Guest guest Posted October 21, 2003 Report Share Posted October 21, 2003 Steph, this would have made me mad and crazy too, and i don't know how I would deal with it, honestly. F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2005 Report Share Posted May 12, 2005 Steph, My AMA was always positive - not sure it has been checked post transplant - it is an indicator of PBC. I know labs and what they mean, I just want to hear from ppl that have both PBC & AIH. Sorry I did not explain myself. And our Dear Joanne has emailed me a lot on AIH. My doctor at UVA is trying to get me Liquid URSO not available in the USA - you can get it in Canada. I have been given OFF GROUP suggestions and he is working one it & the Prograf - my anti-rejection meds should handle the AIH, he says. I am not new to this. Was dx with PBC in 1985 and tx in 1995 - so 20 years I have been dealing with labs - this just threw me a curve. The Doctor wants to see slides of last bx but they are at DUKE and that is A HUGE story in itself. Do not recommend DUKE, UNC or BAYLOR. I like this guy at UVA. I live in Raleigh NC - 30 minutes from DUKE and UNC. Thanks. Jo Lynne tx Baylor/Dallas May 15th 1995 re-occurrence PBC dx by bx '97 & '03 and May '05 now AIH - Oh Joy Oh Joy - but I have many things to do and photos to take and I still have my sense of humor and "A Heavenly Father" - that is so so so GOOD to me Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 so 20 years I have been dealing with labs - I haven't gotten everyone's stories down yet. Sorry for the repeat of what you already knew. So, they are now thinking overlapping PBC/AIH? I'm sorry but I don't know what URSO is. I live close to Canada - just about 4 hours. So, I hear lots of people talking about going to Canada for meds. anti-rejection meds are what I am currently taking to control my AIH. What will the URSO do? Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 Yes, the new doctor thinks I have overlap of PBC/AIH. URSO is to slow the progress of PBC. I have tried the pill form and with severe gastro paresis I cannot tolerate it, that is why he suggested Liquid URSO - not in the USA. We are working on it. URSO is explained in detail at http://www.pbcers.org go to site index. Steph, yes I have been dealing with Liver Enzyme #'s since 1985 when dx with PBC. I had my transplant (almost 10 yrs - May 15th 1995 - at Baylor) and I was told at that time it would never come back - that Transplant was a "cure". That was before ppl coming back for check-ups and bx's and it showed it had returned. Have a Great Weekend. Jo Lynne [ ] Re: Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 That is a good point (where to put the peg) I wear low waisted jeans (short) for the most part so would I want it as high as possible then so jeans wont rub? I dont know if I have any really good doctors each one has been a disappointment in some way or another - do you mean my GI or family phys? My family phys is the only one who offered to find me someone to get a peg in, if I werent complaining to the GI's noone would even care, I could vanish, local GI wants to find meds to help - well duh if food cant get down no medicine can fix that, and my GI at Mayo could only think of the partial esophagec. but he said that is for the surgeons to decide. I go to Baltimore Tuesday and will see what they think after they do their tests on me (same ones I had at Mayo). I havent shared w/Mayo that I am going to s Hopkins. I couldnt get in to see Mayo's new chief surgeon until mid March - good thing they take my problem so seriously (NOT!). I get my peg 3/7 here in town by a gen surgeon that has done a lot of them. > Thank you for the information. Here is why I am getting one...from > what I have heard from the doctors so far (I have two more to visit for > the final decision) I need a partial esophagectomy shich MIGHT help and > since I am not impressed with the overall recover rate/mortality rate > that I have researched, me and my family physician opted for the PEG > until I can become reasonably healthy again. I have been sick since +- > January 2005 so imagine my condition now, two surgeries later (the 2st > one was supposed to fix it!). I am SO underweight/malnourished and > cannot drink all those suggested vitamin drinks: ensure, boost, equate, > carn. ins. break, slim fast, zone, they ALL made me throw up when I was > pregnant (diagnosed with Achalasia at 5 months pregnant) so I cannot > even smell them without gagging. Thank you! Steph > > > > > > > need ideas to promote your fundraiser or business? > check out our new website! > wicked cat promotional products > www.wickedcatpromos.com > > > > > > --------------------------------- > Check out the all-new beta - Fire up a more powerful email and get things done faster. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 achalasiagoaway wrote: > ... GI wants to > find meds to help - well duh if food cant get down no medicine can > fix that, ... Many medications can be absorbed in the mouth and esophagus and don't need to make it through to the stomach to work. There are others that do need to pass though to the stomach. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 steph, be sure to call an achalasia doctor and see if the peg spot will affect a myotomy or fundo if you have one... rodeo season is just about here! Wa Hoo! Carolynachalasiagoaway <achalasiagoaway@...> wrote: That is a good point (where to put the peg) I wear low waisted jeans (short) for the most part so would I want it as high as possible then so jeans wont rub? I dont know if I have any really good doctors each one has been a disappointment in some way or another - do you mean my GI or family phys? My family phys is the only one who offered to find me someone to get a peg in, if I werent complaining to the GI's noone would even care, I could vanish, local GI wants to find meds to help - well duh if food cant get down no medicine can fix that, and my GI at Mayo could only think of the partial esophagec. but he said that is for the surgeons to decide. I go to Baltimore Tuesday and will see what they think after they do their tests on me (same ones I had at Mayo). I havent shared w/Mayo that I am going to s Hopkins. I couldnt get in to see Mayo's new chief surgeon until mid March - good thing they take my problem so seriously (NOT!). I get my peg 3/7 here in town by a gen surgeon that has done a lot of them.