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View Full Version : Very positive experience with Dr. Koening at U of U Vasculitis Center.



ArlaMo
11-28-2012, 05:09 AM
Had my first appointment with Dr. Koening yesterday - he confirmed that I'm flaring :sad: but I was very pleased with my time with him. He was very respectful of the knowledge that I have gained through this forum and all the other research and reading I've done, was very in depth in answering all my questions and I'm happy with the treatment plan he has laid out for me. Two thumbs way up for Dr. Koening!

I was also seen at the Moran Eye Clinic, which is a great facility as well. I'll need to see someone closer to home for follow-up care, but they were great. They called and talked to Dr. Koening while I was there and consulted on treatment and both parties agreed that a new round of rtx infusions ASAP is the best course for me.

annekat
11-28-2012, 05:50 AM
This is great to hear! I am in the Puget Sound area. It is within the realm of possibility that I could make a trip to Salt Lake City someday.

pberggren1
11-28-2012, 07:50 AM
Ya for Dr. K!!!!

Palmyra
11-28-2012, 03:07 PM
We will all hope RTX is available to you soon, and brings you speedy relief. Be sure to contact others on site before your first infusion, so as to be prepared. Good luck!!!

ArlaMo
12-14-2012, 06:54 AM
Had my first round of rtx (I had two infusions in April 2011) last Friday. No problems, just very tired afterwards. Next one is tomorrow, then the 21st and 28th. Crazy holiday season, but I'm glad to get them all in before the end of the year.

Palmyra
12-14-2012, 11:42 AM
Hi AriaMo. I really hope this round of infusions gives you some speedy relief!

Question regarding Dr Koening....is he possibly John's Hopkins trained, dark hair/skin and 40'ish?

ArlaMo
12-14-2012, 11:54 AM
He has dark hair, but his skin isn't dark. He said he trained under Dr. Langford.

Palmyra
12-15-2012, 02:06 AM
OK, thanks. I am just getting old, and have seen or heard lectures by too many docs. My local VF foundation had a young doc speak some years ago under my description, and he was great. But he trained at John's Hopkins, moved to the Dallas area, then seemingly disappeared. I can't remember this gentleman's name. (The local VF group has fragmented, and is no longer active).

I know I have seen Koening's name in with the Big boys and girls, and on several publication headers, so you are definitely hanging out with the right crowd! I hope each day post RTX finds you feeling stronger AriaMo. It seems to work that way for my daughter.

Best wishes for a Happy Holiday season!
Jane

ArlaMo
01-10-2013, 03:18 PM
More kudos for Dr. K! Saw him again on Monday for a follow-up appointment. He spent a solid 1/2 hour with me, answered all my questions, went over my visit to the ophthalmologist in Portland, meds, everything. He even did some research on how my Graves' Disease meds might be interacting with all the Wegs stuff and called me twice yesterday to discuss what he had found.

Palmyra
01-10-2013, 10:43 PM
:thumbup: Better than good news Aria Mo!! A concerned involved Doc, that knows what he is talking about....its like a dream date w/ Mr Right!

annekat
01-11-2013, 03:51 AM
:thumbup: Better than good news Aria Mo!! A concerned involved Doc, that knows what he is talking about....its like a dream date w/ Mr Right! I thought the same thing when I read that he actually spent a half hour with her and answered all her questions! Dr. Right!

shannonkop
01-22-2013, 10:44 AM
Dr. K is awesome! I saw him back in 2007 when I went to Cleveland for my second opinion. He spent an hour and a half with me my first appt. and called me often to update me on their review of my records and to see if my doctor in Pittsburgh was keeping me on the meds he wanted and was taking me off of others. I miss him. He is the reason I switched my care to CC. You are lucky....Keep him as your doc for sure.

annekat
01-22-2013, 11:14 AM
Dr. K is awesome! I saw him back in 2007 when I went to Cleveland for my second opinion. He spent an hour and a half with me my first appt. and called me often to update me on their review of my records and to see if my doctor in Pittsburgh was keeping me on the meds he wanted and was taking me off of others. I miss him. He is the reason I switched my care to CC. You are lucky....Keep him as your doc for sure. That's a great recommendation! If I could actually get it together to travel to see a real specialist, Dr. K might be the closest for me.... the other would be in SF.... either way, at least 700 miles!

shannonkop
01-22-2013, 11:33 AM
hi Anne. My brother who always goes to my appointments in Cleveland and met him said that if this all goes sideways on me someday we are flying to Utah to see that southern guy with his free air miles. haha. He was impressed by him too. He left Cleveland to start the Vasculitis center in Salt Lake. He is very friendly nice and knowledgeable.

annekat
01-22-2013, 12:45 PM
hi Anne. My brother who always goes to my appointments in Cleveland and met him said that if this all goes sideways on me someday we are flying to Utah to see that southern guy with his free air miles. haha. He was impressed by him too. He left Cleveland to start the Vasculitis center in Salt Lake. He is very friendly nice and knowledgeable. That's great! I do know some old family friends in SLC whom perhaps I could stay with. I'd probably drive! Maybe find a friend with an RV. Sounds like an adventure. Right now I have no resources to do any of that.... but I'd better plan for it in case things go "sideways"!