Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 Hello Iris, I am Lori C. and I was diagnosed with AIH in July 1996 and had a liver transplant on 3~11~97. Hope that you get as much from this group as I have. I have only been here about a month. Everyone is so friendly & helpful, and willing to listen to the good and the bad!! WELCOME!!!! [ ] HELLO >From: impsych@... > >I JUST WANTED TO SAY HELLO TO EVERYONE. > >MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I AM VERY HAPPY TO FINALLY FIND A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME EXPERIENCES. I HOPE TO BE SPEAKING WITH YOU AGAIN SOON. > >BYE FOR NOW, > >IRIS > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 Welcome, Iris. You have found a great collection of people. They are very supportive and eager to help in any way. Im rather new to this list as well. I have several autoimmune diseases which are now affecting my liver. I havent yet been diagnosed for the liver problems but I wager it is autoimmune cholangitis or AIH. Feel free to share with us your thoughts and feelings and struggles it will help you keep things from gettin bottled up inside. HUGS Jody --- Eileen Mcquillan <E.Mcquillan@...> wrote: > From: " Eileen Mcquillan " > <E.Mcquillan@...> > > Hello Iris > > Nice to hear from you!! I have a sister called > Iris! > > Eileen > [ ] HELLO > > > > From: impsych@... > > > > I JUST WANTED TO SAY HELLO TO EVERYONE. > > > > MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I > AM VERY HAPPY TO FINALLY > FIND A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME > EXPERIENCES. I HOPE TO > BE SPEAKING WITH YOU AGAIN SOON. > > > > BYE FOR NOW, > > > > IRIS > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 Hi Iris, What a wonderful name!!! Happy to have you on board! >From: KATBERCOO@... >Reply- onelist > onelist >Subject: Re: [ ] HELLO >Date: Wed, 4 Aug 1999 02:06:38 EDT > >From: KATBERCOO@... > >Hello Iris! > >Welcome to the group! > >Kathy (AIH) >Seattle area > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 Iris, Welcome, you will get almost every answer you need from this wonderful group of people. SueB. ---------- > From: impsych@... > onelist > Subject: [ ] HELLO > Date: Wednesday, 4 August 1999 16:01 > > From: impsych@... > > I JUST WANTED TO SAY HELLO TO EVERYONE. > > MY NAME IS IRIS, AND I JUST JOINED THIS GROUP. I AM VERY HAPPY TO FINALLY FIND A SUPPORT GROUP WITH PEOPLE WHO SHARE THE SAME EXPERIENCES. I HOPE TO BE SPEAKING WITH YOU AGAIN SOON. > > BYE FOR NOW, > > IRIS > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 Hello all, It is 90 degrees outside and here I sit bundled up in a blanket shivering!!! Well, the doctor I had lined up (infectious disease) decided that maybe I should see a rheumatoid doctor!! So the hunt for a doctor is on! I just feel so sick and no one understands me! I just keep getting more sicker and no treatment. I am sending a letter to the Lyme Foundation for a referral so hopefully help will be on the way. Deb-Va Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 --- DJinMECH@... wrote: > From: DJinMECH@... > > Hello all, It is 90 degrees outside and here I sit > bundled up in a blanket > shivering!!! > Well, the doctor I had lined up (infectious disease) > decided that maybe I > should see a rheumatoid doctor!! So the hunt for a > doctor is on! I just > feel so sick and no one understands me! I just keep > getting more sicker and > no treatment. I am sending a letter to the Lyme > Foundation for a referral so > hopefully help will be on the way. > Deb-Va > Deb- Sorry you are feeling so rotten. Do you have a fever?? I hope you find a doc soon and get started on some good treatment. We all know what you mean about no one understanding you. As unfair as it is we are all in the position that we have to prove our own dx and it is an uphill battle all the way. I hope you feel better soon and have a good experience with a new doc when you find one. L(MI) > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Deb I have to sleep with a horse blanket and a comforter! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 Thanks , I do feel better today, but I think it is the end of the cycle, will have a few good weeks (meaning I can function} then BAM its back again. Hopefully by then I will have a good doctor lined up. Anyone know of any in the Richmond area?? My hubby got bitten by a tick yesterday and i panicked!! Thats all we need is for him to get sick! I am keeping an eye on him very closely. I have enjoyed reading everyones notes, it is a good feeling to know that I am not alone in this, kinda like alien abductions! LOL Deb-VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 --- DJinMECH@... wrote: > From: DJinMECH@... > > Thanks , I do feel better today, but I think it > is the end of the cycle, > will have a few good weeks (meaning I can function} > then BAM its back > again. Hopefully by then I will have a good doctor > lined up. Anyone know of > any in the Richmond area?? > My hubby got bitten by a tick yesterday and i > panicked!! Thats all we need is > for him to get sick! I am keeping an eye on him > very closely. I have > enjoyed reading everyones notes, it is a good > feeling to know that I am not > alone in this, kinda like alien abductions! LOL > Deb-VA > Hi Deb- Glad you are feeling better. Sometimes I wish we were abducted by aliens haha at least people would listen to us. Hope your hubby is ok and if he does show signs your doc will get him on abx ASAP. You are so right about not having to feel alone anymore. Until I found this group I was feeling completely alone and didnt know what to do or who to tourn to. This is a great bunch and everybody really cares about each other. L(MI) > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 1999 Report Share Posted October 20, 1999 Deb: I have filed for SS but still in the works. I have long term disability insurance from my work. I was totally disabled on August 18th. I have a lot of pain in my legs and hips. But I take one day at a time. I have not quit any of my medicines but have had four relapses in the two years. I doctor with Dr Czaja at the Mayo Clinic so I know I am in very good hands. I also have only one insurance company now. It is still a pretty good policy. I only have to pay 10 percent after a $200 deductible. I also have about 10-15,000 a year of medical bills so 10% I can handle. I go to the Mayo two times a year for a checkup. I was down there the end of September and the bills were $5500.00 plus. So I feel pretty lucky. Don't give up the battle. I feel that being full of pain and drugs that make me fat is better than be dead. Take Care Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 1999 Report Share Posted October 21, 1999 Debbie, I can answer some of your questions. I used to have a a deep, burning, ache that felt like it was in the bone pretty much in every bone in my body. My rheumatologist treated me with a drug called plaquinel, usually used to treat patients with lupus. There are risks to this drug, but very rare. I had absolutely no side effects. After 2 to 3 years on the drug I was taken off and I rarely have any pain now unless I over do it. I had no inflamation and no diagnosis of lupus. When I first became sick in 1994 I slowly deteriated from my ability to function in school. I was 25 and the school director put me on a medical leave of absence and filled out the paperwork to apply for SSA and SSI. (IMPORTANT) When I was interviewed by phone from disability, I was told that they will routinely deny your application the first time, and she said for me to re-apply when this happens. She did not have to give me this info but knowing what to expect helped. I was denied the first time and re-applied. It takes about 2 years but most us are intitled, so don`t give up! I receive SSA now for going on 3 years. However I would not recommend letting go of life as you know it and your health statis unless you absolutely have to. Being deemed disabled is, I fined, sometimes very hard to deal with. I praise and envy those of you who have hung in there, I`am sure it has not been easy. I also did get very sick of being sick and stoped taking my meds. It didn`t take 2 months to go from normal liver levels to in the 400`s. I DO NOT RECOMMENT IT! I sure hpe this can be of some help! AIH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 Don, if you have SSDI, you have medicaid and dont need a private carrier. Medicaid pays for just about everything. J >From: " Don Hanson " <donhanson@...