Guest guest Posted July 7, 1999 Report Share Posted July 7, 1999 Oops! Penny had sent this from the archives to me! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Marcia do you know anything about Killenburg at Duke? Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Marcia, i am not sure how much you have read my post so don't know what you know about my situation. It is my 19 year old son that has AIH. His name is Hunt. He is a freshman at UNCG. He was also a freshman there last year but had to drop out basically cause no one knew what was wrong with him. We were in Ireland over Thanksgiving of last year and we noticed that he was yellow. THEN he told us that his urine had been the color of pepsi for a month. We took him to the hospital in Dublin where they admitted him for 3 nights. Of course, they figured it was hepatitis a,b or c BUT the test were all negative, They would not let him fly home for a week cause since they did not have a clue what was wrong and his alt's and ast's were both in the 1000's , they did not know what the altitude would do. Well we finally convinced them to let us fly home and we were referreed to Killenburg. He set up a biopsy almost immediately and so early Jan he was diagnosed and put on prednisome. Well the numbers decreased and all was well UNTIl the flare up, so this time imauran was started. He had been taking 100mg of imuran a day and was down to 20mgs of pred when he had another flare up. Killenburg increased pred to 30mgs daily but his urine is now the color of pepsi again. So here we go again to say the least. As for killenburg, i do not know how i feel about him. He does not give me much info. He never even told Hunt to take antibiotics before dental apps.. Actually he has not even seen Hunt since May. He recieves his labs either weekly or bi-weekly and calls him, or Nurse calls him and tell him what to do. Sometimes i feel like he is too laxidasical (Sp). Hunt is no where near the transplant list either but that is just who he goes to. So you like this other dr more? I sometime want to change. I know Killenburg is retiring in 3 years.. maybe that is why he is like he is. Do you know what type of AIH you have> Where are you from? I am from Oxford. My e-mail is mamacdoo@... so please write me. I am so glad to find someone that is close and at least has an opinion on the docs that i know. Thanks sooooo much Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Rosemary, I am convinced that all the hep docs, transplants, GI docs won't give you info not like this group. Some of the docs told me that less information is better because patients tend to project or get worked up the liars. I want to know every step of the way. If you do get info from them they will answer only what you ask and no detail. Takes creativity to get answers beyond from doctors. You have to know how to ask them. Or in my case I am not a good patient so I try to be nice but I can usually piss off my docs very well in a short time but I get answers. gayle/trans.6-99 galye@... ^0^ ` Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 Dear Marcia, I just read your post. I am so, so sorry. What an ordeal and how scary. It is truly wonderful to just know that you are still hear with us. Obviously, God has a plan for you. You were not ready to leave this earth. You see...you are too important here. I am very glad that you are on the road to recovery. Please keep us posted, and thank you for the advice. There are a lot of us here, including me, that probably would of done the same thing. I think it's a "pride" issue with me, or just trying not to be such a "baby", but your advice is very good for us to hear and learn from. You rest and be well. Love.Sue #2 -- My most recent adventure and what I learned - Hello friends -I have been catching up on posts and would like to join in welcoming thenewcomers to our group. And it was soooooo great to get a post from Cat!Now for my story.I had some abdominal pains while at work, and went to the bathroom thinkingit was cramping from overindulging on some great dried figs. Unfortunately,that was not the problem, and the toilet filled with blood that just seemedto keep dripping out of me.Well, I should have gone straight to the ER then, but that had neverhappened before, so I called my doctor but only talked to the nursepractitioner who thought it might be hemorrhoids and if it happened againto go to the ER. Well, it didn't happen again, but I had pain in my abdomenall night and it wasn't intense, but it was very uncomfortable.The next morning I called the doc again and talked to him. He said I shouldgo to the ER because he did not have needed equipment in his office todiagnose.My hubby hauled me off to the ER, where they did blood work, X-rays and aCT scan. It was the latter that showed "air in the abdominal cavity." Ididn't know what that meant but quickly figured out it was not a goodthing. The resident explained that it was there because there had been arupture somewhere in the bowel, most likely of some diverticuli.They scheduled immediate surgery, and I woke up the next morning in theICU, with a colostomy bag (it is temporary, thank god) and an open woundthat needed to heal "inside out."Now, this is the important part for all of us to remember - the residentsaid to me that the way a presented in the ER and to them gave them noindication of how serious the problem was that they found inside. He saidthat if someone who was not immunosuppressed had this condition, they wouldhave been in enormous pain and would have appeared at the ER much sooner. Iconfirmed this with my rheumy later, who said that I was "not a complainer"but that when something so different happened to me, I should indeed godirectly to the ER.I know none of us like the ER and trying to explain our condition. I amlucky in that the large metropolitan hospital I go to has/had doctors whoactually did know about Stills and, of course, my rheumy was there forconsultation. So why did I wait? I sure don't know now. Probably falsepride of some strange sort, and thinking I should "tough it out." From nowon, I will be more humble. I urge you all to do the same.I am recovering well. Saw both surgeon and rheumy last week and both said Icould go back onto my kineret and mtx. I am truly blessed to be alive anddoubly blessed that the Still's was quiet even while I was off the meds.Maybe even the Dragon felt sorry for me.Truly taking it one day at a time -love to allMarcia Marcia Treffmanmartreff@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2003 Report Share Posted June 3, 2003 Thank you for letting me into your personal story. I hope too, that I will remain healthy...but knowing people like you are around if it comes back gives me comfort SM >From: " Marcia Treffman " <martreff@...> >Reply-Stillsdisease > " Stillsdisease " <Stillsdisease > >Subject: Remission >Date: Mon, 2 Jun 2003 21:03:34 -0500 > > >Congratulations Superman on your remission. As we know, there are those who >go into remission and the disease never comes back. I sincerely hope this >is your story. I think that getting yourself into such good shape and >keeping it up is all to the good. > >Like Tricia, I went into two drug free remissions after having taken only >prednisone. (This was 20 years ago and there wasn't much else available >then anyway.) When the dragon came back, it stayed, but the new medications >can make the story so different for people who get the disease now or who >come out of remission. > >Certainly, do go on enjoying and celebrating every day. One day at a time >is all any of us have. Hopefully your dragon has been banished, but should >it return, as Bob says, " We will win. " > >Marcia > > >martreff@... > _________________________________________________________________ MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*. http://join.msn.com/?page=features/virus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2007 Report Share Posted February 15, 2007 Thank you for your respond on just using embrel. I also take arava too. I have done great on embrel. I had to go off of it for 3 months because I had a total wrist replacement 21 months ago and have had 6 surgeries after that on my wrist. My body rejected the replacement. But now that all of the plates and screws are removed and my bone graph is starting to do good. (had wrist fused) I am now back on my embrel. Good luck to you stay warm its cold here to I live in Michigan. Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2007 Report Share Posted February 17, 2007 Rhonda, Where in Michigan do you live? I am in Westland! Rhonda <unclebad@...> wrote: Thank you for your respond on just using embrel. I also take arava too. I have done great on embrel. I had to go off of it for 3 months because I had a total wrist replacement 21 months ago and have had 6 surgeries after that on my wrist. My body rejected the replacement. But now that all of the plates and screws are removed and my bone graph is starting to do good. (had wrist fused) I am now back on my embrel.Good luck to you stay warm its cold here to I live in Michigan.Rhonda Have a burning question? Go to Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2007 Report Share Posted February 18, 2007 Hi This is Rhonda I live in Waterford. Its nice to know someone who lives near me! How long have you had RA? > Thank you for your respond on just using embrel. I also take arava too. > I have done great on embrel. I had to go off of it for 3 months because > I had a total wrist replacement 21 months ago and have had 6 surgeries > after that on my wrist. My body rejected the replacement. But now that > all of the plates and screws are removed and my bone graph is starting > to do good. (had wrist fused) I am now back on my embrel. > Good luck to you stay warm its cold here to I live in Michigan. > Rhonda > > > > > > > > > --------------------------------- > Have a burning question? Go to Answers and get answers from real people who know. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 Rhonda, I was diagnosed about 11 years ago. I am now 35. I have been married 14 years and I have two kids 12 and 6. I think I've had RA since I was in Jr. High School. Atleast thats as far back that I can remember having pain. I remember my mom telling me it was just growing pains. My symptoms got more persistent and more painful after I gave birth to my son. After I had my daughter in 2000 was when it was at its worse. I was lucky that I didnt take any meds while being pregant with my daughter but I didnt get back on meds quick enough after having her. BIG MISTAKE! I wish I could do her first year over again. I am done having kids now though. Mine are 6 years apart because of the RA and other health issues but I am very happy with the two I have. I havent worked since my daughters birth and I'm not really sure what I could do. I babysit right now and I'm not really happy doing it. Its hard to watch other peoples kids. Especially when you dont agree with their raising. Wow I could go on and on. I better take a break LOL...Hope to talk to you again soon neighbor. Rhonda <unclebad@...> wrote: Hi This is Rhonda I live in Waterford. Its nice to know someone who lives near me! How long have you had RA?> Thank you for your respond on just using embrel. I also take arava too. > I have done great on embrel. I had to go off of it for 3 months because > I had a total wrist replacement 21 months ago and have had 6 surgeries > after that on my wrist. My body rejected the replacement. But now that > all of the plates and screws are removed and my bone graph is starting > to do good. (had wrist fused) I am now back on my embrel.> Good luck to you stay warm its cold here to I live in Michigan.> Rhonda> > > > > > > > > ---------------------------------> Have a burning question? Go to Answers and get answers from real people who know.> Food fight? Enjoy some healthy debatein the Answers Food Drink Q&A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2008 Report Share Posted May 13, 2008 Marcia, We can add a block to our own email inboxes too, if we need to do that. I agree with you that this inundation of information is unnecessary and overwhelming. I hope Ken will step in and rememdy this. Do we have a troll here????? diane in MI The Treatment of Poliomyelitis and Other Virus Diseases with > Vitamin C Fred R. Klenner, M.D. 1949 > > http://www.whale.to/v/c/klenner3.html > > --- End forwarded message --- > > > > > > Quote Link to comment Share on other sites More sharing options...
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