Re: Stents, anyone?

March 7, 2002

Hi I am seeing a doctor at UCSD medical center in San Diego. His name is H. Harrell. He is on the internet. Here is his site

http://medicine.ucsd.edu/pulmonary/Harrell.htm. He is a very good doctor. I would definately reccommend him to anyone who is having trachel involvement, and who made need some stenting work done. Please do look at his site and give him a call. If you have other questions feel free to email me personally too.

Ronnielyn27@...

Stents, anyone?

Thank you, everyone, for your assistance with my decision about thelaryngoscopic procedure....it sure helps to have the experience of fellowRPers ease my mind.Here's another question that I have re: stents. VERONICA HARVEY, I hope that you're still on the group's listing, as Ilost your e-mail address,I just got back from a follow up visit with my pulmonologist for my acutebronchitis. He strongly suggests that I consider flying up to themainland to a clinic that's familiar in treating RP for a consult re: acomprehensive assessment for possible stents in the future. I've hadtracheal involvement for the past 3 years,and, it seems to beworsening....need to be prepared. In Hawaii, there are NO surgeons who are familiar with bronchial -tracheal stenting.Carolyn went to the Mayo Clinic, but, I kinda hate to fly so far toRochester, Minnesota. I recall Harvey saying that she had tocheck on her stents every quarter. But, I had forgotten where in SanDiego she went to. If anyone would like to personally recommend their RP clinic/surgeon/doc,I would appreciate finding out from you their names/phone numbers. I'd like to give this info to my rheumy and perhaps set up a consult. Idid consult with Dr. Trentham back in 1993, and will also try to find outwho he recommends.If I have to fly to the Mayo Minnesota clinic, I guess I could, but, itwould be so much easier ( & economical) to fly to the west coast insteadof the east coast, especially for follow ups. Thank you so much! Aloha, karenDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

March 7, 2002

In a message dated 3/7/02 8:16:13 PM Pacific Standard Time,

katdavis@... writes:

<< His name is P. Utz, M.D. >>

, this is your doctor at Mayo?? That is exactly the same name of my

rheumy at Stanford. Wonder if they are related. Is your's old. LOL Mines

young, might be his son. Wouldn't that be strange. Mine is wonderful too.

In fact he's the one that is going to be helping out in the Foundation. If

they are related, maybe we can get them both.

I had to go look at his card again to make sure and yep P. Utz.

hugs

March 7, 2002

,

I'm glad that you have made contact with Harvey as she has had a good

experience with her stent and her doctor that put it in. But if you are

considering the Mayo Clinic in Rochester, MN, I can recommend my pulmonologist.

His name is P. Utz, M.D. and I think he's great. When he confirmed my

diagnosis of RP and Wegener's Granulomatosis he also had me see a Mayo

rheumatologist, Clement Michet, M.D. who specializes in RP. Michet is equally

great. I have a lot of pulmonary involvement, but it is their opinion that I

wait until my condition worsens to put in a stent. However, last summer they

(Mayo) measured me for a stent and they have had a special one manufactured for

me that is sitting on a shelf for whenever. Because both my trach and bronchial

mainstems are involved, a Y-stent about 10 cm in length has been created. Dr.

Utz said that he has had to remove several trach stents from patients because

they seem to migrate. This is why he is reluctant to p!

ut a stent in me until we get to where it's a matter of my quality of life. And

after 11 months on Cytoxan and Bactrim, my breathing is improving and and there

is more stability and patency in my airways. If you need/want any phone

numbers, just let me know.

(Kansas City)

Stents, anyone?

Re: Thank you, everyone, for your assistance with my decision about the

Re: laryngoscopic procedure....it sure helps to have the experience of fellow

Re: RPers ease my mind.

Re:

Re: Here's another question that I have re: stents.

Re:

Re: VERONICA HARVEY, I hope that you're still on the group's listing, as I

Re: lost your e-mail address,

Re:

Re: I just got back from a follow up visit with my pulmonologist for my acute

Re: bronchitis. He strongly suggests that I consider flying up to the

Re: mainland to a clinic that's familiar in treating RP for a consult re: a

Re: comprehensive assessment for possible stents in the future. I've had

Re: tracheal involvement for the past 3 years,and, it seems to be

Re: worsening....need to be prepared.

Re:

Re: In Hawaii, there are NO surgeons who are familiar with bronchial -

Re: tracheal stenting.

Re:

Re: Carolyn went to the Mayo Clinic, but, I kinda hate to fly so far to

Re: Rochester, Minnesota. I recall Harvey saying that she had to

Re: check on her stents every quarter. But, I had forgotten where in San

Re: Diego she went to.

Re:

Re: If anyone would like to personally recommend their RP clinic/surgeon/doc,

Re: I would appreciate finding out from you their names/phone numbers.

Re:

Re: I'd like to give this info to my rheumy and perhaps set up a consult. I

Re: did consult with Dr. Trentham back in 1993, and will also try to find out

Re: who he recommends.

Re:

Re: If I have to fly to the Mayo Minnesota clinic, I guess I could, but, it

Re: would be so much easier ( & economical) to fly to the west coast instead

Re: of the east coast, especially for follow ups.

Re:

Re: Thank you so much! Aloha, karen

Re:

Re: DISCLAIMER!!

Re: WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED

HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE

NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT

FOR MANY OF US. THANK YOU

Re:

March 8, 2002

,

>>>>Re: , this is your doctor at Mayo??<<<<

I remember your email on return from Stanford and the name UTZ jumped off the