> >Reply- onelist >< onelist> >Subject: RE: [ ] Hello >Date: Sun, 24 Oct 1999 16:42:02 -0600 >MIME-Version: 1.0 >From errors-165537-7622-shireen42 Sun Oct 24 14:51:23 1999 >Received: from [209.207.164.235] by hotmail.com (3.2) with ESMTP id >MHotMailB9DCCA5B000AD820F3CED1CFA4EB09B70; Sun Oct 24 14:51:23 1999 >Received: (qmail 19242 invoked by alias); 24 Oct 1999 21:49:49 -0000 >Received: (qmail 19195 invoked from network); 24 Oct 1999 21:49:48 -0000 >Received: from unknown (209.207.164.239) by pop4.onelist.com with QMQP; 24 >Oct 1999 21:49:48 -0000 >Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by >mta1.onelist.com with SMTP; 24 Oct 1999 21:49:48 -0000 >Received: from donhanson (h-178-243.mn.mediaone.net [209.32.178.243]) by >chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id RAA09473 for >< onelist>; Sun, 24 Oct 1999 17:46:23 -0400 (EDT) >Message-ID: <002101bf1e70$fd38ed00$0100a8c0@...> >X-Priority: 3 (Normal) >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) >X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 >In-Reply-<004b01bf1c44$839fb920$a33604d0@dlk3cids> >Importance: Normal >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >Hi Debbie, > >I have pain in my legs, arms and wrists. The pain was controlled pretty >well >while I was on higher doses of prednisone (20mg and up), but I'm tapering >off of the prednisone now and I'm in a lot of pain. Pain while tapering is >pretty common and I hope it will become tolerable soon! > >Fatigue is the most debilitating part of the disease for me. Two years and >two appeals later I was approved for SSDI. It took my private carrier about >9 months to approve me. Every three months, my private carrier asks for an >updated doctor report (like I'm going to suddenly be all better!). > >The new healthcare portablility act prohibits a new carrier from excluding >preexisting conditions under most conditions if you have not let your >coverage lapse. I think there is a certain maximum period of time between >dropping one carrier and picking up the next. Check it out carefully before >you do anything. > >Don >AIH Minneapolis > > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 1999 Report Share Posted October 24, 1999 Hi Debbie, I have pain in my legs, arms and wrists. The pain was controlled pretty well while I was on higher doses of prednisone (20mg and up), but I'm tapering off of the prednisone now and I'm in a lot of pain. Pain while tapering is pretty common and I hope it will become tolerable soon! Fatigue is the most debilitating part of the disease for me. Two years and two appeals later I was approved for SSDI. It took my private carrier about 9 months to approve me. Every three months, my private carrier asks for an updated doctor report (like I'm going to suddenly be all better!). The new healthcare portablility act prohibits a new carrier from excluding preexisting conditions under most conditions if you have not let your coverage lapse. I think there is a certain maximum period of time between dropping one carrier and picking up the next. Check it out carefully before you do anything. Don AIH Minneapolis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Hi Debbie, My name is Lori C. and i had a liver tx on 3~11~97. I was diagnosed in July 1996, but was figured that I had AIH as long as since 1983~ that would be about 13 years I had it before I was finally diagnosed. I was one of the UNLUCKY ones and by the time I was diagnosed in July 1996, I was told I needed to be listed, so I was put through evaluation in Sept, and Oct. and then listed on Oct. 18, 1996, and was given 1 year to live, I had end~stage cirrhosis by that time. I was transplanted in March 1997 and the surgeon said the liver was so hard and so cirrhotic, It was amazing that I hade made it that long, and said without the transplant I would not have lived to see the summer of 1997. I guess in my case it was difficult because I was not diagnosed soon enough to be able to go into a remission state, and be o.k.. On meds. So I just have to thank God, that I did get a transplant. You know I thought before the transplant, man that just isn't going to be a very good life to have to live that way on meds, but life post~transplant sure beats living with the AIH. Take Care!! Lori C. AIH transplanted [ ] Hello >From: " debbie kearbey " <dlk3cids@...> > >Hello > I have a question to whom has had a liver transplant. How long have you >had AIH? When do they decide to do a liver transplant? I have had AIH for >a year now. Just curious about how thay decide all of these things. >Debbie-IL AIH > > [ ] Re Alternative treatments >> >Date: Mon, 25 Oct 1999 16:25:25 -0400 >> > >> ><< text2.html >> >> ><< text3.html >> >> >> >> >___________________________________________________________________________ _ >___ >> >___________________________________________________________________________ _ >___ >> >> > >>Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Hi Debbie, I had slightly elevated enzymes for 6 months, I developed my first symptoms 6 weeks before I was hospitalized and told I would need a transplant. Everyone's different, some people live with AIH for decades. Below is a page from transweb http://www.transweb.org/ I was never itchy or in any pain, nor did I suffer internal bleeding. I had 1/8 of my liver left 3 weeks before my transplant. Barbara Ann AIH Transplant Recipient A liver transplant is the only treatment available for most forms of " end stage liver disease " (ESLD). The decision to treat liver disease with transplant is one that should be made by persons expert in liver diseases and liver transplantation. A transplant is not reversible once it is done, therefore it is crucial that only patients that will benefit from transplant be transplanted. The liver does thousands of things to maintain normal life. It is also very able to carry on when it is diseased and therefore most people with liver disease do not require a transplant. However, once the liver has reached the point of " end stage " the progression from normal health can be rapid in some cases. No specific criteria for who should and should not be transplanted have been agreed upon. Instead, the decision must be made by an experienced team at a liver transplant center. No single piece of data can be interpreted in the absence of the overall picture of a person's health. General criteria for assessing the severity of liver disease are: Jaundice (caused by an elevated bilirubin ) Fluid retention (called ascites or edema) Fatigue Blood clotting studies (Prothrombin time) Indications of portal hypertension Muscular wasting Bleeding from the esophagus or stomach These criteria are weighed together with the clinical history of the disease (how long has each symptom been present, are the symptoms getting progressively worse, is it certain that the symptoms are due to the liver disease), the overall health of the patient, and the cause of the liver disease in order to determine if transplant should be considered. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Hi Debbie: I have had 3 biopsies. The 1st one in 3/97 to make a definite diagnosis & then was prescribed 20mg of prednisone & was gradually reduced for the 1st yr to 5mg. In 2/98 we moved to Az. I had to find a new Dr for the 3 mo. blood tests. I was very fatigued(thought it was from the move) but new Dr rquired tests & biopsy & found inflammation had begun so was put back on 20 mg of prednisone. Then gradually reduced to 10mg & began 50mg of azthioprine. In 3/99 he started gradually reducing again & increased the azathioprine to 100mg & by 5/99 I was off prednisone but still on 100mg of the azathioprine. Within 3 to 4 wks I was relapsing again. So another biopsy 7/30/99 & back on 10mg of prednisone which made me feel much better in a wk. Now I am reducing 1mg a mo. & he is requiring labs every mo to see how low I am going to be able to go. He said I most likely will be on 5mg forever along with the azathioprine. So along with labs, biopsy & ultra sound they determine how the treatment should be. I am still learning everyday & have learned more from this group & the web sites provided. I hope my schedule of events has given you some answers. Leona AIH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Don, I have medicaid, not medicare. It pays everything. J >From: " Don Hanson " <donhanson@...