Guest guest Posted September 19, 2000 Report Share Posted September 19, 2000 Hi Genny and welcome to the group...I am sure you have already received many welcomes and I as usual am late in my e-mail.... My name is Luanne and I also am a mom on the list....I have a 17 yr old son who has PSC...I have been on the list for 2 years and other lists for more than I would like to think about...Tyler has some other auto-immune diseases....He is a senior in HS... What is your daughters name....does she also have a computer....and is she interested in joining us....Tyler really wants nothing to do with being on the list....He just wants to do the things his friends do and go to school...and even there he is limited...so I don't push the group on him....He knows of some of the members because I talk to my husband about them...etc...but that is his limit here.... Well I hope to talk to you soon... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2000 Report Share Posted September 19, 2000 Hi Luanne, thank you so much for the welcome. My daughter's name is Jodi and she was diagnosed with AIH in Feb. and we were told she is in what they think is between the first and second stage of Cirrhosis. I say think because her platelets have not been high enough for her to have a biopsy. Her hepatologist says it is to risky and he can tell by the x-rays that there is cirrhosis. I am confused about some of these illnesses. Please tell me what Tyler has. My mother also has been diagnosed with TPI. Of course like AIH they don't know how you get it or why. Both are being treated with Prednisone. Where do you live? We live in central Florida and no my daughter does not have a computer. She has a 2 yr. old son and it takes all she can do to work and keep up with him. She is tired most of the time but thank the Lord she is still able and likes her job working for a pedo dentist. Enjoyed talking to you. I know you feel as I do, I wish it were me and not her. Take care and my best to Tyler. Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Thank you for your thoughts, prayers and support, I hope your daughter gets better also. Not very many people reply to my posts for some reason. I have tried to be friendly and helpful. My thoughts and prayers will be with you for your daughter also. God Bless, - Genny, do you know who left the group I must have missed something because I haven't felt well the last three or four days and have not been online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Genny-Thanks for writing back and I hope Jodi is doing ok, I think this disease make us all a little depressed sometimes. I appreciate your caring, Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 Genny Thanks for thinking of us....I know I tend to not post very consistently....wish I could...so many I read about and would like to write to.....I even save them figuring I will get back to them....never happens....I need more time in the day and more days in my week.....I guess we all could use that.... Ty is feeling better....the pred is helping with the size of his spleen....He has gone back to school...although Monday he ended up coming home with a migraine...it seems to always be something....we are waiting to hear from his doctors to see what they are going to do for treatment since he can't do the Remicade anymore....We should find out this week..... How is Jodi feeling.....I think I remember reading that she had bronchitis and that her lowering of pred was not going smoothly...Sometimes they have to go back up and come down more slowly...I know that when my boys were on it they would have to come down real slow and then go to an every other day dose....that always seemed to work better for them....I know I have read that some others on here have done the same....I guess some of our bodies just need more time to adjust,,,, Genny ...how are you doing....I know as the mom it is a tough job....I so want to put that bubble around Ty....hate seeing him not feel well....and I have been around this for a while....but this so new for you..... Tell Jodi we are thinking of her too.... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2000 Report Share Posted October 6, 2000 It is too bad that the people that you work with are not more understanding, but it's not happening to them so it dosen't matter. So many people don't understand liver disease even my own family they think just go on a diet and everything will be ok. I gave up trying to explain so I don't anymore. You know what really get's me is my girlfriends grandson was having a very bad time at 2 years old he had to have open heart surgery and they were having a benefit for him and there were two reporters there to do the story and we got on a discussion of different and I said what upsets me is that you never hear anything about liver diseases or for help that those people need and you know what his remark was I don't care how old a person is it's their own faults because all liver diseases are caused by booze they do it to themselves. I took one look at him straight in the eyes and said I don't and have never been much of a drinker and I have a liver disease he turned white as a ghost and I slapped him across the face he had me so upset I could have been arrested for assualt I quess, but he never did or said another thing, he attempeted to apologize by saying I quess I was playing God, but I walked away and all during the benefit he kept watching me probably thought I would plow him again. I am not a violent person but when someone that knows nothing about liver disease makes a remark like that it made my blood boil. Just wanted you to know that I know how hard it is to work with someone that dosen't understand. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 In a message dated 10/07/2000 12:40:56 AM Eastern Daylight Time, Babycolt98102690@... writes: << Some have said I though only alcohol caused Cirrhosis. >> Hi Genny, There are causes of cirrhosis, Hepatitis Cardiac Diabetes Alcohol and the rest are here... http://www.gastro.com/liverpg/cirrhos.htm My Primary Care Physician has a medical assistant, she was reading my chart when she was getting me ready for the doctor to come in...she turned to me and said as sweetly and nice as she could. " Joan, you don't look like an alcoholic, how did you get cirrhosis? " As Sweetly and nicely as I could, I replied, As a medical professional, first you should never prejudge someone because of the disease they have. Second, before you open your mouth about something you know nothing about, You should keep it shut, thus removing your ignorance. Third, I will educate you about my dragon disease I have been blessed with. Which I did and the doctor came in to see why she was with me so long. I told him with a smile on my face. She will ask me questions about the disease, that makes me feel good because she wants to learn. My Cardiologyst is studying the liver since I have hepatitis. He said I am a challenge to him....Wonder what that means????.....LOL...my husband says the same thing....LOL... Love ya'll, have a great day, remember to laugh all day. Laughter is music to the heart and very healing. Soooooo, laugh a lot, love a lot, and be healthy, especially love a lot, the more love you give the more you get in return..... Joan, Florida AIH, 1 Gall Stone, HBP Fox <A HREF= " aol://1722:http://www.foxdianasden.com " >Fox 's Den</A> <A HREF= " http://www.foxdianasden.com " >http://www.foxdianasden.com</A> Foxy's Health <A HREF= " http://www.foxdianasden.com/health.com " >Foxy's Health</A> <A HREF= " http://www.foxdianasden.com/health.com " > http://www.foxdianasden.com/health.htm</A> Liver Support <A HREF= " http://www.foxdianasden.com/liver support.htm " >Liver Support</A> <A HREF= " http://www.foxdianasden.com/liver support.htm " > http://www.foxdianasden.com/liver support.htm</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 ..... with all due respect.... Alcoholism is a disease also and deserves no less respect in of itself than say diabetes, cancer, or even AIH. The AMA recognizes it as a chronic, progressive disease with no known cure . An alcoholic drinks because he/she HAS to, it`s part of his disease and without help will die. An alcoholic is no less moral than anyone else and is not someone who should be looked down upon any more than the diabetic.. he needs help just as much as those of us with AIH. People who denigrate an alcoholic are ignorant and should be educated. (Please know this is not an attack on you.) To those peop[le who are being insensitive to you... a liver diseae is a liver disease no matter how you got it. love and serenity jerry transplant ``95 AIH `00 Multiple myeloma `97 recovered alcoholic 4/29/94--today It is too bad that the people that you work with are not more understanding, but it's not happening to them so it dosen't matter. So many people don't understand liver disease even my own family they think just go on a diet and everything will be ok. I gave up trying to explain so I don't anymore. You know what really get's me is my girlfriends grandson was having a very bad time at 2 years old he had to have open heart surgery and they were having a benefit for him and there were two reporters there to do the story and we got on a discussion of different and I said what upsets me is that you never hear anything about liver diseases or for help that those people need and you know what his remark was I don't care how old a person is it's their own faults because all liver diseases are caused by booze they do it to themselves. I took one look at him straight in the eyes and said I don't and have never been much of a drinker and I have a liver disease he turned white as a ghost and I slapped him across the face he had me so upset I could have been arrested for assualt I quess, but he never did or said another thing, he attempeted to apologize by saying I quess I was playing God, but I walked away and all during the benefit he kept watching me probably thought I would plow him again. I am not a violent person but when someone that knows nothing about liver disease makes a remark like that it made my blood boil. Just wanted you to know that I know how hard it is to work with someone that dosen't understand. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 Joan... this is the trouble with people from my point of view.. What does an alcoholic LOOK like? If you were to see me you would say the same thing... " you don`t look like an alcoholic. " Prejudice abounds.. ....... alcoholics look a certain way ....... cirrhosis means your an alcoholic ........ black people commit crimes ........ hispanics are lazy you get my drift... alcoholism is a disease that can affect anybody ... even you. jerry AIH MM alcoholic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2000 Report Share Posted October 7, 2000 mary, not only do outside people understand nor care about us with aih, i just came from my granddaughters birthday and one of my daughters friends that i am friends with also, but dont see a lot, said that my daughter said that i was getting better. A LOT THEY KNOW!!!!!!!!!!!if i was getting better, would i feel so damn misrable all the time. i told her on the outside i looked pretty good, but inside my liver is holding its own. i was upset with my daughter at that time but could not take it out on the friend. good for you to set that reporter straight. linda satx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2000 Report Share Posted October 8, 2000 Thanks Genny for thinking of my lab work, when you are going through so much. You take care of yourself. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2000 Report Share Posted October 11, 2000 Thanks for your prayers and support. (Mark's (AIH) Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2000 Report Share Posted October 18, 2000 Hi there....Thanks for keeping Ty in your thoughts....Hopefully he will start to feel better soon...still home from school...enough though at night he tells me " I am going tomorrw " ....I realize how tough this has been on him even though he loves to put up a front.... Monday when he was home from school I had to leave for a short time to visit my mom in the Rehab.....while I was gone he got one of his bloody noses.....and when I got home he sitting in a chair with bloody tissues all over....he was a little upset....I think just the fact that I wasn't here....he is so used to me being here....its that thing of even though he doesn't always ask for help he knows I am within yelling distance...and the bloody nose thing is rather scary...Its been the last 2 years that they come out of the blue and they are really hard to stop....Most likely because of his very low playlets....then tues I had to go to SS to get my moy on Medicaid...so had to be gone again....No nose bleeds thought....Now today I am leaving in about 30 minutes to go to the doctor with my mom...and then back to Rehab for a meeting to discuss her stay there and insurance stuff.....I will be able to run back home to check in on him but this running around is wearing me down.... How is Jodi doing.....Wasn't she going to see some new doctors in a different hosp....or am I getting people confused here....Not hard to do with so many people.... Well I have to get ready to run for the day.... Take care of yourself and let Jodi know that there are people out here who think of her... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 Genny, i am looking into the new doctor now. As i was telling another, the dr is retiring in 3 years so we just as well find another one anyway. I called for an app today and he can not see him until Nov 10th. That upset me. I think that .. .. we;; i am not sure what i think. The nurse told me that this was perfectly normal and that as long as they were monitering his labs every one to 2 weeks, which they are, that there is really no rush to see him. I just don't know.. The nurse will talk to me forever and ever and she is supportive but i want more. Someone tell me this.... is it important to know what type of AIH you have and if so why? that has been worrying me. Hunt had a good day yesterday due to the pred BUT the KID felt so good that he went out with friends last night, behaved but since he did not have class today, he stayed out till about 3am and slept till 2 pm today. This cannot be good for him. He said i just felt so good and i haven't felt like doing anything lately. No doubt about it, he is still a teen. Love to you and Jodi Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 Rosemary, Your son may feel good and try to push his limit we all do that. But be prepared to suffer for it. Many of us try to take advantage of the good days but the body will take you down and let you know you have done way to much even on Pred. joint pain, fatigue, weakness. All over sick feeling and affecting his labs. This will be where the depression can take over. When you are forced to slow down. I use to work two businesses and played hard sometimes not sleeping for a day and a half when I got sick. I almost died for my lifestyle but I couldn't accept being sick. Now I am lucky to keep up with my house cleaning. Taking naps is much better. gayle/trans.6-99 galye@... ^0^ ` Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2000 Report Share Posted October 26, 2000 Shireen my doctor gave me priority precisely because I am on immunodepressants ...... His other patients had to get on a waiting list..... you might see if that holds true with any of your doctors..... jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 ..... Bactrim is prescribed to liver transplant patients as a guard against pneumonia. Because transplant receipients must take immunsuppressants every day for the rest of thier life they are particularly prone to viral pneumonia.I took it after transplant but for some reason it wasn`t deemed good for me. Instead I would go to the Cleve Clinic regularly and go trough a procedure where I inhaled an antibiotic.I went 8 (?) times or so and they didn`t reshcedule me so I thought nothing of it. Apparently, though I should have either been rescheduled or given a script for Bactrim. I know other transplants who take Bactrim regularly 3-4 times a week. Wouldn`t it seem likely if Bactrim were that harmful to a liver no one would be scripted it? I received a very healthy liver as do most transplanted people. Lots of things are hard on livers but we ingest them every day. It`s when one has advanced liver disease that he must be careful what is taken . They were surprised when I told them I hadn`t taken Bactrim in over 4 yrs, and told I was suppose to be on it. I replied that I didn`t know that as I had never been given a prescription, Of course now I been Dx with AIH, so I don`t know what the deal is. I`m supposed to see the Hep. on my transplant team next week so I guess I`ll find out. In the meantime I was reminded to get a flu shot And also a pneumonia shot.,.. which I did. Jerry Jerry - Are you aware that Bactrim is not a liver friendly drug? I was on it for seven days, twice a day and really paid for it with upper right quadrant pain and nausea. Why do the doctors want you on Bactrim if you don't mind me asking? Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2000 Report Share Posted October 27, 2000 ..... I looked up Bactrim.... and it said essentially what I just posted.... it is given to patients who are immunosuppressed as protection against pneumonia. It is contraindicated in patients with MARKED hepatic Damage.......( it is not friendly to those livers that are in advanced stages of liver disease....cirrhosis).... but healthy livers handle it just fine. It is a very common drug and is used exstensively. My liver is still fairly healthy. We can`t be afraid of everything or we would have no life. Respectfully Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Hi Jerry, no I haven't gotten my flu shot yet. Jodi was suppose to find out about her having one, will have to ask her if she did. Yes, she is feeling better. The Prilosec is helping a lot. She now has to stay away from green leafy veg. I don't know what she is going to live on. Take care, and have a good week. God bless, Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Hi Genny, How is Jodi feeling? I hope she is doing better. Sorry it took me so long to write back.... May I ask how old she is and when she was diagnosed? She is in the cirhossis stage of AIH? I'm so sorry to hear that... I bet Colton is the light of her life! Is she able to work or is she on disability? thanks for your support, Beth, AIH 10/00, MI Re: [ ] Beth > Hi Beth, how are you today? Jodi was doing OK but last couple of labs have > not been very good and I had her in the ER Monday night with terrible > abdominal pain. The ER doctor was on the phone with her Gastro Dr. many > times. He found she has a kidney infection and also gastro.....itis don't > know why to spell it. She didn't have to spend the night but had to see > Gastro. next morning. He gave her med. to help her stomach so she can keep > food down. She takes 22 pills a day and as you will find out your stomach > pays big time. She has the pictures of her endoscopy and it looks > awful...........Yes, she has a little boy (Colton) that's two and a half. > They waited six years before having a child and thank God they had him when > they did. Her Hepatologist in Miami told her what ever she did not to get > preg. With her platelets being so low she would bleed to death. Beth if I > were you and wanted more children I would talk to the doctor about having > them as soon as possible. Please understand, I'm not trying to scare you but > in Jodi's case we know things are going to get a lot worse before they get > better. We know she has cirrhosis and her Hepatologist said it's only a > matter of time before he will put her on the transplant list. We go back to > see him Nov. 20, which is a four hour drive for us. Even though it's hard, > keep a positive attitude, that goes a long way in helping your health. Also > pray the research they are doing will have a breakthrough..........Hug that > baby of yours for me. Take care and God bless. Write anytime about > anything. Genny/Jodi's Mom/Florida > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2000 Report Share Posted November 11, 2000 The Carolina's are beautiful and really not all that cold. We MAY have one snow fall a year but that is about it.. I used to live in Clearwater, Fl. We loved it and hubby would move there tomorrow if he could but I couldn't stand the heat. Maybe your husband and I should get together and you and my husband. LOL Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2000 Report Share Posted November 19, 2000 Hi Genny, Have a safe trip to Miami tomorrow. I hope you find out good things. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Genny, I didn't remember that Jodi was just diagnosed in Feb. WOW, things really moved fast didn't they? I am really sorry that ya'll are having to deal with this. What made them come to the conclusion that she needed to be on the list? Did her enzyme level ever get to normal? Do they think that she had AIH for a long time before she was diagnosed? I just didn't know that this COULD happen this fast. I am just really dumbfounded. You two are in my prayers. Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 Thanks for the kind words and prayers Debra. Love, Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2001 Report Share Posted February 4, 2001 Hi Genny, I stated going to the U of M in 1967. I was driving down the street one day and I started see double as the ripe old age of 21, and I had just had a baby then 6 months old. The eye doctor referred me to the U of M department of Neurology for testing to diagnose my problem. I saw a Dr Darroff, who after all these years I still keep in touch with. I was diagnosed with Myasthenia Gravis after 8 years in went into remission and have not heard from it since. Thank God. So when I was diagnosed with PSC I immediately called him he is now at Case Western in Ohio, And he told me to see no one else expect Dr Schiff or someone from his group. He said they are the best, and they are. Myasthenia Gravis is also an Auto immune disease. I don't know much about AIH, a little since I found the group. Prays & good health. Judy Quote Link to comment Share on other sites More sharing options...
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