Words from a friend of Al's

[HopeinTN]

I think him about him often and how I miss his wisdom. Thanks so much for sharing.

[mr.g]

Anne...this is Ev, mr.g, from Federal Way. In the discusion about Al, you mentioned there "aren't any Weg specialists in Washington." I am a member of Group Health and my specialists are in Tacoma. I think my Rheumatologist is board certified and a Weg specialist. I will check with her. Anyhow, I pass this information along in the event you are ever interested in a different doctor. I will ask her if her training makes her a specialist with Weg.

Thanks for forwarding the info on Al.
Ev

[annekat]

Anne...this is Ev, mr.g, from Federal Way. In the discusion about Al, you mentioned there "aren't any Weg specialists in Washington." I am a member of Group Health and my specialists are in Tacoma. I think my Rheumatologist is board certified and a Weg specialist. I will check with her. Anyhow, I pass this information along in the event you are ever interested in a different doctor. I will ask her if her training makes her a specialist with Weg.

Thanks for forwarding the info on Al.
Ev

Thanks, Ev. I'd appreciate knowing more about your doctor. However, I don't belong to Group Health, though I suppose I could join. I'm on Medicare and might need to join a Medicare Advantage Plan under Group Health, if there is one. I'll look into it.

The term "Wegs specialist" has come to mean, on this forum, someone who has treated something like 100 or more Wegs patients and is probably listed on the Vasculitis Foundation website as a specialist. However, if one cannot get to see one of those, I can't believe that there are not some others who are capable of treating Wegs. After all, even the specialists had to start somewhere. And any doctor can consult with those considered specialist. In my case, I don't even have a rheumotologist, and if I get one, I'd like it to be someone with at least some Wegs experience and knowledge who is also willing to consult with the more experienced specialists. Al seemed to trust his doctor who is a nephrologist, and I don't know what his Wegs experience is. I don't have kidney problems, so he'd be out for me. But two others besides you have given the names of rheumies they see and trust in the Seattle/Tacoma area. I just haven't gotten around to following through on this. I would very much appreciate if you would mention my case to your doc and see what she would suggest, and also tell her I'm in Olympia. Who knows, there could be someone closer to home than I think. And a trip to Tacoma would be easier for me than one to Seattle.

Thanks, again.

[drz]

I think what was bugging me was the irony of life's mysteries. Al and I had a lot of similarities in our Wegs cases but he had less damage from it, was younger, smarter, more knowledgeable, didn't have the extra burden of diabetes, was stronger, had had a better recovery in that he could still work on a limited basis, and he seemed more vigilant in caring for himself. Yet he succumbed to an infection that probably didn't appear that serious at first. I am still here and doing Weggie good at the moment, so I am not sure what to learn from this or take away except life is precious and uncertain and we need to enjoy it as much as possible. I bet Jack could have shed some wisdom on this if he were here and miss his counsel too. I just watched a great movie with Tom Hanks and Sandra Bullock where it was said "We try to make sense out of what doesn't make sense" so maybe that is the lesson to learn here.

[mr.g]

Hello again. I will email Dr. Warner and ask her for a "list" of Weg specialists in the Olympia area. One good thing about Group Health is the fact I can email any of my 13 specialists and they email back. I will email tonight.


I have to be in Chehalis, my home town, early Wednesday AM. I will pass through Olympia around 8:30. I will buy the coffee if you feel safe enough to meet for a short meeting, not too far off the freeway????

Ev

[renidrag]

I did not think of it at the time of Al's death but I did google him after this thread started. What an amazingly talented and intellectual individual he was. I knew he could write well just from the wording and style of his posts. What we had in our midst was one of the "celebrity types" we needed to carry our flag. Al's obituary is extraordinary and I urge you to read it. I don't know how to download but google his name and it is right there. Also thanks to those of you who sent condolences.
Dale

[annekat]

Hello again. I will email Dr. Warner and ask her for a "list" of Weg specialists in the Olympia area. One good thing about Group Health is the fact I can email any of my 13 specialists and they email back. I will email tonight.


I have to be in Chehalis, my home town, early Wednesday AM. I will pass through Olympia around 8:30. I will buy the coffee if you feel safe enough to meet for a short meeting, not too far off the freeway????

Ev

Thanks, Ev. A list that's mainly Tacoma and Seattle would be fine, too.... there may not be any in Olympia depending on her idea of a suitable specialist. My ENT and pulmy don't seem to think there are any suitable rheumies here.

As for meeting Wed. morn., it is a great idea, but too early for me. It takes me quite a while to get moving in the AM, and then I have to get motivated toward making pottery, which is what I do to supplement my SS disability. I sell it on the weekends at the Olympia Farmers Market. I hope there will be other opportunities for us to meet!

[mr.g]

Here is Dr. Warner's answer. I fear not much help.
Ev

------------------
Everett,

Good to hear from you!
Your friend can find rheumatologist near Olympia or anywhere else.
Its simple.

Go to www.rheumatology.org - our professional website and
chose "find a member",
then put state "WA" and any city that you want.

I hope that you will not need that wheelchair soon!

Warm regards,
Natasha Warner, MD.
------------

[annekat]

Here is Dr. Warner's answer. I fear not much help.
Ev

------------------
Everett,

Good to hear from you!
Your friend can find rheumatologist near Olympia or anywhere else.
Its simple.

Go to www.rheumatology.org - our professional website and
chose "find a member",
then put state "WA" and any city that you want.

I hope that you will not need that wheelchair soon!

Warm regards,
Natasha Warner, MD.
------------

Thanks, Ev, for trying. I think the consensus on this forum is that there are lots of rheumatologists out there but not many who have any experience or knowledge about Wegs, since they haven't encountered it or been trained in it. Many of them really focus on things like arthritis, which is very common. I've heard through my PCP of one here who told a Wegs patient that he could not help him. Al would have had something to say about this.

[Debbie C]

drz.I believe that from the day we are born our life is planned out and no matter what we do,how well we take care of ourselves,watch what we eat,,whatever the case,when its our turn to go there's nothing we can do to change it.