> >Reply- onelist >< onelist> >Subject: RE: [ ] Hello >Date: Mon, 1 Nov 1999 09:23:40 -0600 >MIME-Version: 1.0 >From errors-165537-7871-shireen42 Mon Nov 01 07:48:54 1999 >Received: from [209.207.135.253] by hotmail.com (3.2) with ESMTP id >MHotMailB9E70166005DD82197E3D1CF87FD1C8C0; Mon Nov 01 07:48:54 1999 >Received: (qmail 6735 invoked by alias); 1 Nov 1999 15:28:30 -0000 >Received: (qmail 6503 invoked from network); 1 Nov 1999 15:28:27 -0000 >Received: from unknown (209.207.164.239) by pop.onelist.com with QMQP; 1 >Nov 1999 15:28:27 -0000 >Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by >mta1.onelist.com with SMTP; 1 Nov 1999 15:28:43 -0000 >Received: from donhanson (h-178-42.mn.mediaone.net [209.32.178.42]) by >chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id KAA01761 for >< onelist>; Mon, 1 Nov 1999 10:28:42 -0500 (EST) >Message-ID: <000201bf247d$133dea80$0100a8c0@...> >X-Priority: 3 (Normal) >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) >X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 >In-Reply-<19991025020821.57317.qmail@...> >Importance: Normal >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >Hi , >The private carrier I referred to is my private disability carrier. >Medicare >doesn't kick in until 2 years after the date of disability. My coverage >starts in December. Even then, most people need or want a supplemental >plan. >Don > > RE: [ ] Hello > >Date: Sun, 24 Oct 1999 16:42:02 -0600 > >MIME-Version: 1.0 > >From errors-165537-7622-shireen42 Sun Oct 24 14:51:23 1999 > >Received: from [209.207.164.235] by hotmail.com (3.2) with ESMTP id > >MHotMailB9DCCA5B000AD820F3CED1CFA4EB09B70; Sun Oct 24 14:51:23 1999 > >Received: (qmail 19242 invoked by alias); 24 Oct 1999 21:49:49 -0000 > >Received: (qmail 19195 invoked from network); 24 Oct 1999 21:49:48 -0000 > >Received: from unknown (209.207.164.239) by pop4.onelist.com with QMQP; >24 > >Oct 1999 21:49:48 -0000 > >Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by > >mta1.onelist.com with SMTP; 24 Oct 1999 21:49:48 -0000 > >Received: from donhanson (h-178-243.mn.mediaone.net [209.32.178.243]) by > >chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id RAA09473 for > >< onelist>; Sun, 24 Oct 1999 17:46:23 -0400 (EDT) > >Message-ID: <002101bf1e70$fd38ed00$0100a8c0@...> > >X-Priority: 3 (Normal) > >X-MSMail-Priority: Normal > >X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) > >X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 > >In-Reply-<004b01bf1c44$839fb920$a33604d0@dlk3cids> > >Importance: Normal > >Mailing-List: list onelist; contact > > -owneronelist > >Delivered-mailing list onelist > >Precedence: bulk > >List-Unsubscribe: <mailto: -unsubscribeONElist> > > > >Hi Debbie, > > > >I have pain in my legs, arms and wrists. The pain was controlled pretty > >well > >while I was on higher doses of prednisone (20mg and up), but I'm tapering > >off of the prednisone now and I'm in a lot of pain. Pain while tapering >is > >pretty common and I hope it will become tolerable soon! > > > >Fatigue is the most debilitating part of the disease for me. Two years >and > >two appeals later I was approved for SSDI. It took my private carrier >about > >9 months to approve me. Every three months, my private carrier asks for >an > >updated doctor report (like I'm going to suddenly be all better!). > > > >The new healthcare portablility act prohibits a new carrier from >excluding > >preexisting conditions under most conditions if you have not let your > >coverage lapse. I think there is a certain maximum period of time between > >dropping one carrier and picking up the next. Check it out carefully >before > >you do anything. > > > >Don > >AIH Minneapolis > > > > > >------------------------------------------------------------------------ > >Please support the American Liver Foundation! > > > >1.) To subscribe send e-mail to -subscribeonelist > >2.) To UNsubscribe send to -unsubscribeonelist > >3.) Digest e-mail format send to -digestonelist > >4.) Normal e-mail format send to -normalonelist > ><< text3.html >> > >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist > > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Gayle, Why did they take it away? J >From: GALYE@... >Reply- onelist > onelist >Subject: Re: [ ] Hello >Date: Mon, 1 Nov 1999 14:35:39 EST >MIME-Version: 1.0 >From errors-165537-7878-shireen42 Mon Nov 01 11:35:46 1999 >Received: from [209.207.164.209] by hotmail.com (3.2) with ESMTP id >MHotMailB9E736920043D82197D5D1CFA4D11AC30; Mon Nov 01 11:35:46 1999 >Received: (qmail 570 invoked by alias); 1 Nov 1999 19:35:17 -0000 >Received: (qmail 555 invoked from network); 1 Nov 1999 19:35:15 -0000 >Received: from unknown (209.207.164.241) by pop2.onelist.com with QMQP; 1 >Nov 1999 19:35:15 -0000 >Received: from unknown (HELO imo-d05.mx.aol.com) (205.188.157.37) by >mta2.onelist.com with SMTP; 1 Nov 1999 19:41:23 -0000 >Received: from GALYE@... by imo-d05.mx.aol.com (mail_out_v23.6.) id >hMXC081Vxf (4225) for < onelist>; Mon, 1 Nov 1999 >14:35:39 -0500 (EST) >Message-ID: <0.d5f4b574.254f458b@...