Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 Butchart wrote: > > As for a transplant - I will tell you that as time goes on our chances > are better. This is pretty much the theory I've been working by. Even if I don't make it until they find a " real " cure, the longer I manage to stay healthy, the better the odds of surviving a liver transplant. Johanthan ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 Butchart wrote: > > Thanks for setting this up - it will be much easier... > > I was diagnosed with PSC in early 93 and until this fall had never had a > liver biopsy. We finally did one and the results were great - no damage > to the liver at all... That means almost 6 years and still no damage to > the liver. I have had a Reux-en-y surgery to bypass a major blockage > and remove the gall bladder in 93, and in 96 had to have a PTC to > dialate the main duct but other than that and some itching and maybe one > or two fever/chills experiences per year everything is pretty normal. > > As for a transplant - I will tell you that as time goes on our chances > are better. In 93 the survival rate was in the low 60% range now it is > nearly 80% and the technology continues to improve. My doctors, my wife > and I have all worked on the idea that the longer I can go on my own > liver the better. I have tried to maintain healthy eating patterns and > do not partake of alchohol, drugs or tabacco anyway. I find I do the > best with a lot of fiber in my diet. > > Well have a great week - > > Rick / PSC/ 43/ Port Ludlow WA > >I agree with Rick about taking care of yourself. Let's hope that the genetic engineers make great strides. Don't forget that there are a lot of young people out there abusing their bodies so badly that they will need transplants and many of their peers will have organ unsuitable for transplant. The hep C prevalence is going to make things harder for all of us. Penny ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1998 Report Share Posted December 20, 1998 Rick -- I wish I could get a liver biopsy for peace of mind if nothing else. I stopped asking my dr. about one because the last couple of times he has said there's no point in it because it would not change the treatment plan and it's not worth the risk. And he's a Mayo Clinic dr. The last liver biopsy I had was during an actual liver surgery I had in '89. My main duct was blocked and the Mayo liver surgeon was very proud of himself after the surgery--he took my gallbladder and used it as a patch over the top of the blocked duct! I was the first at Mayo Clinic for this type of surgery (I didn't know that going in--it was something he had intended to do--it just presented itself). Anyway, the thing that bothers me is how do we know how much damage has been done in all these years? I've had ultrasounds (several) this past year and a couple of CT scans, but surely they don't give a clear picture of the liver damage. And yet, how to be certain the liver biopsy gives a clear picture--the part they biopsy might be in better shape than the rest. Who knows? What do the rest of you think--has anyone else had liver biopsies to determine the condition of the liver and/or progression of PSC? Take care, everyone. C. ------------------------------------------------------------------------ E-group home: http://www.eGroups.com/list/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 Sharon! Welcome aboard! I have only been on this site for about 6 months and I have learned so very much you will not believe! Everyone on here is kind, caring, very concerned, can answer most all of your questions, etc. The get-together will be in Baltimore at the Inner Harbor -- we will meet on Sept 4th at The Cheesecake! I know I cannot wait to meet these guys! How long have you had PSC? What hospital have you been too? We are only nosy because we care and care a lot! Anytime anyone one of us can be of help to you just e-mail this site! It might be better for you to e-mail someone other than I because the other guys probably know more than docs!! WELCOME! Hugs, Biddy Hello >Hello, > >I have just joined this list. I see you are all busy planning a " get >together " . I hope you have fun. > Sharon > > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/475 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 Hi Sharon: Welcome to the list. But your computer seems to be infected with the happy virus. It's doing an automatic send to everyone in your address book -- and that includes invidually to everyone on every listserv. Pam ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 I am very sorry to inform you but I have sent you a virus through e-mail. I urge you to go to the below web site and get the fix for this. After running the fix you will see a list of the people that it send itself on with your e-mail. Please send them the fix so we can kill this thing and not get re-infected. Thank you (this is not a joke) Sharon http://members.xoom.com/Getvirushelp/Happy99Cleaner.ex Re: Hello >Hi Sharon: > >Welcome to the list. But your computer seems to be infected with the happy >virus. It's doing an automatic send to everyone in your address book -- and >that includes invidually to everyone on every listserv. > >Pam > > > > > >------------------------------------------------------------------------ >MyPoints-Free Rewards When You're Online. >Start with up to 150 Points for joining! >http://clickhere./click/475 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 1999 Report Share Posted July 22, 1999 I went to both e-mails below your message and one contained sexual stuff and the other wouldn't load. What do I do now? This is a real pickle to be in. How in the world did you get it? How long have you been on this site? Biddy Re: Hello > > >>Hi Sharon: >> >>Welcome to the list. But your computer seems to be infected with the happy >>virus. It's doing an automatic send