Re: Me and Emory

[Guest guest]

Barbara

Yes, its normally a full day ritual the first time. Glad you got to

Emory and I'm sure you'll find your next appointment very beneficial

>

> Though I haven't been posting much lately, I have been faithfully

> reading everyone else's posts, and feel I have learned a great deal.

> Thanks to those who are so tireless in their helpfulness to others on

> the forum. I sympathize and pray for those who are feeling poorly,

> and empathize with those who are frightened. I laugh with the

> comical postings of some, and I love to hear of those who improve

> and/or are learning how to live with this illness. I very much

> appreciate this forum!

>

> I went to Emory University Hospital on Thursday to see Dr. Staton.

> My pulmodude here in WNC had told me that all tests had been sent

> ahead, and that my consultation would probably be no more than a half-

> hour. (Or at least that's what I THINK he said.....) We left home

> in WNC at 9:00am and arrived at Emory at 12:30pm. Though my

> appointment was at 2:00, I hoped they would do all the " new patient "

> stuff upon my arrival, and then my husband Mike and I could get a

> bite to eat. Well, I was wrong and I didn't get checked in until

> 1:20 at which time the admissions person told me that they would put

> the papers in early and perhaps the doctor would see me before 2:00.

> So we just sat and didn't eat. At about 2:20, I was called in and

> spoke with Dr. Staton who wanted to look at the x-rays and the CT

> previously done. Unfortunately I didn't have them and they hadn't

> been sent. So....... he ordered up a whole batch of tests (PFTs, 6-

> minute walk, arterial blood gas, eight other blood tests, new x-rays

> and a new CT). There was no time to do the CT that day, as it needs

> pre-approval by the insurance company but everything else was done,

> taking until 5:30. By the time we got out of there and found a place

> to eat, it was 6:30. I was very grateful for dinner that night.

>

> Since he did not have all the info he needed, Dr. Staton didn't

> really have anything to tell me. He did " drop a seed " so that I

> would consider being part of a trial, if they think I am an

> appropriate candidate. In fact, he told the research person about

> me, and she introduced herself and chatted up the idea. Of course,

> I'd need to have a bunch of info on any proposed trial, and I'd need

> to think/talk it over with Mike. The research person said

> that " things might not be as bad " as I think, and " there is hope " --a

> nice thing to hear.

>

> I have an appointment with Dr Staton scheduled for 2/20 to which I am

> to bring the x-rays and CT from my local pulmodude. I really don't

> know anything more now than I did before I went, but I am hopeful

> that in three weeks I will know much more about my own personal

> health, and what (if anything) I need to do now to manage it.

>

[Guest guest]

Barbara,

I am also a patient at Emory, My doctor is Dr. and he is the head of IPF. He is the one you would see if you want to be in the trials. I was in the StepTrial last year. His nurse, Tamra, is his wife and she is awesome! Ask Dr. Staton to refer you to Dr. for consideration in any trials. They are still enrolling in the Step Trial, which is only a six month trial. It is a good way for them to get to know you well since you would visit every 6 weeks. There are a couple of times when the visits are back to back weeks. After seeing Dr. , I know you would want to change to him.

Whenever you go there, please take your own records, etc. I have carried my biopsy slides there 3 times, since I had that procedure in Chattanooga at Memorial. Emory is NOT a good place to have a local doctor send your records to them because they will NEVER receive them. Dr. does something that Dr. Staton does not do: Dr. will personally fax records to your doctors from his own fax. It does not work for Emory to do this because Emory is so large.

I used to go to Dr. Staton but I do not like his bedside manner (yes, I have seen him in the hospital before) and I do not like how he talked to me. My husband, Eddie, would never let me go to see him by myself because he always made me upset.

I know of an individual in the Support Group at Emory who was referred to Dr. for participation in a trial. He is still a patient of Dr. Staton. Dr. Staton does not do Trials.

If you have any more questions, I would be happy to listen. I am telling you all this information because I learned the hard way. I also got Joe (Joe & Joanie) into see Dr. . They had come to a Support Group Meeting at Emory and out in the hall I told Tamra, the nurse, that my friend, Joe, needed an appointment. Now he is also a patient of Dr. .

Eddie & I and Joe & Joanie are all in the Hip Trial. Whenever we have our appointment with Dr. , we see Veronikka, who gets our specimens (Blood, salivia, junk you cough up).

The next support group meeting I think is March 19th at 11:00 am and Dr. will speak.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Though I haven't been posting much lately, I have been faithfully > reading everyone else's posts, and feel I have learned a great deal. > Thanks to those who are so tireless in their helpfulness to others on > the forum. I sympathize and pray for those who are feeling poorly, > and empathize with those who are frightened. I laugh with the > comical postings of some, and I love to hear of those who improve > and/or are learning how to live with this illness. I very much > appreciate this forum!> > I went to Emory University Hospital on Thursday to see Dr. Staton. > My pulmodude here in WNC had told me that all tests had been sent > ahead, and that my consultation would probably be no more than a half-> hour. (Or at least that's what I THINK he said.....) We left home > in WNC at 9:00am and arrived at Emory at 12:30pm. Though my > appointment was at 2:00, I hoped they would do all the "new patient" > stuff upon my arrival, and then my husband Mike and I could get a > bite to eat. Well, I was wrong and I didn't get checked in until > 1:20 at which time the admissions person told me that they would put > the papers in early and perhaps the doctor would see me before 2:00. > So we just sat and didn't eat. At about 2:20, I was called in and > spoke with Dr. Staton who wanted to look at the x-rays and the CT > previously done. Unfortunately I didn't have them and they hadn't > been sent. So....... he ordered up a whole batch of tests (PFTs, 6-> minute walk, arterial blood gas, eight other blood tests, new x-rays > and a new CT). There was no time to do the CT that day, as it needs > pre-approval by the insurance company but everything else was done, > taking until 5:30. By the time we got out of there and found a place > to eat, it was 6:30. I was very grateful for dinner that night.> > Since he did not have all the info he needed, Dr. Staton didn't > really have anything to tell me. He did "drop a seed" so that I > would consider being part of a trial, if they think I am an > appropriate candidate. In fact, he told the research person about > me, and she introduced herself and chatted up the idea. Of course, > I'd need to have a bunch of info on any proposed trial, and I'd need > to think/talk it over with Mike. The research person said > that "things might not be as bad" as I think, and "there is hope"--a > nice thing to hear. > > I have an appointment with Dr Staton scheduled for 2/20 to which I am > to bring the x-rays and CT from my local pulmodude. I really don't > know anything more now than I did before I went, but I am hopeful > that in three weeks I will know much more about my own personal > health, and what (if anything) I need to do now to manage it.>