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ArlaMo
02-21-2012, 07:22 AM
Yay, so glad I can finally get back on the forum. I haven't been able to access it for at least three weeks. Whew!

So here's my issue. I have a great internist here in town - love him! I also have a nephro, an ENT and a pulmo doc here locally. All very good. There is, however, no rheumy in town. When I was first diagnosed, I traveled to Spokane (about 3 hours away) to a rheumy up there. But then, on the great advice of Sangye and others here on the forum, I went to Cleveland Clinic and saw Dr. Langford. She directed my rituxan infusions and I'm SO glad I went.

BUT, my docs here are having a hard time reaching her. Both my internist and nephro tried to reach her back in Oct/Nov about some issues with my maintenance meds and after three weeks, neither one had heard from her. They both want me to go back to the rheumy in Spokane or choose another rheumy close by. I do NOT want to go back to Spokane - I was only the 6th Weggie the doc had seen and in the end, I was not comfortable at all with him or his office (after 4 requests, they NEVER sent my records to CC when I went out there!) And I'm not sure I want to go to another rheumy who is not a vasculitis specialist.

Reality is, I probably can't get back to CC more than once, maybe twice a year, due mostly to travel costs and scheduling with all my kids, not to mention our insurance pays horribly for out of network providers. And although my docs here are very willing to work with CC long distance, it doesn't seem to be working out very well. They've both told me (internist and nephro) that they're uncomfortable with no weg specialist to guide them in treatment, which I totally understand.

So I'm not sure what to do...

*keep going once a year to CC and have my docs be uncomfortable with the situation
*find a random rheumy in the NW (anybody have a suggestion - maybe Seattle or Portland area? I know there are no good ones anywhere close)
*see if I can get in to the vasculitis center in Salt Lake, which is a much more reasonable distance to travel. Plus my daughter was just accepted to college in Utah, so I'd have an excuse to visit often :tongue1:

pberggren1
02-21-2012, 07:36 AM
This is a horrible situation to say the least.

Have you tried to contact Dr. Langford yourself, say by e-mail?

SLC in Utah sounds more reasonable. Dr. Koening there sounds good.

I hope you can get this resolved soon. How are you feeling overall?

drz
02-21-2012, 08:23 AM
I think Phil has very good advice on this issue (as usual). I would try contact her directly to see if she is willing to play that role. If she is not able or willing, then try SLC to see if they are. Tie it in with a college visit so nothing lost if it doesn't work out. It is a tough call sometimes between having a treating local doctor who is more available and accessible and having treatment from a recognized expert with a long distance relationship that is less available when you need them. Few of us are lucky enough to have an expert locally who is available for all our treatment needs. Those ambulance rides and medical care van rides are really expensive when you are too sick to get to the experts any other way.

Sangye
02-21-2012, 09:10 AM
I agree that a talk with Dr Langford is in order. It may be that her front-desk people aren't giving her the messages. If it can't be resolved, then I suggest SLC. You can find a local rheumy to work with the one at SLC. I don't recommend being without a vasculitis specialist if you can possibly make it work.

I know Dr Seo only sees some patients once or twice a year. They live across the country and coordinate with their local rheumys. It can be done-- just need the right combo of docs involved.

ArlaMo
02-21-2012, 11:09 AM
Hey Phil, thanks for asking. I think I've kind of plateaued, if that makes any sense. Definitely so much better than a year ago and leaps and bounds better than two years ago. BUT...if I compare to three years ago, it's kind of...meh. It's hard not to want my old self/body back. But I'm alive and in remission, so, definitely grateful for every day :smile1:

The long distance relationship is what I thought we worked out with Dr. Langford. She was pretty responsive in helping my local docs get the rituxan set up and with getting a taper schedule and maintenance med schedule. And then it just became impossible to reach her. I really, really like her...

Definitely need to ponder this a bit more.

pberggren1
02-21-2012, 11:12 AM
I sure hope you can get Dr. Langford back. But you need a doc that will communicate with you long distance like that. I know many that like Dr. Langford as well. She seems very nice from the videos I have watched of her.

elephant
02-21-2012, 11:17 AM
I would stay with her, can you see her every 6 months? I see her once a year, and I really like her. If I had to,, I would see her twice a year. My local Rheumy is very good and I can work with her and she is able to get a hold of Dr. Langford. I think they know each other...

Al
02-21-2012, 11:21 AM
Hey Phil, thanks for asking. I think I've kind of plateaued, if that makes any sense. Definitely so much better than a year ago and leaps and bounds better than two years ago. BUT...if I compare to three years ago, it's kind of...meh. It's hard not to want my old self/body back. But I'm alive and in remission, so, definitely grateful for every day :smile1:

The long distance relationship is what I thought we worked out with Dr. Langford. She was pretty responsive in helping my local docs get the rituxan set up and with getting a taper schedule and maintenance med schedule. And then it just became impossible to reach her. I really, really like her...

Definitely need to ponder this a bit more.

I agree with the other posters. True, you might find a rheumy in seattle who has dealt with many more Weggies than the guy in Spokane. The again, you might find a dud, in which case you would be as bad off, only many hours from home. SLC is a day's drive from you, but that might not be so bad (at least, if you can stay awake through southern Idaho's sagebrush), especially if you have a kid there.

Al

Nancy-S
02-21-2012, 01:34 PM
Why not see Dr. K. just for fun. There's no commitment and it's relatively inexpensive. The U of U staff was excellent. When I need to speak with a doctor, there's always a resident available to return my call within 30 minutes.

Dr. K. is supposed to be one of the best. I think I was cheated, mostly because of my refusal to have onsite testing completed. I was a little paranoid about money. Since my labs were somewhat recent, the resident just went with it. Even with the residents opinion of not being able to see wegs, Dr. K. still wants me back every three months. Of course, like all the other specialists, they are used to dealing with their patients docs long distance.

vdub
02-22-2012, 01:24 PM
I'd go with U of U.... My experience with Dr Koening and his staff has been nothing but good!

ArlaMo
02-23-2012, 02:06 AM
Thanks everyone - lots to think about. I think I'm going to give Dr. K's office a call and see what it would take to get transferred. I'd love to be able to go back to CC more often - I just have all these little people around who need me to drive them to soccer and swimming and baseball and band concerts and....:tongue1: My dad was able to drive over and watch them when I went to CC last year, but he is using a walker now and I'm just not sure he could manage it. My mom still works full time, so it is challenging to find someone who can deal with the schedules of six kids. Ugh.

Al
02-23-2012, 06:24 AM
Thanks everyone - lots to think about. I think I'm going to give Dr. K's office a call and see what it would take to get transferred. I'd love to be able to go back to CC more often - I just have all these little people around who need me to drive them to soccer and swimming and baseball and band concerts and....:tongue1: My dad was able to drive over and watch them when I went to CC last year, but he is using a walker now and I'm just not sure he could manage it. My mom still works full time, so it is challenging to find someone who can deal with the schedules of six kids. Ugh.
Hey, SLC is not a bad place for a family vacation....

Al