> >X-Mailer: Windows AOL sub 41 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >In a message dated 10/31/99 9:14:19 PM Mountain Daylight Time, >shireen42@... writes: > ><< 0 >> >Hi All, >I have ssdi and they took my medicaid away after 3 months. Plus they took >away my foodstamps. I am left to wonder how do I pay for my medicine, dr >visits. I am on a discount program my hospital, but still costly when you >don " t get squat to work with. Does anyone have any information on stats of >liver transplant patients going back to work? >gayle > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 In a message dated 10/31/99 9:14:19 PM Mountain Daylight Time, shireen42@... writes: << 0 >> Hi All, I have ssdi and they took my medicaid away after 3 months. Plus they took away my foodstamps. I am left to wonder how do I pay for my medicine, dr visits. I am on a discount program my hospital, but still costly when you don " t get squat to work with. Does anyone have any information on stats of liver transplant patients going back to work? gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Hi , The private carrier I referred to is my private disability carrier. Medicare doesn't kick in until 2 years after the date of disability. My coverage starts in December. Even then, most people need or want a supplemental plan. Don RE: [ ] Hello >Date: Sun, 24 Oct 1999 16:42:02 -0600 >MIME-Version: 1.0 >From errors-165537-7622-shireen42 Sun Oct 24 14:51:23 1999 >Received: from [209.207.164.235] by hotmail.com (3.2) with ESMTP id >MHotMailB9DCCA5B000AD820F3CED1CFA4EB09B70; Sun Oct 24 14:51:23 1999 >Received: (qmail 19242 invoked by alias); 24 Oct 1999 21:49:49 -0000 >Received: (qmail 19195 invoked from network); 24 Oct 1999 21:49:48 -0000 >Received: from unknown (209.207.164.239) by pop4.onelist.com with QMQP; 24 >Oct 1999 21:49:48 -0000 >Received: from unknown (HELO chmls11.mediaone.net) (24.128.1.112) by >mta1.onelist.com with SMTP; 24 Oct 1999 21:49:48 -0000 >Received: from donhanson (h-178-243.mn.mediaone.net [209.32.178.243]) by >chmls11.mediaone.net (8.8.7/8.8.7) with SMTP id RAA09473 for >< onelist>; Sun, 24 Oct 1999 17:46:23 -0400 (EDT) >Message-ID: <002101bf1e70$fd38ed00$0100a8c0@...> >X-Priority: 3 (Normal) >X-MSMail-Priority: Normal >X-Mailer: Microsoft Outlook IMO, Build 9.0.2416 (9.0.2910.0) >X-MimeOLE: Produced By Microsoft MimeOLE V5.00.2615.200 >In-Reply-<004b01bf1c44$839fb920$a33604d0@dlk3cids> >Importance: Normal >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >Hi Debbie, > >I have pain in my legs, arms and wrists. The pain was controlled pretty >well >while I was on higher doses of prednisone (20mg and up), but I'm tapering >off of the prednisone now and I'm in a lot of pain. Pain while tapering is >pretty common and I hope it will become tolerable soon! > >Fatigue is the most debilitating part of the disease for me. Two years and >two appeals later I was approved for SSDI. It took my private carrier about >9 months to approve me. Every three months, my private carrier asks for an >updated doctor report (like I'm going to suddenly be all better!). > >The new healthcare portablility act prohibits a new carrier from excluding >preexisting conditions under most conditions if you have not let your >coverage lapse. I think there is a certain maximum period of time between >dropping one carrier and picking up the next. Check it out carefully before >you do anything. > >Don >AIH Minneapolis > > >------------------------------------------------------------------------ >Please support the American Liver Foundation! > >1.) To subscribe send e-mail to -subscribeonelist >2.) To UNsubscribe send to -unsubscribeonelist >3.) Digest e-mail format send to -digestonelist >4.) Normal e-mail format send to -normalonelist ><< text3.html >> Please support the American Liver Foundation! 