Guest guest Posted September 16, 1999 Report Share Posted September 16, 1999 Hi Gay... My name is Merril . I have a mitochondrial disorder, HepC, a bunch of other stuff including diabetes which is part of the mito disorder, and have had a lot of surgery including bypass surgery in 1985 and 1994. I have a now 35 year old son who had hypogammaglobulinemia when he was young, I don't know nearly enough about HepC, though I refused the interferon treatment in 1994, so I am really reasponding to the issue of a young person and their response to medical care, in particular injections of any kind. Many of the children with mito disorders need tube feedings and/or daily injections. I thoroughly believe that your daughter will be fine with whatever you choose for her. Please remember to communicate with her and help her to understand the reasons for different things; it sounds like you may already be doing that. When my son was two he would march into the lab and stick his little arm out and hold it steady with the other one while they drew blood. Most children are quite capable of this if they know it is in their best interest. Later in life (8-9 yrs old) he had to get allergy shots every week and then we had to wait at the office for at least 20 mins to be sure there was no reaction. In my mind it is pretty much a matter of expectations. This is even true about such things as kids picking up after themselves! Two of my grandchildren have been taught from day one (almost!!!!) if you can dump it out, you can pick it up!!!! Now, given the fact that some kids are on a different wave length (exception to every rule...), I am sure she will do whatever you decide is best for her. Your problem will be to determine WHAT to do. Your approach seems excellent. Knowledge is a big thing.....GOOD LUCK.... Merril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 Hi Luke Welcome to our group! Im glad you found us.. I wish I had some info for you but I just dont know but there are several nurses in our group who will answer you in time IM sure, so hang around and ask a lot of questions.. jaxLuke Schwartz <ace_coolhand@...> wrote: Hello All: I am new to this group, and joined it to get as much information on HVC as I can. My father contracted the virus when he received his heart transplant. According to his doctor the treatment that they use for HVC counteracts with his rejection medication he takes for his heart. Does anyone know of any other treatment that they might use for transplant patients that will not interfere with the rejection drugs? Thank you , Luke FareChase - Search multiple travel sites in one click. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 I know several transplant patients (livers) who had to treat hep c after the transplant and managed to do great afterwards . I am going to copy and forward this message to some of them and see what they suggest . And welcome to the group Treatment? Hello All: I am new to this group, and joined it to get as much information on HVC as I can. My father contracted the virus when he received his heart transplant. According to his doctor the treatment that they use for HVC counteracts with his rejection medication he takes for his heart. Does anyone know of any other treatment that they might use for transplant patients that will not interfere with the rejection drugs? Thank you , Luke FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 19, 2005 Report Share Posted November 19, 2005 I have forwarded your message on to several friends here also is a link to a transplant forum . http://forums.delphiforums.com/livertransplant/messages Treatment? Hello All: I am new to this group, and joined it to get as much information on HVC as I can. My father contracted the virus when he received his heart transplant. According to his doctor the treatment that they use for HVC counteracts with his rejection medication he takes for his heart. Does anyone know of any other treatment that they might use for transplant patients that will not interfere with the rejection drugs? Thank you , Luke FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 Welcome Luke! It is wonderful of you to take the time to research info for your dad. I hope you get the answers you are looking for. This is a great site with many health professionals and knowledgeable people. Kathy PS. I like the " cool-hand " id. --- Luke Schwartz <ace_coolhand@...> wrote: > Hello All: > > I am new to this group, and joined it to get > as much information on HVC as I can. > My father contracted the virus when he received > his heart transplant. According to his doctor the > treatment that they use for HVC counteracts with his > rejection medication he takes for his heart. Does > anyone know of any other treatment that they might > use for transplant patients that will not interfere > with the rejection drugs? > Thank you , > Luke > > > --------------------------------- > FareChase - Search multiple travel sites in > one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 Hi Luke, Sometimes people with liver transplants need to do treatment, and they would be on the rejection medication, too. I'm going to write someone, and maybe you can talk to him. Also, even though he has HCV, it doesn't