Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hi Dee... I am on both sites because my son has both PSC and AIH....this is where you would write to for the PSC.... If you have any trouble let me know and we can try something else....' Hope to see you over there... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 Hi Dee... I am on both sites because my son has both PSC and AIH....this is where you would write to for the PSC.... If you have any trouble let me know and we can try something else....' Hope to see you over there... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Dee Hi its Luanne ....have you been able to get to the PSC group...if so let me know...we do have some one new who signs in Denny...is that you.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Dee...I see that you are in the process of being registered here...but your e-mails are coming thru ok so seems like you can go ahead and get intouch with the group... Some of the terms here are DX...diagnosed TX...transplant I think the doc who has treated so many patients in s doctor...It is his wife, , who is active here.... I will write her and ask...I think they live west of Illionis....really can't remember...where do you live.... don't forget to ask as many guestions as needed to feel secure about this disease....It is nice to be informed ...especially when going to the doctors.... talk to you soon.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 In a message dated 8/16/01 11:48:36 AM Pacific Daylight Time, dvinovich@... writes: does LOL mean lost of love, lots of luck, or what? DEE from Peoria husb, 58 dx 1999 I like your interpretations of LOL best. Most people use it to mean Laughing Out Loud. (I didn't know, either, until I joined this group, as I'd used the internet only for work.) Best wishes to you, your husband, and your friends. Harper (AIH 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2001 Report Share Posted August 17, 2001 Hi Luanne, I am sorry took so long to answer, Yes I have been able to get to PSC and have found it very helpful to gather a list for the doctors, although we do not have a hepatologist or liver specialist. My husband 58 was DX Mayo 1999 and has not addressed the issue much nor returned as requested because of a terrible reaction to the liver biopsy that almost killed him. I am not Denny and will be signing as Dee, ok? I did get the information from you about terms and you can see I have used one, thanks. I also printed the info that gave the info about Walter Payton's disease, He is the reason my husband would not continue with his treatment at Mayo's. The day Walter Payton died was the day before my husband DX came to him. I have not been able to keep up with the emails because my best friends husband has been termed terminal with cancer and I am one of the few support people she has so I will try and keep up but will be hard. Thanks for the help, does LOL mean lost of love, lots of luck, or what? DEE from Peoria husb, 58 dx 1999 Re: [ ] Dee...PSC Dee Hi its Luanne ....have you been able to get to the PSC group...if so let me know...we do have some one new who signs in Denny...is that you.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2001 Report Share Posted August 20, 2001 Hi Dee... Glad to see some posts from you...I saw one over on the Liversupport also...guess you are still there..... I think everyone here has some link to the Walter Payton story....We are huge football fans so when he came on the news with the announcement of PSC and how skinny he looked it was rather scary....Then Tyler who was already being treated for quite a few auto-immune diseases....since he was 9..Crohns...RA...Vasculitis...the list goes on and on...well then about a week later he had his biopsy and then a week after that he had the ERCP....confirmed...AIH and PSC....double whammy....jumped on here to learn all that I could...infact when the tests were order I had already been checking out what I could.... What problems did you husband have...is his name ,,,not sure if I am remember right... Sorry about your friends going thru a very tough time right now...I am sure you are well appreciated.....good friends are hard to find...the ones who stick with you thru the good and the bad....Luckily my highschool best friend is still a good friend and we have gone thru alot together...even though we don't live close anymore..... Tell you husband that no matter what he needs to be taking care of himself and one of those things to do is to see a doctor and take the meds....if will at least slow the process down...maybe for years.... Ty takes over 11 different meds everyday....one of the meds he has to take 5 pills in the am and 5 again in the pm...totaling about 20 or so pills a day....and has to go to the hosp once a month for a treatment.....that now takes all day...leaving him pretty wiped for the rest of the day ....this is for his Crohns and RA......Believe me Ty HATES taking all these and hates all the other stuff he has to go thru...but he HATES it more when he lands in the hosp and misses out on life..... So tell him please to take care of himself.... I hope to hear from you soon and that he is seeing someone to get him on the road to being taken care of....don't wait until you feel so bad that he is in the hosp.....OK...I will stop nagging....LOL....(laugh our loud..and if in caps....LOL...I am laughing really loud...) Talk to you soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
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