Guest guest Posted July 4, 2002 Report Share Posted July 4, 2002 Hi Luanne, It was wonderful to get your e-mail. I totally understand how hard it is to keep up with all the mail. I have been having low grade fevers as well. The itching is getting worse as well, as the nausea and now I am having problems with diarrhea. I really think that I am having cholangitis and that it could overlap with the AIH, in the form of PSC. Thanks for your insight, you are such amazing encouragement to so many of us here. I love having other Moms to share with and also I like hearing your perspective because it gives me a glimpse at what my family experiences in relation to me. Looking forward to sharing more later. Love, Ruth > Hi Ruth.... > > I am truly trying to catch up with all the emails I have and wanted to get to > you ....even though I have been saving emails from you since the 17th....I am > soooo bad....and in my catching up with the reading I see alot more emails > from you that I really wanted to respond to.....so here goes....oh...maybe > you should pull up a chair....get comfy....ready... > > About trying to find a hepatologist....you are right that there are not many > and also some insurances...like yours doesn't seem to let you see them when > you do find them....as far as a teaching Hosp...that is a good place to > go....you will find all doctors....and hopefully your insurance will accept > that....lots of the GI's in teaching hosp are also specializing in > liver...that is what Ty's GI does....so we lucked out there.... > I am glad that you are not ignoring your problems right now....I don't think > you said that you were running temps though...usually with cholangitis you > also run temps.... > > Next...I see an email on the 29th on the PSC group....which I am also > on....so welcome over there too....lol...there are alot of great people there > also so you will get all kinds of answers there to your questions....I don't > really have an answer to your question but I am sure you will get some > answers soon.... > > Your next email was on the 30th...to PSC...your question was about others > having AIH...Ty was diagnosed with both at the same time...I am not sure how > many others have both....do your remember Aumesh...his son Raj....he is on > both lists...Raj was diagnoses with AIH first....and now they are thinking he > has PSC...and is on the psc group too.... > > It would be great if your friend could get your insurance to understand the > situation....the pred reduction could be causing you fatigue...that is rather > a fast reduction....I would talk to the doctor and hopefully he will do > something about it....Ty has really never had problems reducing because his > docs really take it very very slowly....to go from 40 to 20 would have taken > a couple of months...and then almost another 6 months to a yr to get > off...which he is now.... > > I am looking forward to see from you on either site.... > Life is just so busy right now that I am finding it hard to find the time to > read and write so I tend to mostly read... > > please take care and talk soon...I hope... > > Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Hi Ruth... I am sorry to hear that you are not feeling very well...I hope you get some answers soon and some help.... take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 Hi Luanne, It was so nice to hear about your time with your family. It is good to have a break, huh? It is the best medicine for your mother heart to see Ty enjoy being a teenager, I bet. I remember my Mom loving it when my brother was young with his juvenile diabetes. Kids like that grow up so quick, it is a real joy to see them with their friends. Luanne, no matter how busy you are, you always seem to have an encouraging word for others. I am so thankful to have you in our group!! This afternoon, I had the best time, my husband tilled up our raised beds and I planted tomato plants and green beans. I also planted some Cosmos flowers. Tomorrow, I hope to plant some more flowers. Even though, my energy has been kind of puny lately, I just decided I would sit down when I got tired and work as long as I could. It was so fun, to work in the soil and now I get to watch my garden grow, the best part!! It's late to be getting it in, but that's okay, I will still enjoy it. July 25, they are going to do another scan, not the MRCP but something like a Hiatal Scan, sp? I asked if they could see the hepactic ducts with it, and they said yes. I will not be too surprised if they find that I have PSC with the AIH. Actually, it would be a relief just knowing what is causing the pain and nausea. They started tapering me, from 40, to 30, than 20, boy what a number it did on my hormones today. I was in tears at the drop of a hat. I think they are doing it too fast, the nurse thought it seemed fast as well. I am in the process of asking for my HMO to allow me to have a consultation with a hepatologist. I found out the none of the G.I. doctors with the exception of one for my insurance has treated anyone with AIH, and the only hepatitis patients the one has treated is Hepatitis C. I have a doctor friend who is willing to write letters for me to get Kaiser to cover it for me. I'm sorry I am so long-winded here, I feel like you really understand the whole PSC/AIH combo with your experience with Ty. Luanne, take care, I will write later and let you know what happens with my newest scan coming up. Thanks for giving so much encouragement to those of us that are newly diagnosed, what a difference it makes having people in our lives who understand. Love, Ruth > Hi Ruth... > > I am sorry to hear that you are not feeling very well...I hope you get some > answers soon and some help.... > > take care and talk soon > Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 [ ] Re: Ruth.... Hi Luanne, It was so nice to hear about your time with your family. It is good to have a break, huh? It is the best medicine for your mother heart to see Ty enjoy being a teenager, I bet. I remember my Mom loving it when my brother was young with his juvenile diabetes. Kids like that grow up so quick, it is a real joy to see them with their friends. Luanne, no matter how busy you are, you always seem to have an encouraging word for others. I am so thankful to have you in our group!! This afternoon, I had the best time, my husband tilled up our raised beds and I planted tomato plants and green beans. I also planted some Cosmos flowers. Tomorrow, I hope to plant some more flowers. Even though, my energy has been kind of puny lately, I just decided I would sit down when I got tired and work as long as I could. It was so fun, to work in the soil and now I get to watch my garden grow, the best part!! It's late to be getting it in, but that's okay, I will still enjoy it. July 25, they are going to do another scan, not the MRCP but something like a Hiatal Scan, sp? I asked if they could see the hepactic ducts with it, and they said yes. I will not be too surprised if they find that I have PSC with the AIH. Actually, it would be a relief just knowing what is causing the pain and nausea. They started tapering me, from 40, to 30, than 20, boy what a number it did on my hormones today. I was in tears at the drop of a hat. I think they are doing it too fast, the nurse thought it seemed fast as well. I am in the process of asking for my HMO to allow me to have a consultation with a hepatologist. I found out the none of the G.I. doctors with the exception of one for my insurance has treated anyone with AIH, and the only hepatitis patients the one has treated is Hepatitis C. I have a doctor friend who is willing to write letters for me to get Kaiser to cover it for me. I'm sorry I am so long-winded here, I feel like you really understand the whole PSC/AIH combo with your experience with Ty. Luanne, take care, I will write later and let you know what happens with my newest scan coming up. Thanks for giving so much encouragement to those of us that are newly diagnosed, what a difference it makes having people in our lives who understand. Love, Ruth > Hi Ruth... > > I am sorry to hear that you are not feeling very well...I hope you get some > answers soon and some help.... > > take care and talk soon > Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 Ruth I will be thinking of you when you have your scan tommorrow, and pray that you will soon feel betteronce you know what it is you are fighting. Love and Hugs Jeanette UK AIH 1998 Cirrhosis 2001 hrby97111 <hrby97111@...> wrote: Hi Luanne, It was so nice to hear about your time with your family. It is good to have a break, huh? It is the best medicine for your mother heart to see Ty enjoy being a teenager, I bet. I remember my Mom loving it when my brother was young with his juvenile diabetes. Kids like that grow up so quick, it is a real joy to see them with their friends. Luanne, no matter how busy you are, you always seem to have an encouraging word for others. I am so thankful to have you in our group!! This afternoon, I had the best time, my husband tilled up our raised beds and I planted tomato plants and green beans. I also planted some Cosmos flowers. Tomorrow, I hope to plant some more flowers. Even though, my energy has been kind of puny lately, I just decided I would sit down when I got tired and work as long as I could. It was so fun, to work in the soil and now I get to watch my garden grow, the best part!! It's late to be getting it in, but that's okay, I will still enjoy it. July 25, they are going to do another scan, not the MRCP but something like a Hiatal Scan, sp? I asked if they could see the hepactic ducts with it, and they said yes. I will not be too surprised if they find that I have PSC with the AIH. Actually, it would be a relief just knowing what is causing the pain and nausea. They started tapering me, from 40, to 30, than 20, boy what a number it did on my hormones today. I was in tears at the drop of a hat. I think they are doing it too fast, the nurse thought it seemed fast as well. I am in the process of asking for my HMO to allow me to have a consultation with a hepatologist. I found out the none of the G.I. doctors with the exception of one for my insurance has treated anyone with AIH, and the only hepatitis patients the one has treated is Hepatitis C. I have a doctor friend who is willing to write letters for me to get Kaiser to cover it for me. I'm sorry I am so long-winded here, I feel like you really understand the whole PSC/AIH combo with your experience with Ty. Luanne, take care, I will write later and let you know what happens with my newest scan coming up. Thanks for giving so much encouragement to those of us that are newly diagnosed, what a difference it makes having people in our lives who understand.Love,Ruth> Hi Ruth...> > I am sorry to hear that you are not feeling very well...I hope you get some > answers soon and some help....> > take care and talk soon> Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2003 Report Share Posted February 3, 2003 Hey.... Have you had your Barium yet...Ty just had that a couple of weeks ago...follow up from the NIH...they ran out of time to get some of the tests done so we did that the same day as his Remicade.... I haven't seen an email from yet...but then again I am a couple days behind in the emails...so hopefully there will be one and I will get a chance to meet and talk to her..... Sure hope everything with the test went or goes well..which ever fits better...lol talk to you soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
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