding when you decided to give up. It's not only about the milk." I shed some tears that day -- and also gave up that board for a long time. To her I'm sure this wasn't even a judgmental comment, but if you flip that to WG and someone saying, (for instance) "I know you've been in remission and your bloods are fine, but really, it's too bad you don't care enough about your future to visit Mayo" well -- you can see the comparison.

Sangye
09-09-2010, 03:07 AM
It's a valid point, Jack. I come from the place of not having had any help at all-- no support group, no Wegs doc, no idea that there was a VF, a lousy local rheumy who didn't tell me anything about pred, a Mayo doc who wasn't a Wegs specialist but I didn't know it, etc.... So to me I think "What would I have wanted?"

Sangye
09-09-2010, 03:13 AM
To her I'm sure this wasn't even a judgmental comment, but if you flip that to WG and someone saying, (for instance) "I know you've been in remission and your bloods are fine, but really, it's too bad you don't care enough about your future to visit Mayo" well -- you can see the comparison.
Okay, that's upsetting to me. I've never heard anyone on here say something like that. If it's directed at me (being the biggest nag to see a Wegs specialist) then I don't think it's fair.

This subject is making me mad, so I'm not going to comment on it anymore.

elephant
09-09-2010, 03:25 AM
:hug3:My last two cents is ," I'm still going to nag because I care." That is why people come to this forum because we are talking about our experiences openly and we have some really knowledgeable people on this forum. That is why I am here.

Hammy8241
09-09-2010, 03:48 AM
IMO visitors to this site are often quite desperate for information and to try to understand this disease. People know how bad they are feeling having just been diagnosed and it can be scary to see just what WG can do to us.

This said, I suspect that universally, people welcome the information/thoughts/opinions of those who have already experienced can offer, to light to the many dark rooms each Weggie enters as WG throws something new at us.

Again whilst many of people may have their senses dulled by medication/WG, the one thing I have noticed is that the people who post here are generally sound of mind (agruable :wink1:) and quite able to decide which, if any info they use.

Many newbies have luckily, had their diagnosis early and as such have not had to suffer some/all of the horrible spikes of WG. Like myself, early diagnosis, quick treatment, rapid improvement – Hey, what more can a person want from their Dr? Now I know that I’m not in remission or even 80% of where I was before the onset, but I can work, support my family and as long as I obey the rule of do a little then rest, I have a good quality of life. So long as I can see progress, no mater how slow, I can not see the reason to change my Rheumy. Should things go downhill however, then I will be the first to push for a weggie expert.

So, whilst you may suggest/nag people to see a WG specialist and you may be disappointed so few do, please understand that it is firmly installed in our brains and will be used when required.

You guys have given us so much with your experiences. The knowledge here is not easily available elsewhere, as it is from real life, and that knowledge is invaluable. Keep it up all.

Jelly babies rule. OK:biggrin1:

pberggren1
09-09-2010, 04:36 AM
Well Sangye, I hate to see you mad. I can personally say I enjoy all of your posts and find them quite informative. I know that you are a very genuine person just trying to help others.

I would love it if everyone could have a Wegs specialist. But unfortunately that will never happen because of geography and finances, etc. But of course the next best thing is having your local doc consult with a Wegs specialist from the VF.

I am very blessed to now have a Wegs specialist. I can see other people that don't have a Wegs specialist and being very upset about what is going on with them and not getting the answers they want. But even the Wegs specialists don't know everything and don't know what to do all the time. Sometimes they are just making an educated guess.

Treating Wegs is not a science but is an art.

Jack, Sangye, and whoever else that has ever nagged please keep on nagging. But please keep in mind that not everyone is open minded and is able to travel to see a Wegs specialist.

I have always liked the advice of Sangye and Jack. I see you 2 as wise old veterans on this site.

I hope this helps. I was just winging it.

JanW
09-09-2010, 04:46 AM
I don't think that you, Sangye, are a bigger nag that Jack or Elephant, or Phil or others. Many on here nag about getting a wg specialist. I certainly wouldn't be where I am today if my surgeon wasn't a WG specialist.

I am only pointing out a way in which some advice might be perceived by some people, and I am not singling out any single poster. I will also own it and say that I might be the only person who has ever felt preached to. I agree with Phil, that everyone may not be open minded, able or willing to see a WG specialist and I always try to keep that in mind, while, at the same time, being (in my view) very aggressive in commenting about treatment plans, meds, symptoms, etc.

Hammy8241
09-09-2010, 04:47 AM
Well Sangye, I hate to see you mad. I can personally say I enjoy all of your posts and find them quite informative. I know that you are a very genuine person just trying to help others.


I have always liked the advice of Sangye and Jack. I see you 2 as wise old veterans on this site.

Agreed Phil except the word highlighted in red ... you are on your own...... More flowers on way!!!!!:biggrin1:

pberggren1
09-09-2010, 04:48 AM
Agreed Phil except the word highlighted in red ... you are on your own...... More flowers on way!!!!!:biggrin1:

Ya, whatever.

Jack
09-09-2010, 04:52 AM
OLD!

How dare you? :predrage:

I'll have you know that I'm only 55. (Although that is about 85 in Wegs years :wink1:)

You think you are safe just because of a bit of water between us?

DEE
09-09-2010, 04:53 AM
keep nagging at me i would not have done half the things that i should have done without a gentle push from you guys:thumbsup:

Hammy i need a lorry load of jelly babies just now :tongue1:

Jack
09-09-2010, 04:56 AM
I have to admit that even I have needed prodding a bit before doing the right thing.
Thanks all. :thumbup:

pberggren1
09-09-2010, 04:57 AM
OLD!

How dare you? :predrage:

I'll have you know that I'm only 55. (Although that is about 85 in Wegs years :wink1:)

You think you are safe just because of a bit of water between us?

You are so funny Jack. They do call that water the pond, don't they. A pond sounds like something you can just wade through. I doubt you will find me though Jack, Canada is a big country.:tongue1:

marta
09-09-2010, 04:58 AM
Sangye, please don't stop! I would have pulled my hair out - and lord knows, I don't have a lot left to pull - if it wasn't for you and Jack and the rest of you on here. I totally know that all the stuff you talk about is stuff that could save our lives, fragile little things that they've turned into. Never, never stop!!!!! I also know that everything you say to us rookies is from experience and the help us avoid pitfalls that you might have experienced. I know it comes from a place of love.

I hope that I didn't start this with my little pred-freak out yesterday.

I was just feeling so helpless and defeated about getting a WG Specialist on my case when I had my rant. It's just not feasible economicaly, or physically, or in any other way for me to see someone regularly when that amount of distance and cost is involved or to root up my family and move to a different location. I am glad that my doc can consult with a weg specialist on my behalf and I will let her know on my next visit in less than a month.

As far as the other advice, please, please that is totally necessary. That's also stuff that people CAN do. It's just the getting a WG Specialist thing that make me feel like I'm dropping the ball, not for lack of trying, but us Weggies being a rare breed makes The Weg Specialists an even rarer breed, and how many Weggies have you met face to face?

I thank you from the bottom of my heart for all of the wisdom you so willingly share and would be way worse off had I not found you. Please don't stop.

Hammy8241
09-09-2010, 05:27 AM
Hammy i need a lorry load of jelly babies just now :tongue1:



453


Always here to please Dee. Enjoy:drool:

DEE
09-09-2010, 05:54 AM
THANS HAMMY BEEN A ROUGH DAY SORRY FOR GOING OF THREAD JUST HAD TO SAY THANK YOU ALL FOR OUR SUPPORT TODAY :thumbup: