Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 I have another question-hope I'm not driving you all nuts with this! When you went to Mayo-for those that have Sue, Don etc... do you have any say in how long you have to be there? Can I tell them I only have 3 days or 5 days to work with? Also, they said to bring any x'rays etc within the last year and honestly I have nothing to take! I mean really with this liver disease the last thing I had done was my biopsy over a year ago! I plan on taking my slides and my labs-but what else can I give them? Do they need years of medical records or just the last year? Last question: Don, I know had the endoscopy, colonoscopy I believe-is that standard or is based on your answers and problems? I had an endoscopy done about 16 months ago-would that necessarily have to be repeated? Sorry-I'm just trying to mentally prepare myself!! I'm a wimp!!! Thanks again everybody. Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 Lori, What did they do to you during those 7 years? J >From: " Lori Cummins " <tlknj@...> >Reply- onelist >< onelist> >Subject: Re: [ ]Mayo again! >Date: Tue, 20 Jul 1999 21:06:57 -0500 >MIME-Version: 1.0 >From errors-165537-3885-shireen42 Tue Jul 20 19:46:42 1999 >Received: from [209.207.164.227] by hotmail.com (2.1) with ESMTP id >MHotMailB95E7F8D0174D82197E3D1CFA4E377310; Tue Jul 20 19:46:42 1999 >Received: (qmail 11606 invoked by alias); 21 Jul 1999 02:39:06 -0000 >Received: (qmail 6721 invoked from network); 21 Jul 1999 02:37:05 -0000 >Received: from unknown (HELO ns1.rconnect.com) (209.163.30.1) by >pop.onelist.com with SMTP; 21 Jul 1999 02:37:05 -0000 >Received: from tknlj (pmfair1-178.rconnect.com [209.163.11.178]) by >ns1.rconnect.com (8.9.3/8.9.1) with SMTP id VAA11884 for >< onelist>; Tue, 20 Jul 1999 21:37:11 -0500 (CDT) >Message-ID: <000201bed321$c38f9120$b20ba3d1@tknlj> >X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 4.72.3110.1 >X-MimeOLE: Produced By Microsoft MimeOLE V4.72.3110.3 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: " Lori Cummins " <tlknj@...> > >Susie, I know from personal experience, I have spent alot of time at Mayo >and they do try to get you to stay on for an extended time, ONLY IF YOU LET >THEM!! I always tell them I have X amount of days to get my tests done and >they will try and schedule you for another day. But you have to be firm >with >them, and do not be afraid to speak up. I know they are concerned about our >health and all, but it is more money for them, the motels, the restaraunts, >ect. I know also that some times these tests they do can be quite lengthy, >so the time you will need to stay will depend on the kinds of tests they >will want to run. >I would take everything with you that you can or before you go have your >clinic that has all your medical records to fax them to Mayo, I'd say >anything that you have had done pertaining to the liver problem. My local >doctors were fooling around with me for 7 years before I was sent to Mayo >and got a diagnosis. I have since got copies of these medical records from >my own clinic and boy, what they don't write about you that you do not >know. >I was very disgusted. back in 1990 or so I think it was, the one internist >that I saw had made record in the notes that if my liver enzymes continued >to elevate, then maybe he would referr me to a GI doctor. Nothing was ever >said to me. >Oh well, it is done and over now, it is water under the bridge. I can just >be thankful that I finally did get to Mayo and get a diagnosis before it >was >too late. Sorry for the long post, I guess I say that it is O.K. when I >think if they would have only sent me to another Dr. sooner, maybe I could >be on meds and be in remission too. But it really makes me mad sometimes. >My >hepatologist told me that though AIH is so hard to diagnose that sometimes >it is too late, and transplant is the only alternative for some. GOOD LUCK >TO YOU !!!!!!!!!! >Lori C. AIH Liver TX 3~11~97 > Re: [ ]Mayo again! > > > >From: SUSIE22658@... > > > >I have another question-hope I'm not driving you all nuts with this! >When > >you went to Mayo-for those that have Sue, Don etc... do you have any say >in > >how long you have to be there? Can I tell them I only have 3 days or 5 >days > >to work with? Also, they said to bring any x'rays etc within the last >year > >and honestly I have nothing to take! I mean really with this liver >disease > >the last thing I had done was my biopsy over a year ago! I plan on >taking >my > >slides and my labs-but what else can I give them? Do they need years of > >medical records or just the last year? > > > >Last question: Don, I know had the endoscopy, colonoscopy I believe-is >that > >standard or is based on your answers and problems? I had an endoscopy >done > >about 16 months ago-would that necessarily have to be repeated? >Sorry-I'm > >just trying to mentally prepare myself!! I'm a wimp!!! > >Thanks again everybody. > >Susie > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Susie: I took the paper work from the time I got sick on October 1997, X-rays. They were returned to me after the were down with them. Just take everything that your doctors will give you. As for the time, tell them you want to be out of there on a certain day. Last time they had me coming back the next week and I cancelled it because if they can't do when I am there they have to wait. I called Mayo today and found out I will be going back the last week in September. I wanted to make sure that I didn't get scheduled when I go to Montana in the middle of September. If you feel like there is nothing really to take, don't take anything and have them do the tests. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Lori Thanks. I was hoping to do it in 3 days-I know that is quick. I am willing to stay the weekend if necessary because it is a 500 plus mile drive. I just don't want to be there any longer. My appointment is on Wed. which makes all of this difficult since they do nothing on the weekend-at least that is my understanding. I really don't have that many medical records to send! I think I may have 30 pages from this year and the rest would be related to my depression etc... Thanks Susie But you would fax it to them-how about biopsy slides-send early? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Susie, I know from personal experience, I have spent alot of time at Mayo and they do try to get you to stay on for an extended time, ONLY IF YOU LET THEM!! I always tell them I have X amount of days to get my tests done and they will try and schedule you for another day. But you have to be firm with them, and do not be afraid to speak up. I know they are concerned about our health and all, but it is more money for them, the motels, the restaraunts, ect. I know also that some times these tests they do can be quite lengthy, so the time you will need to stay will depend on the kinds of tests they will want to run. I would take everything with you that you can or before you go have your clinic that has all your medical records to fax them to Mayo, I'd say anything that you have had done pertaining to the liver problem. My local doctors were fooling around with me for 7 years before I was sent to Mayo and got a diagnosis. I have since got copies of these medical records from my own clinic and boy, what they don't write about you that you do not know. I was very disgusted. back in 1990 or so I think it was, the one internist that I saw had made record in the notes that if my liver enzymes continued to elevate, then maybe he would referr me to a GI doctor. Nothing was ever said to me. Oh well, it is done and over now, it is water under the bridge. I can just be thankful that I finally did get to Mayo and get a diagnosis before it was too late. Sorry for the long post, I guess I say that it is O.K. when I think if they would have only sent me to another Dr. sooner, maybe I could be on meds and be in remission too. But it really makes me mad sometimes. My hepatologist told me that though AIH is so hard to diagnose that sometimes it is too late, and transplant is the only alternative for some. GOOD LUCK TO YOU !!!!!!!!!! Lori C. AIH Liver TX 3~11~97 Re: [ ]Mayo again! >From: SUSIE22658@... > >I have another question-hope I'm not driving you all nuts with this! When >you went to Mayo-for those that have Sue, Don etc... do you have any say in >how long you have to be there? Can I tell them I only have 3 days or 5 days >to work with? Also, they said to bring any x'rays etc within the last year >and honestly I have nothing to take! I mean really with this liver disease >the last thing I had done was my biopsy over a year ago! I plan on taking my >slides and my labs-but what else can I give them? Do they need years of >medical records or just the last year? > >Last question: Don, I know had the endoscopy, colonoscopy I believe-is that >standard or is based on your answers and problems? I had an endoscopy done >about 16 months ago-would that necessarily have to be repeated? Sorry-I'm >just trying to mentally prepare myself!! I'm a wimp!!! >Thanks again everybody. >Susie > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Where exactly is Mayo! I know that it is good, but is that the recommended place to go? Lynn Roselle50@... wrote: > From: Roselle50@... > > Susie: > > I took the paper work from the time I got sick on October 1997, X-rays. They > were returned to me after the were down with them. Just take everything that > your doctors will give you. As for the time, tell them you want to be out of > there on a certain day. Last time they had me coming back the next week and > I cancelled it because if they can't do when I am there they have to wait. > > I called Mayo today and found out I will be going back the last week in > September. I wanted to make sure that I didn't get scheduled when I go to > Montana in the middle of September. > > If you feel like there is nothing really to take, don't take anything and > have them do the tests. > > Sue AIH > Wisconsin > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Lori, Just Thank God that you did find Mayo-Wow what a story! Too bad you had to go thru such an ordeal. Take care. Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Do you know if they take NJ medicaid or if they have a way for someone to go there without insurance? J >From: " Lori Cummins " <tlknj@...> >Reply- onelist >< onelist> >Subject: Re: [ ]Mayo again! >Date: Wed, 21 Jul 1999 08:02:42 -0500 >MIME-Version: 1.0 >From errors-165537-3928-shireen42 Wed Jul 21 06:04:04 1999 >Received: from [209.207.164.207] by hotmail.com (2.1) with ESMTP id >MHotMailB95F104401BBD820F3ADD1CFA4CF08270; Wed Jul 21 06:04:04 1999 >Received: (qmail 24314 invoked by alias); 21 Jul 1999 13:03:46 -0000 >Received: (qmail 24268 invoked from network); 21 Jul 1999 13:03:45 -0000 >Received: from unknown (HELO ns1.rconnect.com) (209.163.30.1) by >pop.onelist.com with SMTP; 21 Jul 1999 13:03:45 -0000 >Received: from tknlj (pmfair1-169.rconnect.com [209.163.11.169]) by >ns1.rconnect.com (8.9.3/8.9.1) with SMTP id IAA16958 for >< onelist>; Wed, 21 Jul 1999 08:04:00 -0500 (CDT) >Message-ID: <004701bed379$5312d800$ad0ba3d1@tknlj> >X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 4.72.3110.1 >X-MimeOLE: Produced By Microsoft MimeOLE V4.72.3110.3 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: " Lori Cummins " <tlknj@...> > >Mayo is located in South eastern Minnesota, not too far from Wisconsin. It >is a world known clinic for many many diseases and disorders. they have a >bucnch of wonderful Gi doctors and hepatologists as well. Their Liver >transplant program is rated among the highest if not the highest in the >country. Their success rate for liver tx 3 years ago was over 90 percent, >and that is even a greater percent now. Just as any clinic, some people do >not have any luck there, but I can sing their praises daily. > Re: [ ]Mayo again! > > > >From: Lynn <CEN32195@...> > > > >Where exactly is Mayo! I know that it is good, but is that the >recommended >place > >to go? Lynn > > > >Roselle50@... wrote: > > > >> From: Roselle50@... > >> > >> Susie: > >> > >> I took the paper work from the time I got sick on October 1997, X-rays. >They > >> were returned to me after the were down with them. Just take everything >that > >> your doctors will give you. As for the time, tell them you want to be >out of > >> there on a certain day. Last time they had me coming back the next >week >and > >> I cancelled it because if they can't do when I am there they have to >wait. > >> > >> I called Mayo today and found out I will be going back the last week in > >> September. I wanted to make sure that I didn't get scheduled when I go >to > >> Montana in the middle of September. > >> > >> If you feel like there is nothing really to take, don't take anything >and > >> have them do the tests. > >> > >> Sue AIH > >> Wisconsin > >> > >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Well maybe it would be best if you have your clinic make copies for you and tell them it is to take with you because if it is for personal use they may charge you. Otherwise I guess if they get faxed early they may get lost in the shuffle. the slides of biopsy I would definately take with you. Lot of luck! Lori C. AIH~ transplant Re: [ ]Mayo again! >From: SUSIE22658@... > >Lori >Thanks. I was hoping to do it in 3 days-I know that is quick. I am willing >to stay the weekend if necessary because it is a 500 plus mile drive. I just >don't want to be there any longer. My appointment is on Wed. which makes all >of this difficult since they do nothing on the weekend-at least that is my >understanding. I really don't have that many medical records to send! I >think I may have 30 pages from this year and the rest would be related to my >depression etc... >Thanks >Susie >But you would fax it to them-how about biopsy slides-send early? > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Mayo is located in South eastern Minnesota, not too far from Wisconsin. It is a world known clinic for many many diseases and disorders. they have a bucnch of wonderful Gi doctors and hepatologists as well. Their Liver transplant program is rated among the highest if not the highest in the country. Their success rate for liver tx 3 years ago was over 90 percent, and that is even a greater percent now. Just as any clinic, some people do not have any luck there, but I can sing their praises daily. Re: [ ]Mayo again! >From: Lynn <CEN32195@...> > >Where exactly is Mayo! I know that it is good, but is that the recommended place >to go? Lynn > >Roselle50@... wrote: > >> From: Roselle50@... >> >> Susie: >> >> I took the paper work from the time I got sick on October 1997, X-rays. They >> were returned to me after the were down with them. Just take everything that >> your doctors will give you. As for the time, tell them you want to be out of >> there on a certain day. Last time they had me coming back the next week and >> I cancelled it because if they can't do when I am there they have to wait. >> >> I called Mayo today and found out I will be going back the last week in >> September. I wanted to make sure that I didn't get scheduled when I go to >> Montana in the middle of September. >> >> If you feel like there is nothing really to take, don't take anything and >> have them do the tests. >> >> Sue AIH >> Wisconsin >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 , to make a long story sort of short, I was a blood donor when I turned 17 in 1983 and continued to be until 1989 in June, I donated blood and was sent a letter by the Red Cross stating they could not take my blood, my liver enzymes were elevated. So I called Red Cross Dr. Said elevation could be from alcohol drinking, being overweight ect. So I followed up with my family physician. Said it was nothing to worry about. Then later in 1989 started to get bad stomach problems. Burning, belching had tests, said nothing was wrong, gave me carafate for stomach. Continued to see doc, actually saw 4 docs at my hometown clinic, all made the decision I was a young mother and my husband worked away from home all week, so they figured I must be depressed. Put me on Prozac. Didn't help to say the least. By 1993 I still had ELF tests and I even saw foot dr. that year who did blood work, and now that I see all those medical records now I am totally shocked. My ANA was 1: 1,280 in 1993, the paper said " PATIENT POSITIVE " and that copy of that bloodwork was sent to my regular doc. Nothing was said. Of course back then I was really naive about health care & doctors. If I only knew then what I know now, I would have went to find another clinic. After they had put me on Prozac I finally had given up and figuring out why my liver enzymes were elevated. So I did not go back for 3 years. By 1996 I was falling asleep everywhere, even behind the wheel of the car with my 3 kids and brother with me. I finally went back to the doc on June 26, 1996 and he took blood and he said he thought I had a thyroid problem. I got a message when I got home from town that day later, and my doc wanted to send me to Rochester. By then all my blood levels were so low, they thought I had leukemia & sent me to Rochester for bone marrow biopsy. It was fine. It took 3 1/2 weeks and more tests at Mayo for the oncologist(cancer dr.) I was seeing to declare, " YOUNG MRS. CUMMINS YOU HAVE CIRRHOSIS " So I was sent to GI at Mayo to confirm the diagnosis. It was confirmed by Dr. Czaja & Dr. Marotta- AIH with cirrhosis, had vairices banded and then saw liver tx clinic- given 1 year to live in Oct. 1996 & transplanted 3~11~97. Many have said I should write a book to tell my story. I just may. It shows how hard it is to get a diagnosis for AIH, It was almost too late for me, thank God for Mayo. Sorry it was so long, once I get going I can ramble on. Now you know my story!! Lori C. Re: [ ]Mayo again! >> >> >> >From: SUSIE22658@... >> > >> >I have another question-hope I'm not driving you all nuts with this! >>When >> >you went to Mayo-for those that have Sue, Don etc... do you have any say >>in >> >how long you have to be there? Can I tell them I only have 3 days or 5 >>days >> >to work with? Also, they said to bring any x'rays etc within the last >>year >> >and honestly I have nothing to take! I mean really with this liver >>disease >> >the last thing I had done was my biopsy over a year ago! I plan on >>taking >>my >> >slides and my labs-but what else can I give them? Do they need years of >> >medical records or just the last year? >> > >> >Last question: Don, I know had the endoscopy, colonoscopy I believe-is >>that >> >standard or is based on your answers and problems? I had an endoscopy >>done >> >about 16 months ago-would that necessarily have to be repeated? >>Sorry-I'm >> >just trying to mentally prepare myself!! I'm a wimp!!! >> >Thanks again everybody. >> >Susie >> > >> >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Lori, Thank yu for telling me your story. Too often we get that kind of run-a-round! My alkaline phosphatase has been high for years and I kept gettin " it's nothing to worry about " . Well, you are ok now and that is good. J >From: " Lori Cummins " <tlknj@...> >Reply- onelist >< onelist> >Subject: Re: [ ]Mayo again! >Date: Wed, 21 Jul 1999 08:27:00 -0500 >MIME-Version: 1.0 >From errors-165537-3929-shireen42 Wed Jul 21 06:26:53 1999 >Received: from [209.207.164.207] by hotmail.com (2.1) with ESMTP id >MHotMailB95F159C002AD82197A1D1CFA4CF71F50; Wed Jul 21 06:26:53 1999 >Received: (qmail 21150 invoked by alias); 21 Jul 1999 13:28:04 -0000 >Received: (qmail 21123 invoked from network); 21 Jul 1999 13:28:03 -0000 >Received: from unknown (HELO ns1.rconnect.com) (209.163.30.1) by >pop.onelist.com with SMTP; 21 Jul 1999 13:28:03 -0000 >Received: from tknlj (pmfair1-165.rconnect.com [209.163.11.165]) by >ns1.rconnect.com (8.9.3/8.9.1) with SMTP id IAA25812 for >< onelist>; Wed, 21 Jul 1999 08:28:18 -0500 (CDT) >Message-ID: <005801bed37c$b85f2080$ad0ba3d1@tknlj> >X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 4.72.3110.1 >X-MimeOLE: Produced By Microsoft MimeOLE V4.72.3110.3 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: " Lori Cummins " <tlknj@...> > >, to make a long story sort of short, I was a blood donor when I >turned >17 in 1983 and continued to be until 1989 in June, I donated blood and was >sent a letter by the Red Cross stating they could not take my blood, my >liver enzymes were elevated. So I called Red Cross Dr. Said elevation could >be from alcohol drinking, being overweight ect. So I followed up with my >family physician. Said it was nothing to worry about. Then later in 1989 >started to get bad stomach problems. Burning, belching had tests, said >nothing was wrong, gave me carafate for stomach. Continued to see doc, >actually saw 4 docs at my hometown clinic, all made the decision I was a >young mother and my husband worked away from home all week, so they >figured >I must be depressed. Put me on Prozac. Didn't help to say the least. By >1993 >I still had ELF tests and I even saw foot dr. that year who did blood work, >and now that I see all those medical records now I am totally shocked. My >ANA was 1: 1,280 in 1993, the paper said " PATIENT POSITIVE " and that copy >of >that bloodwork was sent to my regular doc. Nothing was said. Of course back >then I was really naive about health care & doctors. If I only knew then >what I know now, I would have went to find another clinic. After they had >put me on Prozac I finally had given up and figuring out why my liver >enzymes were elevated. So I did not go back for 3 years. By 1996 I was >falling asleep everywhere, even behind the wheel of the car with my 3 kids >and brother with me. I finally went back to the doc on June 26, 1996 and he >took blood and he said he thought I had a thyroid problem. I got a message >when I got home from town that day later, and my doc wanted to send me to >Rochester. By then all my blood levels were so low, they thought I had >leukemia & sent me to Rochester for bone marrow biopsy. It was fine. It >took >3 1/2 weeks and more tests at Mayo for the oncologist(cancer dr.) I was >seeing to declare, " YOUNG MRS. CUMMINS YOU HAVE CIRRHOSIS " So I was sent >to GI at Mayo to confirm the diagnosis. It was confirmed by Dr. Czaja & Dr. >Marotta- AIH with cirrhosis, had vairices banded and then saw liver tx >clinic- given 1 year to live in Oct. 1996 & transplanted 3~11~97. >Many have said I should write a book to tell my story. I just may. It shows >how hard it is to get a diagnosis for AIH, It was almost too late for me, >thank God for Mayo. Sorry it was so long, once I get going I can ramble >on. Now you know my story!! Lori C. > Re: [ ]Mayo again! > >> > >> > >> >From: SUSIE22658@... > >> > > >> >I have another question-hope I'm not driving you all nuts with this! > >>When > >> >you went to Mayo-for those that have Sue, Don etc... do you have any >say > >>in > >> >how long you have to be there? Can I tell them I only have 3 days or >5 > >>days > >> >to work with? Also, they said to bring any x'rays etc within the last > >>year > >> >and honestly I have nothing to take! I mean really with this liver > >>disease > >> >the last thing I had done was my biopsy over a year ago! I plan on > >>taking > >>my > >> >slides and my labs-but what else can I give them? Do they need years >of > >> >medical records or just the last year? > >> > > >> >Last question: Don, I know had the endoscopy, colonoscopy I >believe-is > >>that > >> >standard or is based on your answers and problems? I had an endoscopy > >>done > >> >about 16 months ago-would that necessarily have to be repeated? > >>Sorry-I'm > >> >just trying to mentally prepare myself!! I'm a wimp!!! > >> >Thanks again everybody. > >> >Susie > >> > > >> >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Don and all, When you go to mayo are you an inpatient or outpatient having to pay for hotel and meals etc. J >From: " Don Hanson " <donhanson@...> >Reply- onelist >< onelist> >Subject: Re: [ ]Mayo again! >Date: Wed, 21 Jul 1999 14:57:36 -0500 >MIME-Version: 1.0 >From errors-165537-3942-shireen42 Wed Jul 21 13:00:08 1999 >Received: from [209.207.164.211] by hotmail.com (2.1) with ESMTP id >MHotMailB95F71C70185D820F39FD1CFA4D320510; Wed Jul 21 13:00:08 1999 >Received: (qmail 14905 invoked by alias); 21 Jul 1999 20:00:32 -0000 >Received: (qmail 14897 invoked from network); 21 Jul 1999 20:00:32 -0000 >Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by >pop.onelist.com with SMTP; 21 Jul 1999 20:00:32 -0000 >Received: from donhanson (h-180-23.mn.mediaone.net [209.32.180.23]) by >chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id QAA06297 for >< onelist>; Wed, 21 Jul 1999 16:00:02 -0400 (EDT) >Message-ID: <006501bed3b3$4808de20$0264a8c0@...> >References: <fc9d6131.24c666d7@...> >X-Priority: 3 >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook Express 5.00.2314.1300 >X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2314.1300 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: " Don Hanson " <donhanson@...> > >Hi Susie, > >Sorry I didn't get this right away. We just found out that Terri, my wife, >has breast cancer. She had a biopsy last Friday. That tumor looked fairly >non aggressive and they hope to do a lumpectomy. But, she has a small >second >lump that they want to biopsy first. If that is positive then they will >have >to do a mastectomy, because they are pretty far away from each other. > >But...on to Mayo! They will try to keep your schedule as compact as >possible, but it really depends on how many tests you have done, and that >will depend on Dr Czaja's assessment at your first meeting. Consultations >are the appointments that seem to be scheduled out the farthest, they also >seem to be scheduled after your various tests. If you go to the desk on >that >floor and tell them that you'd like to see if you can move up your >appointment, they will check for any cancellations for that day. You can >only do it same day and they may have you come and wait, but I was able to >move a monday appointment to friday. They will accommodate you if possible. >Most of the desk personnel are very helpful. > >Take as many records as you can get your hands on. I make it a policy to >request copies of all my labs, etc. The labs and tests he orders will >depend >on your individual symptoms and how helpful the labs that you bring are. >Even if you bring some labs, he may want to compare with something more >current and so will still order the test. Hope this helps! > >Don >AIH Minneapolis > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Hi Susie, Sorry I didn't get this right away. We just found out that Terri, my wife, has breast cancer. She had a biopsy last Friday. That tumor looked fairly non aggressive and they hope to do a lumpectomy. But, she has a small second lump that they want to biopsy first. If that is positive then they will have to do a mastectomy, because they are pretty far away from each other. But...on to Mayo! They will try to keep your schedule as compact as possible, but it really depends on how many tests you have done, and that will depend on Dr Czaja's assessment at your first meeting. Consultations are the appointments that seem to be scheduled out the farthest, they also seem to be scheduled after your various tests. If you go to the desk on that floor and tell them that you'd like to see if you can move up your appointment, they will check for any cancellations for that day. You can only do it same day and they may have you come and wait, but I was able to move a monday appointment to friday. They will accommodate you if possible. Most of the desk personnel are very helpful. Take as many records as you can get your hands on. I make it a policy to request copies of all my labs, etc. The labs and tests he orders will depend on your individual symptoms and how helpful the labs that you bring are. Even if you bring some labs, he may want to compare with something more current and so will still order the test. Hope this helps! Don AIH Minneapolis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Hi Lynn, Mayo has several clinics. We are talking about their primary clinic which is in Rochester Minnesota, a few hours south of Minneapolis. Don AIH Minneapolis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Joan, I had that about suing the doctors and went as far as contacting 2 different malpractice lawyers, but they would not take my case, because they said in Minnesota the statute of limitations had run out. The last dr. I had really dealt with was in 1993 and I was not diagnosed until 1996. They said the limitation was 2 years. That really upset me. I really have tried to put it behind me. Thanks!! Lori C. Re: [ ]Mayo again! >From: BJMaes@... > >Lori, >Reading your story just makes it all that more important to get the word out >about AIH and PBC. I too had a doctor who looked at the LFT's and said it >was from a gall stone---then I moved and got a new doctor who said " no way " >and off I went, dragging my feet but finally had a biopsy six months later. >I sure wanted to believe what the first doctor said. It is very important to >get the word out about organ donation but we also need to make people aware >of our diseases---we all know that there are alot of people out there walking >around with liver disease and they have no idea. The sad part is that there >are doctors out there who don't know about it either---that is really scary. >I would almost think that you Lori could go back and sue your doctors for >malpractice----leading you to believe that your symptoms were something else >when in reality you had a very serious liver problem. Glad you got your >transplant and that you are sticking around to help others. Thanks, Joan > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 , I am not sure. I could give you the phone number and you could ask them. I know that they take Iowa medicaid, but I'm not sure about other states. Lori C. Re: [ ]Mayo again! >> >> >> >From: Lynn <CEN32195@...> >> > >> >Where exactly is Mayo! I know that it is good, but is that the >>recommended >>place >> >to go? Lynn >> > >> >Roselle50@... wrote: >> > >> >> From: Roselle50@... >> >> >> >> Susie: >> >> >> >> I took the paper work from the time I got sick on October 1997, X-rays. >>They >> >> were returned to me after the were down with them. Just take everything >>that >> >> your doctors will give you. As for the time, tell them you want to be >>out of >> >> there on a certain day. Last time they had me coming back the next >>week >>and >> >> I cancelled it because if they can't do when I am there they have to >>wait. >> >> >> >> I called Mayo today and found out I will be going back the last week in >> >> September. I wanted to make sure that I didn't get scheduled when I go >>to >> >> Montana in the middle of September. >> >> >> >> If you feel like there is nothing really to take, don't take anything >>and >> >> have them do the tests. >> >> >> >> Sue AIH >> >> Wisconsin >> >> >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Dah, I must have brain fog, and I have already had a transplant. It i sa problem with my short-term memory though. Meds may cause that they told me. Anyway the # for Mayo in Rochester is 1-507-284-2511. Lori C. AIH~ transplant Re: [ ]Mayo again! >>> >>> >>> >From: Lynn <CEN32195@...