Who Does NOT Have A Rheumatologist/Weg's "Specialist"?

[TOBEY32]

I do not. I have a Lung/Immune doc and a Kidney doc.
I'm back and forth w/ my docs, and it's not always a bad experience, but during yesterday's kidney vist he was out the door before I even finished asking my questions. Don't feel I can say much as he's seeing me on a charity basis - so I let him go.
As I've mentioned before I know of no local specialist or local rheumy that takes a charity case.
I can definitely see how one can't allow any doc to call all the shots and you not have a say - especially if you don't get an answer. I can only hope if one doesn't the other will.
I can see, also, how doing all I can ON MY OWN (diet, exercise, etc.) is as necessary as any doc.

[Al]

I do not. I have a Lung/Immune doc and a Kidney doc.
I'm back and forth w/ my docs, and it's not always a bad experience, but during yesterday's kidney vist he was out the door before I even finished asking my questions. Don't feel I can say much as he's seeing me on a charity basis - so I let him go.
As I've mentioned before I know of no local specialist or local rheumy that takes a charity case.
I can definitely see how one can't allow any doc to call all the shots and you not have a say - especially if you don't get an answer. I can only hope if one doesn't the other will.
I can see, also, how doing all I can ON MY OWN (diet, exercise, etc.) is as necessary as any doc.

This is not a good situation, David. At the very least, you need a doctor who will "chair the committee", to take charge of the program. This you do not seem to have. I also have both a kidney gut and a lung guy, but the nephrologist owns my case--he's the "head carpenter" on the remodel project. I do not care if your gut took you pro bono; the fact that he took you at all means that he must give you his full attention. Of course he will juggle you along with everything else--he has mouths to feed. Still, he is obliged to answer your questions. We on the forum will do our best along these lines, so you are not quite all on your own. Still, our best is not a replacement for real medical care. Please let us know what happens.

Al

[NicShaf]

I don't have a "Wegs Specialist" but I have a really good local rheumy who I trust a lot and has about 30 years of experience. I do think you need someone on your team who is specifially trained to treat Wegs. I think many of us have multiple doctors on our team,but the main one is a good rheumy. I have a pulmonary specialist and an ENT, plus my GP.
What area do you live in? Maybe a member on here can help you find a good Rheumatologist?

[gmyi]

I had a rehumy in the hospl ital but i noticed that she was making me her's case study and she put me in unnecessary tests
so i stoped visiting her but I have an excellent nephrologist and a good internal doc and i am in remission for 5 years

[Dirty Don]

Specialists ARE important in this kind of disease, but understanding and a desire to learn along with you are much more important...takes the whole community to resolve this screwy disease!

[Sangye]

I don't agree that understanding and a desire to learn are more important than having a Wegs specialist. I've had great doctors in the past who had those characteristics and I nearly died under their well-intentioned care. I got a lot of damage, too. It is not safe to be on anyone's learning curve if you have Wegs.

David, I agree with Al that even though this doc is treating you for free you still deserve excellent care. (And legally there is no difference in his obligation to provide that, regardless of what he charges) I suggest that you sit down with him and express your concerns. His reaction will tell you if you can safely remain in his care or not.

[Dirty Don]

I don't agree that understanding and a desire to learn are more important than having a Wegs specialist.

Tell that to the people on here and elsewhere who are seeking help outside their abilities to reach out whether it be monetary or geographic...who don't have the 'good' docs to appease their situation...no, it takes a willingness to learn and teach and absorb the evidence before one can make progress...you are lucky Sangye, as am I, all things considered, most people on here don't seem to have those advantages...

[Sangye]

I was one of those people. I got filled with uncountable numbers of blood clots, got repeat blood clots, was taken off pred too fast and was damaged, was kept on ctx for 8 months while it destroyed my bone marrow, was kept on mtx 2 months while having a severe allergy to it, and a much longer list. All because I didn't know about Wegs specialists.

I realize I nag people to get to Wegs docs. I don't do it without awareness of limitations of time, money, etc... and I never forget what good fortune I have in being able to go to JHU. However, every single death we've had in this group (with the exception of Jack) has been the result of someone getting inadequate care. In 3 years on this forum (and a concurrent 2 years on another) I've seen countless people with controlled or mild disease suddenly go south or develop a bizarre complication. If they don't already have a Wegs doc in place they wind up scrambling for one under the worst possible circumstances. There is a long line of people who have been damaged by that.

It's not like I've had Wegs docs on my front porch either. In AZ I had to travel 3 hrs one-way to get to Mayo, even when I was in extremely bad condition and on oxygen. We'd have to load up the car with a pile of oxygen tanks to make it through the day, and cart them around Mayo so they wouldn't explode out in the hot car. It was always terrifying because the one highway between northern and southern AZ would often be closed without warning for many hours. I had to get friends to take the entire day off work just to drive me there. Being treated at JHU means driving 1.5 to 2 hrs each way, paying expensive tolls and expensive parking. This is all quite extreme hardship for me--financially, physically, and emotionally. But I have walked on the other side of the fence and refuse to do it again.

Not everyone is able to travel to a Wegs center, but pretty much everyone is able to have a VF consultant involved on their case, even internationally. I checked with the VF on this. Also, there are organizations that fly people to medical centers for free. There is a LOT people can do to get great care even if they have financial or geographic limitations.

[Al]

With all respect to Sangye--and I do agree that it is best to have a Wegs specialist leading your team--I do believe that a doctor who is willing to learn is vitally important. Part of this idea has been in me since an early age: My mother was a school teacher for 44 years, and a very successful one, because, I think, she was also a lifetime learner. The fact is that there is no subject that even the best experts in the world know all about, though they often pretend that they do. Yes, your Wegs specialist likely knows more about the subject than you do, but if you know, say, 3 percent of what there is to know (at present), he or she might know 6 percent. And there are some literally vital things that you know best--like the state of your body. In all cases, there is still a world of information that he or she or perhaps no one in the world knows. Present knowledge is woefully a thimbleful of a great ocean. We all, including our doctors, need a little humility in the face of our dreadful ignorance. David is in Tulsa, some distance from a major vasculitis center, without the ability to travel much. Any local he is likely to find is not likely to have a great deal of experience treating weggies. Yes, his doctor can consult with a VF expert, but to do so requires one willing to learn, to put aside any God complex. Of course, I realize that we are all different. Some people would prefer to pretend that their doctors are deities. Not I. Give me a doctor, or a teacher, or anyone else, with doubts. Give me a seeker, not a preacher.

Al

[Sangye]

With all respect to Sangye--and I do agree that it is best to have a Wegs specialist leading your team--I do believe that a doctor who is willing to learn is vitally important.

Al

That's the thing-- I never said it wasn't an important quality. I disagreed that it was more important than having a skilled doctor.