to everyone in your address book -- and >>that includes invidually to everyone on every listserv. >> >>Pam >> >> >> >> >> >>------------------------------------------------------------------------ >>MyPoints-Free Rewards When You're Online. >>Start with up to 150 Points for joining! >>http://clickhere./click/475 >> >> >>eGroups.com home: /group/ >> - Simplifying group communications >> >> >> >> > > >------------------------------------------------------------------------ >GET $10 OFF ANY ORDER @ healthshop.com! No min. purchase req. >Save on vitamins & supplements. Use coupon code: EGROUPS99 >at checkout. http://clickhere./click/463 > > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2004 Report Share Posted March 7, 2004 hello > >>I have just signed up for your magazine. As a very >long term diabetic, who >>is just retiring, I am interested in any new aspects >of diabetes. I have >>been diabetic since I was less than 2 years old and >am now 60. Thanks for >>letting me subscribe. Is there any cost? >> >> > >_________________________ >Insulin-FreeTIMES >www.InsulinFreeTimes.com >TEL: >FAX: > > _________________________ Insulin-FreeTIMES www.InsulinFreeTimes.com TEL: FAX: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 Well, Rita If you felt you really needed a sweet snack, one glucose tab would be better than a candy bar. these tblets are so sweet, they make me cringe, so that might cure you of wanting anything sweet! All kidding aside, I thing crunching on a carrot or green pepper or celry might be better. I find most people who want to snack are really looking for a crunchy thing. Hello Hi and Harry and list, This well may be a dumb question, but never the less here we go. hmmmm How to ask it is not easy either. Keeping in mind that I am not diabetic, if I were to get really hungry, and it were not meal time, would it be a good idea to take a gloocose tablet instead of falling into the temptation of say ice cream or a candy bar or just plain over eating? Would it help with control? Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 just eat a huge salad with meat on top of it since salad is plenty of bulk and fills you up. As a non-diabetic, glucose tablets would do you no good and they are far from filling *smile* they only raise blood sugar. Regards, Hello Hi and Harry and list, This well may be a dumb question, but never the less here we go. hmmmm How to ask it is not easy either. Keeping in mind that I am not diabetic, if I were to get really hungry, and it were not meal time, would it be a good idea to take a gloocose tablet instead of falling into the temptation of say ice cream or a candy bar or just plain over eating? Would it help with control? Rita ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 also try sugar free jello. main thing is eating low calorie/low carb foods that fill up your belly like jello, pop, or salad etc. Regards, Hello > Hi and Harry and list, > This well may be a dumb question, but never the less here we go. > hmmmm How to ask it is not easy either. Keeping in mind that I am not > diabetic, > if I were to get really hungry, and it were not meal time, would it be a > good idea to take a gloocose > tablet instead of falling into the temptation of say ice cream or a candy > bar or just plain over eating? Would it help with control? > Rita > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Yes I am learning that. I munched on cucumber slices about ten of them yesterday and it did help. I guess a bit of distraction helps. BTW no dressing of course. Smile. Good baseball game on the side. Rita > also try sugar free jello. main thing is eating low calorie/low carb foods that fill up your belly like jello, pop, or salad etc. > > > Regards, > > Hello > > > > Hi and Harry and list, > > This well may be a dumb question, but never the less here we go. > > hmmmm How to ask it is not easy either. Keeping in mind that I am not > > diabetic, > > if I were to get really hungry, and it were not meal time, would it be a > > good idea to take a gloocose > > tablet instead of falling into the temptation of say ice cream or a candy > > bar or just plain over eating? Would it help with control? > > Rita > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Hmm sure is food for thought. Thanks . Any more news re diabetics and hearing loss? I am wondering too if over weight can cause a bit of a hearing loss. I can think personally of no single field of medicine where there is less progress in the treatment or " cure " of hearing loss than any other. Don't they believe in research? What about adult stem nerve implant for auditory nerve? Rita who thinks ottolaryngologist don not earn their pay. Grrrr (Let's you spell it. smile. ) > hey a little salad dressing wouldn't hurt. there is only 6 grams of carbs in 2 tablespoons of italian dressing. > > > Regards, > > Hello > > > > > > > Hi and Harry and list, > > > This well may be a dumb question, but never the less here we go. > > > hmmmm How to ask it is not easy either. Keeping in mind that I am not > > > diabetic, > > > if I were to get really hungry, and it were not meal time, would it be a > > > good idea to take a gloocose > > > tablet instead of falling into the temptation of say ice cream or a candy > > > bar or just plain over eating? Would it help with control? > > > Rita > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Hi , welcome back! Hello > Hi Everyone!! This is for those of you who don't know me. I was on this list and for some reason I was having trouble with it. but now things are ok now. well, guys I'm back, I'm doing so, so on the 20th of april I have an appointment with the diabetic nurse. I've been a bad girl lately. I have alot of things going on right now.and trying to deal with it. so I hope to hear from you soon. > Best regards, > Bonnecarre > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 Welcome aboard! You and can teach us a lot, and I look forward to your posts. Since dialysis looms as a big possibility for any diabetic, it would be good for us to learn more about this procedure from a real personal standpoint. What is the night cycler? For some reason I dont't feel it is a form of exercise equipment like an elyptical cycle. Welcome aboard , Harry Hello > Hi! I have heard a lot of great things about this list from several of my friends. I can already see that it is a good list, and that I will learn a lot. My name is . My husband, , has been a type 2 diabetic since 1987. For the last 3 and 1/2 years, he has been on various forms of dialysis, and is now using the night cycler, and has found that this method is the best for him. I'm looking forward to getting to know all of you, and learning a lot, too! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 Hi and welcome! Nice to have you on list and joining us. If you have any specific questions while you read posts, please feel free to post. Regards, Hello Hi! I have heard a lot of great things about this list from several of my friends. I can already see that it is a good list, and that I will learn a lot. My name is . My husband, , has been a type 2 diabetic since 1987. For the last 3 and 1/2 years, he has been on various forms of dialysis, and is now using the night cycler, and has found that this method is the best for him. I'm looking forward to getting to know all of you, and learning a lot, too! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 Hi , Well, sure looks like the Okies are out in force. I saw your earlier post but thought yo had been on this list for some time. , Harry and all, is another escapee from the Oklahoma School for the Blind. I think she was in the first or so grade when I graduated. Cy, the Ancient One... Hello Hi! I have heard a lot of great things about this list from several of my friends. I can already see that it is a good list, and that I will learn a lot. My name is . My husband, , has been a type 2 diabetic since 1987. For the last 3 and 1/2 years, he has been on various forms of dialysis, and is now using the night cycler, and has found that this method is the best for him. I'm looking forward to getting to know all of you, and learning a lot, too! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 The cycler is a method of in-home peritoneal dialysis. is hooked up to this machine for 9 and a half hours every night. There is a 22-foot hose, so if he doesn't want to lie down, he can get up and walk around, not to exceed 22 feet. This method is most convenient because he is sleeping for most of this time, and he isn't tied down during the day. He is only the second totally blind person that I know of to use this machine without assistance. We have been told that most blind people who use the cycler have a person in the home with them who has some sight. The nurses at 's dialysis clinic were very reluctant to train him on this machine until we finally were able to locate another totally blind person in another state who was using the cycler without sighted assistance. cv Hello > > > > Hi! I have heard a lot of great things about this list from several of my > friends. I can already see that it is a good list, and that I will learn a > lot. My name is . My husband, , has been a type 2 diabetic > since 1987. For the last 3 and 1/2 years, he has been on various forms of > dialysis, and is now using the night cycler, and has found that this method > is the best for him. I'm looking forward to getting to know all of you, and > learning a lot, too! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 very interesting. Thanks for the explanation. I love to see determination smile. Regards, Hello > > > > Hi! I have heard a lot of great things about this list from several of my > friends. I can already see that it is a good list, and that I will learn a > lot. My name is . My husband, , has been a type 2 diabetic > since 1987. For the last 3 and 1/2 years, he has been on various forms of > dialysis, and is now using the night cycler, and has found that this method > is the best for him. I'm looking forward to getting to know all of you, and > learning a lot, too! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 Now you have really gone and done it! You have pricked my interests to a higher level. Tell me more. For instance do you help him get hooked up? Are you sighted? What is his diet and drink like? Does he enjoy things like conversation, computer, email, TV, radio and reading books, and etc.? Does he require special medications? Really, I would appreciate your help with this, since this is something I am trying to avoid, even though I know if I have to go on dialysis, it is not the end of living. Hello > > > > > > > Hi! I have heard a lot of great things about this list from several of > my > > friends. I can already see that it is a good list, and that I will learn > a > > lot. My name is . My husband, , has been a type 2 diabetic > > since 1987. For the last 3 and 1/2 years, he has been on various forms of > > dialysis, and is now using the night cycler, and has found that this > method > > is the best for him. I'm looking forward to getting to know all of you, > and > > learning a lot, too! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 Harry, I can tell you that, if you get ten words out of on any given day you have done very well. is one of the Cherokee Braves and is very conservative with his words. (I, on the other hand, am completely frivolous with my words and love to talk) My Grandfather was Full Blood Creek and probably never said more than five words in any given day. is the chatter box of the family. They are both very good folks and do have a considerable amount of knowledge to share. The Ancient One... Re: Hello Now you have really gone and done it! You have pricked my interests to a higher level. Tell me more. For instance do you help him get hooked up? Are you sighted? What is his diet and drink like? Does he enjoy things like conversation, computer, email, TV, radio and reading books, and etc.? Does he require special medications? Really, I would appreciate your help with this, since this is something I am trying to avoid, even though I know if I have to go on dialysis, it is not the end of living. Hello > > > > > > > Hi! I have heard a lot of great things about this list from > > > several of > my > > friends. I can already see that it is a good list, and that I will learn > a > > lot. My name is . My husband, , has been a type 2 > > diabetic since 1987. For the last 3 and 1/2 years, he has been on > > various forms of > > dialysis, and is now using the night cycler, and has found that this > method > > is the best for him. I'm looking forward to getting to know all of > > you, > and > > learning a lot, too! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 I don't help him with it, though I sat in on most of his training. I'm also totally blind. They do a lab check on him every month and carefully watch things such as his protein level, potassium, blood sugar, hematocrit and phosphorus. He has to eat 3 Tumms before each meal or snack. Also on this peritoneal dialysis, he has to eat quite a bit of meat and eggs to keep his protein level up. If he isn't feeling well and doesn't have much of an appetite, this can sometimes be a problem. He started taking a computer class, but this class was discontinued, so he hasn't been on the computer much. We are about to purchase some learning material, so hopefully he'll be on the computer before long. I know he'd really enjoy this and other lists. cv Hello > > > > > > > > > > Hi! I have heard a lot of great things about this list from several of > > my > > > friends. I can already see that it is a good list, and that I will > learn > > a > > > lot. My name is . My husband, , has been a type 2 diabetic > > > since 1987. For the last 3 and 1/2 years, he has been on various forms > of > > > dialysis, and is now using the night cycler, and has found that this > > method > > > is the best for him. I'm looking forward to getting to know all of you, > > and > > > learning a lot, too! > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 I forgot to mention he enjoys radio, conversation, reading, cooking, old-time radio shows and music. He is also full-blood Cherokee, and is very much into old Indian traditions from a historical standpoint. One thing he likes about the peritoneal dialysis method as opposed to hemodialysis is that this method allows him to drink more fluids and he can now have potassium-containing foods, which he wasn't supposed to have while on hemodialysis. Hope I didn't forget anything! cv Hello > > > > > > > > > > Hi! I have heard a lot of great things about this list from several of > > my > > > friends. I can already see that it is a good list, and that I will > learn > > a > > > lot. My name is . My husband, , has been a type 2 diabetic > > > since 1987. For the last 3 and 1/2 years, he has been on various forms > of > > > dialysis, and is now using the night cycler, and has found that this > > method > > > is the best for him. I'm looking forward to getting to know all of you, > > and > > > learning a lot, too! > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 I am sure he will enjoy the computer once he masters it or at least gets the hang of it. I see the computer as my car, and it is the only way I get around independently very much. In a matter of a few seconds I can be somewhere on the other side of the world or reading a good book or listening to great music all via the computer. How much fluid can he drink each day and what kind? A friend of mine was only to munch on a glass of crushed ice each day, which sounds unreasonable to me, but that is what she said. What are the three Tums for? Does he have acid reflux or is it needed for calcium or what? Hello > > > > > > > > > > > > > Hi! I have heard a lot of great things about this list from several > of > > > my > > > > friends. I can already see that it is a good list, and that I will > > learn > > > a > > > > lot. My name is . My husband, , has been a type 2 > diabetic > > > > since 1987. For the last 3 and 1/2 years, he has been on various > forms > > of > > > > dialysis, and is now using the night cycler, and has found that this > > > method > > > > is the best for him. I'm looking forward to getting to know all of > you, > > > and > > > > learning a lot, too! > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 When he was on hemodialysis he was supposed to have no more than 32 ounces of fluid a day. He tried to adhere to this, but it was rather difficult. Now his fluid level is not restricted, but he is still supposed to watch his salt intake, and he weighs every morning. He also keeps a check on his feet to make sure they don't swell, and can usually tell if he has consumed too much liquid by how much he weighs in the morning and how he feels. He occasionally drinks orange juice, but mostly water, coffee, some diet drinks, and occasionally some tea. cv Hello > > > > > > > > > > > > > > > > Hi! I have heard a lot of great things about this list from > several > > of > > > > my > > > > > friends. I can already see that it is a good list, and that I will > > > learn > > > > a > > > > > lot. My name is . My husband, , has been a type 2 > > diabetic > > > > > since 1987. For the last 3 and 1/2 years, he has been on various > > forms > > > of > > > > > dialysis, and is now using the night cycler, and has found that this > > > > method > > > > > is the best for him. I'm looking forward to getting to know all of > > you, > > > > and > > > > > learning a lot, too! > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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