mean is liver is in bad shape. He may not have to even consider treatment. I'm guessing it was his heart doc who told him about the counteraction. It would be best for him to see a heptologist or a gastro-guy. Just curious...what year did your dad get his heart transplant? Take care, Jane Treatment? Hello All: I am new to this group, and joined it to get as much information on HVC as I can. My father contracted the virus when he received his heart transplant. According to his doctor the treatment that they use for HVC counteracts with his rejection medication he takes for his heart. Does anyone know of any other treatment that they might use for transplant patients that will not interfere with the rejection drugs? Thank you , Luke FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 Dear Luke, Glad you found us, and we will try our hardest to answer your questions as correctly as possible. The fact is Luke your Dad's heart doctor is right. It would not be a good idea to treat the HCV as long as he is on the anti-rejection drugs. But It might be a good idea for your dad to get a referral to a G.I. doctor. That way they can do the test to see at what stage your Dad's liver is at and so forth. HCV can be lived with for a long time, by maintaining a healthy lifestyle. For example: no alcohol none, nadda never. Eating right, getting exercise. Many have found that milk thistle has helped with their liver enezymes. That will be something that Your Dad need to discuss with both his Heart doc and his Hep Doc. In the mean time. Ask Questions and as I said before we will do our best to find you the information that you need. Love JanetLuke Schwartz <ace_coolhand@...> wrote: Hello All: I am new to this group, and joined it to get as much information on HVC as I can. My father contracted the virus when he received his heart transplant. According to his doctor the treatment that they use for HVC counteracts with his rejection medication he takes for his heart. Does anyone know of any other treatment that they might use for transplant patients that will not interfere with the rejection drugs? Thank you , Luke FareChase - Search multiple travel sites in one click. I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 Jane, He received his transplant in 1985. They just now discovered that he has HVC. The doctors concluded that he received the virus during his transplant. Im assuming that since he took well care of himself (ie no alcohol, salt, exc) it did not start showing up until now for them to even check. LukeJane <seyrek@...> wrote: Hi Luke, Sometimes people with liver transplants need to do treatment, and they would be on the rejection medication, too. I'm going to write someone, and maybe you can talk to him. Also, even though he has HCV, it doesn't mean is liver is in bad shape. He may not have to even consider treatment. I'm guessing it was his heart doc who told him about the counteraction. It would be best for him to see a heptologist or a gastro-guy. Just curious...what year did your dad get his heart transplant? Take care, Jane Treatment? Hello All: I am new to this group, and joined it to get as much information on HVC as I can. My father contracted the virus when he received his heart transplant. According to his doctor the treatment that they use for HVC counteracts with his rejection medication he takes for his heart. Does anyone know of any other treatment that they might use for transplant patients that will not interfere with the rejection drugs? Thank you , Luke FareChase - Search multiple travel sites in one click. FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 Janet , I am sorry but that is wrong . I know allot of people that have had transplants and then treated their hepatitis c successfully . Also the rejection meds can cause his liver disease to accelerate and then he would be cirrhotic with iron overload which would damage his heart . His dad should see a hepatologist with the experience of treating tp patients and hepc patients . Re: Treatment? Dear Luke, Glad you found us, and we will try our hardest to answer your questions as correctly as possible. The fact is Luke your Dad's heart doctor is right. It would not be a good idea to treat the HCV as long as he is on the anti-rejection drugs. But It might be a good idea for your dad to get a referral to a G.I. doctor. That way they can do the test to see at what stage your Dad's liver is at and so forth. HCV can be lived with for a long time, by maintaining a healthy lifestyle. For example: no alcohol none, nadda never. Eating right, getting exercise. Many have found that milk thistle has helped with their liver enezymes. That will be something that Your Dad need to discuss with both his Heart doc and his Hep Doc. In the mean time. Ask Questions and as I said before we will do our best to find you the information that you need. Love JanetLuke Schwartz <ace_coolhand@...> wrote: Hello All: I am new to this group, and joined it to get as much information on HVC as I can. My father contracted the virus when he received his heart transplant. According to his doctor the treatment that they use for HVC counteracts with his rejection medication he takes for his heart. Does anyone know of any other treatment that they might use for transplant patients that will not interfere with the rejection drugs? Thank you , Luke FareChase - Search multiple travel sites in one click. I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 I probably need to read up on that huh. I was a cardiac nurse and a psych. nurse for most of my career. I still have things to learn, about Hep C. So Liz you are probably right. Like I said I have lots to learn still. That is why I told him to talk with both his heart doc and a GI or Hep doc. Because I don't have all the answers. Love Janetelizabethnv1 <elizabethnv1@...> wrote: Janet , I am sorry but that is wrong . I know allot of people that have had transplants and then treated their hepatitis c successfully . Also the rejection meds can cause his liver disease to accelerate and then he would be cirrhotic with iron overload which would damage his heart . His dad should see a hepatologist with the experience of treating tp patients and hepc patients . Re: Treatment? Dear Luke, Glad you found us, and we will try our hardest to answer your questions as correctly as possible. The fact is Luke your Dad's heart doctor is right. It would not be a good idea to treat the HCV as long as he is on the anti-rejection drugs. But It might be a good idea for your dad to get a referral to a G.I. doctor. That way they can do the test to see at what stage your Dad's liver is at and so forth. HCV can be lived with for a long time, by maintaining a healthy lifestyle. For example: no alcohol none, nadda never. Eating right, getting exercise. Many have found that milk thistle has helped with their liver enezymes. That will be something that Your Dad need to discuss with both his Heart doc and his Hep Doc. In the mean time. Ask Questions and as I said before we will do our best to find you the information that you need. Love JanetLuke Schwartz <ace_coolhand@...> wrote: Hello All: I am new to this group, and joined it to get as much information on HVC as I can. My father contracted the virus when he received his heart transplant. According to his doctor the treatment that they use for HVC counteracts with his rejection medication he takes for his heart. Does anyone know of any other treatment that they might use for transplant patients that will not interfere with the rejection drugs? Thank you , Luke FareChase - Search multiple travel sites in one click. I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 20, 2005 Report Share Posted November 20, 2005 I had no ideal either until last year when I went to the March on DC . I met so many there that were post tp and retreating . I learned alot from them . He still needs to have a hepatologist who can coordinate the rejection meds and treatment .I also have been looking into treatment after transplant in case I change my mind and have my transplant because I would still have to treat the hep c , LOL Re: Treatment? Dear Luke, Glad you found us, and we will try our hardest to answer your questions as correctly as possible. The fact is Luke your Dad's heart doctor is right. It would not be a good idea to treat the HCV as long as he is on the anti-rejection drugs. But It might be a good idea for your dad to get a referral to a G.I. doctor. That way they can do the test to see at what stage your Dad's liver is at and so forth. HCV can be lived with for a long time, by maintaining a healthy lifestyle. For example: no alcohol none, nadda never. Eating right, getting exercise. Many have found that milk thistle has helped with their liver enezymes. That will be something that Your Dad need to discuss with both his Heart doc and his Hep Doc. In the mean time. Ask Questions and as I said before we will do our best to find you the information that you need. Love JanetLuke Schwartz <ace_coolhand@...> wrote: Hello All: I am new to this group, and joined it to get as much information on HVC as I can. My father contracted the virus when he received his heart transplant. According to his doctor the treatment that they use for HVC counteracts with his rejection medication he takes for his heart. Does anyone know of any other treatment that they might use for transplant patients that will not interfere with the rejection drugs? Thank you , Luke FareChase - Search multiple travel sites in one click. I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon I am a rock, I am island...and a rock feels no pain, and a island never cries...- Simon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Hey Pat, I didn't really feel sick ,but i was very tired all the time.I never had a ultra sound i had a liver biopsy. That tells if the liver has fibrois , if it has scaring. I waited a long time to start the treatments i too was scared. I am not gonna lie to you ,but i feel like crap!! I have lost 43 lbs and i quit my job. But everyone is different. Some people i have met had no side effects at all.How did you find out you had it? How old are you? I am almost fifty and things have been hard ,but i have a great support system. I too was so angry and blamed everyone but me. I have since dealt with the fact i could of gotten it from serveral things. You need to get on anti depressants asap. If you are gonna start the treatments. They will help you alot. I am ribivirn and Peg intron.Interferon. Go on line and check it out . I did alot of research. You might not like what you read ,but if you want to better yourself do the treatments.I have days i want to give up ,but i have kids and a good man. I wish you all the best . Keep in touch, --- <champpantspoopdeck@...