1.) To subscribe send e-mail to -subscribeonelist 2.) To UNsubscribe send to -unsubscribeonelist 3.) Digest e-mail format send to -digestonelist 4.) Normal e-mail format send to -normalonelist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Debbie: I had a liver transplant 10 years after being diagnosed with AIH. The rate of progression of the disease is individualistic. Some people may never need a transplant while others, like myself, did. The disease is unpredictable, so there are no absolutes. Hopefully, some day researchers may develop some more effective medications or learn how to completely wipe out liver disease. Until that time, we just have to live and appreciate every day. Bonnie Patten (NYS) AIH and post transplant Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 J. I am not certain why. The answer they have given me is I supposedly get the max. allowed for disability. I recieve $787 per month however when I add up my expenses per month it scares me, the social worker at the hospital keeps telling me not to worry because it won " t help my healing process. My problem is I live alone. I have asked them why I have a new liver if I can " t afford to keep up with it.Life is a challenge. Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 , Our son had Medicaid. It was great for him. Because he had ALS (Lou Gehrig's Disease), now thought to be an autoimmune disease, he also got additional help from the Muscular Dystrophy Association. They supplied him with an electric wheelchair, electrically controlled hospital bed and most of his medication which would have cost as much or more than $1000.00 each month. I wonder if there are similar groups like MDA for people with liver disease? Our other son, who is disabled now because of a deteriorating back condition, only has medical coverage from Workmen's Comp for his back condition. Even though he gets SSDI checks, he has no medical coverage for other medical problems that might develop. I think that Medicare starts for him this month, after a two year wait. He isn't eligible for Medicaid, they told him, because his combined SSDI and Workmen's Comp checks add up to too much income. Ha! He barely has enough money to survive. Take care, Geri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Hi Geri, the only help I am getting now is just the one check. On disability they figure thats more than enough help. I am still on oxygen and have been trying to get an extension for medicaid and I have no idea when that will happen, get a little sick of hearing their office tell me they are working on it. This is why I have asked this group the question of how they decide who gets transplanted. I certainly can " t afford this new life style and i really don " t have the energy to go back to work yet. Finding the right help takes all the patience I have. I am thankful to still be alive but I don " t need the stress. Gayle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Hi again, I am trying to find the positive in this all, I try to joke and keep laughing and keep looking. I hate this thought but I am so close to using my transplant as the advantage. I am still looking for where else to go,yet there is not alot of help for us. I am picking up some freelance work for cash. I shot a wedding two weeks ago and had to sleep for two days. Then I had hoped to go back to shooting for tci this month. I thought well I should be ok comming up on 5 months.But right now my body does not see this as an option. I tire easily and am still waiting for my strength to come back. I am not expecting much as far as aide anymore. Does upset me that my doctors have submitted me not to work for 1 to 2 years, Based on the severity of my illness. I do wish the system worked for the people who really need help. My whole life has been taken away when all this happened. So I feel pretty lost now. My next question is I was told I had to come up with money should I be hospitiliazed befor they will admit me,can they do that? Each of my inpatient visits were emergency bound when I could care less what my paperwork says.I can " t blame anyone for the crap the system gives us. Surely we can find help somewhere or can we. where do we turn? I can sypathize with and her depression. What they give us us to work with would test the patience of God. Gayle < ? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.