> Thank you for the information. Here is why I am getting one...from > what I have heard from the doctors so far (I have two more to visit for > the final decision) I need a partial esophagectomy shich MIGHT help and > since I am not impressed with the overall recover rate/mortality rate > that I have researched, me and my family physician opted for the PEG > until I can become reasonably healthy again. I have been sick since +- > January 2005 so imagine my condition now, two surgeries later (the 2st > one was supposed to fix it!). I am SO underweight/malnourished and > cannot drink all those suggested vitamin drinks: ensure, boost, equate, > carn. ins. break, slim fast, zone, they ALL made me throw up when I was > pregnant (diagnosed with Achalasia at 5 months pregnant) so I cannot > even smell them without gagging. Thank you! Steph> > > > > > > need ideas to promote your fundraiser or business?> check out our new website!> wicked cat promotional products> www.wickedcatpromos.com> > > > > > ---------------------------------> Check out the all-new beta - Fire up a more powerful email and get things done faster.> need ideas to promote your fundraiser or business? check out our new website! wicked cat promotional products www.wickedcatpromos.com Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Travel to find your fit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2007 Report Share Posted April 8, 2007 Thanks for the extra insight into root causes of symptoms Steph. A few of them hit home: > We need to sleep in a totally darkened room at night to ensure the > full functioning of the pineal gland, and normal melatonin levels. > > We need some sensible sunshine exposure (Vit D)during the day as new > research shows a definite, indication that a deficiency affects mood, > and immune system . Yep, the sunshine thing -- and not just for vitamin D. I have been susceptible to the winter blues, noticeably, since I came to the UK 13 years ago. When the clinical depression began in autumn 2004 it was like the whole baseline was lowered, and the winters became total hell. I am just starting to " thaw " from the most recent one and am experiencing mood swings from hypomania to death wishes. I've been through this twice before so it's par for the course. I think a little light therapy would really have helped, but since I came off Celexa I can't tolerate it. It makes my heart race. I'm still trying to work out how sunlight, melatonin, sleep patterns, seasons, etc all fit into the picture. Is it possible that due to biochemical individuality, there is a genuine biochemical imabalance in some people in the winters, resulting in SAD? Is this significantly affected by nutrition, health, etc? I'll keep an eye on how I go with this over the years I guess. Definitely, adequate sunlight is necessary for everyone to be healthy. Should be up there with good nutrition as a priority. My husband sits in a darkened computer den all day when the sun is shining because he doesn't have SAD and therefore seems to think he's immune. He also seems to think he's immune to the effects of not eating any fruit or vegetables some days, and a minimum on other days. Sigh . . . you'd think we could influence our families first and foremost don't you. So many people make themselves wilfully blind. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 How did your tests go? I hope well. Hugs, Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 Steph, I have been looking into a spa that has one but I am unsure if I can go with my hyperpigentation issues! I think I am going to get one of the heating pads - I love heating pads and my joint pain is very localized to either my hips of hands. Please let me know how the sauna works... I am sure it is going to do wonders for you!! Great buy too. Hugs, Lynn > > > > > > > > > > > > > > > > How did your tests go? I hope well. > > > > > > > > > > > > > > > > Hugs, Lynn > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 I am so sorry Steph Very sad... I can't imagine how you feel. I am the same with my step-dad. My mom and him married when I was 5 too! The only dad I have ever known, I don't know who my real dad is - he doesn't even know I was born (long story). Oh, if you see a comment on my My Space page from a Westberry - that was part of a search I did for my real dad. My real dad's name was Westberry and I found that on My Space - would be my real dad's age and all!! Plus, the were both in the Navy. I thought I had found him. Anyhow, my step-dad had a heart attack in May! They put stents in his heart and he survived and is doing better all the time. But it was so scarey. So, I can only imagine how you feel. Wow, long post back. You hang in there, you are doing the right things with the IV vitamins and now sauna. You'll get there. Hugs, CLynn > > > > > > > > > > > > > > > > How did your tests go? I hope well. > > > > > > > > > > > > > > > > Hugs, Lynn > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 Hi Lynn, I'll let you know how it goes. What exactly is hyperpigmentation? Steph > > > > > > > > > > > > > > > > > > How did your tests go? I hope well. > > > > > > > > > > > > > > > > > > Hugs, Lynn > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 Steph, When I go in the sun, my face gets brown patches on it (looks like dirt). I look like a reverse . It is not pretty, and hard to get rid of. I can get it to fade but I still have it. So, I have to wear hats now or sunscreen on my face. Sucks! I used to tan so nice too, I was a sun baby!! Always in the sun. Not anymore. DAMN IMPLANTS! Lynn > > > > > > > > > > > > > > > > > > > > How did your tests go? I hope well. > > > > > > > > > > > > > > > > > > > > Hugs, Lynn > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2008 Report Share Posted February 15, 2008 Lynn,I don't think a FAR sauna would cause any problems with hyperpigmentation . . . If you have any doubts ask a sauna specialist . . . The sweat from a FAR sauna is loaded with toxins. You won't get that with a pad.Of course, price and size may still be an issue.Rogene Quote Link to comment Share on other sites More sharing options...
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