> >>> > >>> >Where exactly is Mayo! I know that it is good, but is that the >>>recommended >>>place >>> >to go? Lynn >>> > >>> >Roselle50@... wrote: >>> > >>> >> From: Roselle50@... >>> >> >>> >> Susie: >>> >> >>> >> I took the paper work from the time I got sick on October 1997, >X-rays. >>>They >>> >> were returned to me after the were down with them. Just take >everything >>>that >>> >> your doctors will give you. As for the time, tell them you want to be >>>out of >>> >> there on a certain day. Last time they had me coming back the next >>>week >>>and >>> >> I cancelled it because if they can't do when I am there they have to >>>wait. >>> >> >>> >> I called Mayo today and found out I will be going back the last week >in >>> >> September. I wanted to make sure that I didn't get scheduled when I >go >>>to >>> >> Montana in the middle of September. >>> >> >>> >> If you feel like there is nothing really to take, don't take anything >>>and >>> >> have them do the tests. >>> >> >>> >> Sue AIH >>> >> Wisconsin >>> >> >>> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Hi , When I went to Mayo (Scotsdale) I was outpatient and stayed in a hotel withing walking distance. Paid for hotel and meals etc. I have to say though, it was absolutely beautiful there in the desert. My husband and I took walks every night and saw spectacular lightening in the evening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 There are three Mayo Clinics. The one Dr. Czaja is at is in Rochester Minnesota. There is one in sdale Arizona and one in Florida. The main clinic is the one in Rochester. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Don: Sorry to hear about you wife. My prayers are with your family. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 Out paitent paying for meals & hotel!!! LoriC. Re: [ ]Mayo again! >>Date: Wed, 21 Jul 1999 14:57:36 -0500 >>MIME-Version: 1.0 >>From errors-165537-3942-shireen42 Wed Jul 21 13:00:08 1999 >>Received: from [209.207.164.211] by hotmail.com (2.1) with ESMTP id >>MHotMailB95F71C70185D820F39FD1CFA4D320510; Wed Jul 21 13:00:08 1999 >>Received: (qmail 14905 invoked by alias); 21 Jul 1999 20:00:32 -0000 >>Received: (qmail 14897 invoked from network); 21 Jul 1999 20:00:32 -0000 >>Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by >>pop.onelist.com with SMTP; 21 Jul 1999 20:00:32 -0000 >>Received: from donhanson (h-180-23.mn.mediaone.net [209.32.180.23]) by >>chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id QAA06297 for >>< onelist>; Wed, 21 Jul 1999 16:00:02 -0400 (EDT) >>Message-ID: <006501bed3b3$4808de20$0264a8c0@...> >>References: <fc9d6131.24c666d7@...> >>X-Priority: 3 >>X-MSMail-Priority: Normal >>X-Mailer: Microsoft Outlook Express 5.00.2314.1300 >>X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2314.1300 >>Mailing-List: list onelist; contact >> -owneronelist >>Delivered-mailing list onelist >>Precedence: bulk >>List-Unsubscribe: <mailto: -unsubscribeONElist> >> >>From: " Don Hanson " <donhanson@...> >> >>Hi Susie, >> >>Sorry I didn't get this right away. We just found out that Terri, my wife, >>has breast cancer. She had a biopsy last Friday. That tumor looked fairly >>non aggressive and they hope to do a lumpectomy. But, she has a small >>second >>lump that they want to biopsy first. If that is positive then they will >>have >>to do a mastectomy, because they are pretty far away from each other. >> >>But...on to Mayo! They will try to keep your schedule as compact as >>possible, but it really depends on how many tests you have done, and that >>will depend on Dr Czaja's assessment at your first meeting. Consultations >>are the appointments that seem to be scheduled out the farthest, they also >>seem to be scheduled after your various tests. If you go to the desk on >>that >>floor and tell them that you'd like to see if you can move up your >>appointment, they will check for any cancellations for that day. You can >>only do it same day and they may have you come and wait, but I was able to >>move a monday appointment to friday. They will accommodate you if possible. >>Most of the desk personnel are very helpful. >> >>Take as many records as you can get your hands on. I make it a policy to >>request copies of all my labs, etc. The labs and tests he orders will >>depend >>on your individual symptoms and how helpful the labs that you bring are. >>Even if you bring some labs, he may want to compare with something more >>current and so will still order the test. Hope this helps! >> >>Don >>AIH Minneapolis >> >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 1999 Report Share Posted July 23, 1999 , It's outpatient, so you get to eat decent food! <g> There is a cafeteria on the subway level that has decent breakfast and lunch fare at very reasonable prices. Even the hotel food is reasonably priced. Don Quote Link to comment Share on other sites More sharing options...
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