Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Hi Jerry, how are you today? I kept Colton for Jodi this afternoon and they just left. She seemed to be feeling better today. Yes, someone has to die for another to get a transplant but the way I look at it they are going to die anyway and there is nothing we can do about that. My body will not need the organs in the ground so I don't understand people who do not want to donate. I felt this way long before I knew Jodi would need a liver someday. Cheryl was telling me last night about her living donation to her husband Randy, very interesting. She gave me a number to call to talk to someone about it and I intend to talk to Dr. Reidy in Miami also. She says Randy is doing very well. Better check the rest of the mail. Talk to you later. Take care and God bless. Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 Thanks for the info on the Bactrim I forgot that you have had a transplant. I just get very discouraged with doctors when they don't realize what they are giving us and that it is hurting our liver. Thanks again Jerry, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 It's just that before some people were offended by discussing bowel movements and colors of stools, they didn't think it was appropiate. We all do it everyday and color is important apparently they don't have those kinds of problems. Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2000 Report Share Posted October 28, 2000 I know what you mean ...... Hang in there ,everything will be alright. I`m praying for you. love and serenity jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2000 Report Share Posted October 29, 2000 Excersise and Weight Loss did you say Jerry lol I do good for awhile and get very irritated when I see a 300lb healthy person sitting down and eating a hot fudge sundae, when I am hungry I don't care how many diets they put you on you are still starving. Hug's, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2000 Report Share Posted November 2, 2000 Jerry, thanks for the info on red meat and salt. Someone on the list told me to watch it, so I just wanted to know. I didn't realize that it was more important when you have cirrhosis.... I am cutting down on salt because of the water retention with the steroids...don't mind that. Just watching extra table salt. The red meat would be hard, so I'm not going to do so until I HAVE to! thanks, Beth Re: [ ] Beth to Genny > Beth...... I really don`t think you have to worry too much right now > about salt or red meat unless you`re in advancing stages of cirrhosis. > i.e. you have ascites or edema and/or exhibiting signs of > encephalopathy. It would be healthier though to cut back some on your > salt intake and watch your protien consumption, but as long as your > liver is functioning well enough I wouldn`t worry too much right now. > > Jerry > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2000 Report Share Posted November 7, 2000 sounds like what i thought was my hernia Jerry but ultrasound shows many stones in my gallbladder.Check is out Rosemary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2000 Report Share Posted November 23, 2000 Hi Jerry, I agree with you all the way. If a liver becomes available before Jodi gets into to much trouble we would take it. The transplant team has already contacted Jodi. Dr. Reddy told us it would be four to six weeks. They were asking her a lot of questions in detail about a living will. I just found out last night Jodi doesn't want me to be a living donor. She said if anything happened to me she wouldn't be able to live with herself. She was telling her Dad this when I wasn't around. Lot of thinking and praying to do. Hope your having a great Thanksgiving. God bless, Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2000 Report Share Posted November 26, 2000 Genny.... I know Miami is great center. A friend`s brother was transplanted there 2 yrs, ago and he`s doing great.The clinics gasto/hep center in Ft. audedale doesn`t do transplants there but rather refers its patient`s to the main hospital in Cleve, where I had my transplant, it`s also where Cheryl & Randy had thier living donor Tx. The first year success rate at the Clinic is now over 90%. I understand Miami may be the same. What I`m saying is transplant is not the big fearful thing it sounds like but rather a solution to one`s liver disease. God will provide. Jerry Hi Jerry, I agree with you all the way. If a liver becomes available before Jodi gets into to much trouble we would take it. The transplant team has already contacted Jodi. Dr. Reddy told us it would be four to six weeks. They were asking her a lot of questions in detail about a living will. I just found out last night Jodi doesn't want me to be a living donor. She said if anything happened to me she wouldn't be able to live with herself. She was telling her Dad this when I wasn't around. Lot of thinking and praying to do. Hope your having a great Thanksgiving. God bless, Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Yes Jerry, I don't think Jodi's worry is the transplant itself but how long until the AIH attacks the new liver. I told her just think positive, no one knows for sure. She may be one of the lucky ones that God smiles on and never has another problem. Wouldn't that be great, wish that for everyone in this group. Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 Dear Jerry. You seem to have a lot of information about the FL contacts I may want to try to reach. My diagnosed AIH have progressed to severe cirrhosis and I really don't find anyone here able to talk about transplants..I'm 45 with 2 kids and their dad just died from celebellar malignant tumors last year. Please try to contact me: dagelo@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 I had liver tx 3~11~97 I will be glad to answer any questions!! Lori C. Re: [ ] Jerry >Dear Jerry. > >You seem to have a lot of information about the FL contacts I may want to >try to reach. My diagnosed AIH have progressed to severe cirrhosis and I >really don't find anyone here able to talk about transplants..I'm 45 with 2 >kids and their dad just died from celebellar malignant tumors last year. > >Please try to contact me: >dagelo@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2000 Report Share Posted November 27, 2000 ...... I really don`t know too much about Fla. as I live in Akron, Ohio. There are many people here from Fla. who go to U of Miami, which I understand is an excellent transplant center. I was transplanted in Cleveland at the Cleveland Clinic Foundation. CCF is recognized as one of the top five hospitals all around in the U.S. Depending on who`s doing the rating it is #1 or#2 in gastroenterology/hepatology and they performed thier 1st liver transplant in 1984. They are reknowned as one the leaders in AIH research and were one of the 1st to recogonize this autoimmune disease. They also are one of the top transplant centers in the world and are pioneers in living donor transplants (see cheryl and randy`s story) My surgeon Dr. has won many honors and awards in the field of liver transplantation and is revered almost God- llke by his fellows and staff. I am extremely blessed to be a patient of thiers. They have a hospital branch in Ft. Lauderdale which although it doesn`t perform transplants refers its listed patients to the main hosp. in Cleveland. It may be worth checking out. They have a homepage on the web which I believe is www.clevelandclinic.org but I found them in search by typing in Cleveland Clinic and I`ve saved it under favorites (bookmarked) I have a wonderful gastro/hep here in Akron who refered me to them and U. of Pittsburgh when it became evident it was Tx or die. My medicaid forced me to CCF and I`ll never be sorry. I got my doc. here in Akron by referal from the ALF. and I recommend it as a way to hook uo with a liver specialist. I see him 4 times a year now and I have monthly blood tests that are sent to him and the clinic . My transplant team meets every Weds. to review all patients and they always review my bloodtests and call me when something is not right. When my Sept. LFTs were elevated both thet and my local doctor contacted me immediately and I was at the clinic for biopsy within 4 days. Hence the AIH Dx. I was put on prednisone 30 gms. and am now on 10mgs indefinetly. I get bloodwork weekly and a transplant coordinator calls me weekly. I get blood drawn tomorrow and am looking anxiously to the results as I`m in the midst of my 2nd cold in a month and 3 people have told me I look jaundiced.....hmmmm. As far as Miami goes the peope here from Fla. can tell you what you need to know. As I said a friends brother was tx`d ther and talks very highly of it. Sorry for the length but that`s one of my character defects. Love and serenity Jerry Tx `95 AIH 00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2000 Report Share Posted November 29, 2000 Jerry, Thank you so very much for your info...in fact, I will be going to Miami to visit with the team in Feb. Stay in touch with me. Your heart is so full of help and love, denise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 Hi Jerry, as you may have already read my post to Rosemary Jodi heard from the team today. Dr. Reddy had already given Jodi a list with the tests she needed to have done prior to getting on the list. A dental exam was one of them and we all laughed since Jodi and I both work at a dental office. Since we are considering a living donor transplant they are moving things right along. Will be spending two days in Miami the week before Christmas to take some kind of classes. Guess I will know a lot more when we get back. Take care and have a good week end. Genny/Jodi's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 Thanks for the well wishes Jerry. I knew blood type matters but size most matter too because Jodi said I would have to have a scan to see how big my liver is. It seems to me the bigger my liver the more of it they would be able to give to Jodi. Does that sound dumb? Well, we will know a lot more soon. Take care and hope you are feeling good. God bless, Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 You're welcome Jerry! Do you have AOL instant messenger from the internet? Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 Genny.... I could only speak from my experience and that is what I was told about receiving a whole liver from a donor...... but I`m glad to see Cheryl`s post explaining live donations. It makes more sense that it may be more complicated that way . Thanks Cheryl if you`re reading this! jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 Cheryl.. I have MSN instant messenger service. I can`t exchange messages with AOL users, but AOL users can get on MSN by conacting http://messenger.msn.com and downloading it for free which enables me to exchange messages. Webtv isn`t very compatible with AOL. In fact AOL seems to be pretty finicky. When I send some forwards to friends with AOL they sometimes can`t open them and vice-versa. Jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 Jerry, I don't look at it that way. The person that donated the liver was going to die and there is nothing you could do about that. We all have our time and only God knows that time. The donor was a good, giving person who knew they would not need their organs after death. I decided to be a donor years ago and don't understand why all people wouldn't want to be one. Genny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 In a message dated 12/10/00 3:23:14 PM Pacific Standard Time, Babycolt98102690@... writes: << Jerry, I don't look at it that way. The person that donated the liver was going to die and there is nothing you could do about that. We all have our time and only God knows that time. The donor was a good, giving person who knew they would not need their organs after death. I decided to be a donor years ago and don't understand why all people wouldn't want to be one. Genny >> This reminds me that one of the things I need to find out is whether AIH precludes me from donating organs. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2000 Report Share Posted December 10, 2000 Harper that depends... you got any good parts? In a message dated 12/10/00 3:23:14 PM Pacific Standard Time, Babycolt98102690@... writes: << Jerry, I don't look at it that way. The person that donated the liver was going to die and there is nothing you could do about that. We all have our time and only God knows that time. The donor was a good, giving person who knew they would not need their organs after death. I decided to be a donor years ago and don't understand why all people wouldn't want to be one. Genny >> This reminds me that one of the things I need to find out is whether AIH precludes me from donating organs. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 In a message dated 12/10/00 8:36:35 PM Pacific Standard Time, gefox@... writes: << Harper that depends... you got any good parts? >> I could answer your question more to your point if I could see the previous correspondence, see what you were responding to. On its own, to the question " You got any good parts " -- my parts were a lot better before May. I spent the weekend before I learned I was ill staking out a brushey construction site and making plans to learn to kayak. Nowdays, a walk down to the neighborhood coffee shop is a fairly large event. However, I'm very fortunate and expect to make a good recovery. I think Prednisone is what's slowing me down physically (and mentally), as opposed to AIH itself. But thank God for Prednisone. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 In a message dated 12/11/00 9:50:35 AM Pacific Standard Time, gefox@... writes: << you asked me about my wife 2 days after I sent you mail telling about her..... oh well... I`m new to cyberspace and get confused just by natural causes. Jerry >> Yes, the timing does seem strange. Your message about your wife was not in my e-mail last night but appeared this morning. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2000 Report Share Posted December 11, 2000 Harper....it was an (weak albeit) attempt at humor in reponse to your querie as to AIH patients being eligible for organ donor. Sometimes I wonder if all my posts are read..... I sent quite a few pointed in your direction and frankly some of the responses seem to jump....it may dpend on how we open our mail..... i.e. ... you asked me about my wife 2 days after I sent you mail telling about her..... oh well... I`m new to cyberspace and get confused just by natural causes. Jerry Quote Link to comment Share on other sites More sharing options...
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