> wrote: > do you have to feel ill and be sick before you get > treatment? and what > is the treatment? i was just diagnosed 2 weeks ago > and don't have any > symptoms and my liver is running at 100%. however, i > still have yet to > go for my ultra-sound. what does the ultra-sound > even show??? i have > seen on the net while searching hep c, the natural > med colloidal > silver. anybody ever try this?? any info would be > great as i am still > really new and chicken-shit!! > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 I was on treetment in 2002. One shot a week & 5 pills a day for 48 weeks. Treetment can be rough. But I found it liveable. Terry <champpantspoopdeck@...> wrote: do you have to feel ill and be sick before you get treatment? and what is the treatment? i was just diagnosed 2 weeks ago and don't have any symptoms and my liver is running at 100%. however, i still have yet to go for my ultra-sound. what does the ultra-sound even show??? i have seen on the net while searching hep c, the natural med colloidal silver. anybody ever try this?? any info would be great as i am still really new and chicken-shit!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Most of us had not symptoms before finding out we had hepatitis. If anything a little tired and/or slight indestinal discomfort. By the time the symptoms really start showing up, the disease is in a highly advanced state. Hang in there, I have heard of that colloidal silver, it is controversial, I would check it out closely. I went with the standard treatment and have been undetectable for over 3 years now. -dz- --- <champpantspoopdeck@...> wrote: --------------------------------- do you have to feel ill and be sick before you get treatment? and what is the treatment? i was just diagnosed 2 weeks ago and don't have any symptoms and my liver is running at 100%. however, i still have yet to go for my ultra-sound. what does the ultra-sound even show??? i have seen on the net while searching hep c, the natural med colloidal silver. anybody ever try this?? any info would be great as i am still really new and chicken-shit!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 U R not chicken shit..LOL..We have all gone through what you are now..I was a basket case when I first joined this group..I thought I was going to lose my mind BUT thanks to this great group of people I made it through..Now I am one that did not finish TX cause I was a weakling I guess..NOW LISTEN!! TX does not affect everyone the same way..Some handle it alot better than others and if I am not mistaken there is new treatment out there so it depends on what kind you have.. Just B sure to get on anti depressants first before ever starting TX..Yes you may be sick for a while..Especially the first shot!! It does happen..Once Sharon said that if you feel; like shit then you know you are doing it right!! LOL..That is true!! But if you need to talk during TX feel free..That is what we are here for..Good luck!! <champpantspoopdeck@...> wrote: do you have to feel ill and be sick before you get treatment? and what is the treatment? i was just diagnosed 2 weeks ago and don't have any symptoms and my liver is running at 100%. however, i still have yet to go for my ultra-sound. what does the ultra-sound even show??? i have seen on the net while searching hep c, the natural med colloidal silver. anybody ever try this?? any info would be great as i am still really new and chicken-shit!!Jan Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 That's what I was on too..I took 3 ahots a week and 6 pills a day!! It was hard but I did do it for a while..It makes you tired mostly!! I was very tired all the time..Dave kept his job and so did others as well but they did have to slack off a bit..I have some scarring..I am in the stage that is critical but no cancer as of yet..That's the final stage if it does happen!! Good luck and don't be scared..Face it..It is not as hard as you think.. <royaltyjack@...> wrote: Hey Pat, I didn't really feel sick ,but i was very tired allthe time.I never had a ultra sound i had a liverbiopsy. That tells if the liver has fibrois , if ithas scaring. I waited a long time to start thetreatments i too was scared. I am not gonna lie to you,but i feel like crap!! I have lost 43 lbs and i quitmy job. But everyone is different. Some people i havemet had no side effects at all.How did you find outyou had it? How old are you? I am almost fifty andthings have been hard ,but i have a great supportsystem. I too was so angry and blamed everyone but me.I have since dealt with the fact i could of gotten itfrom serveral things. You need to get on antidepressants asap. If you are gonna start thetreatments. They will help you alot.I am ribivirn and Peg intron.Interferon. Go on lineand check it out . I did alot of research. You mightnot like what you read ,but if you want to betteryourself do the treatments.I have days i want to giveup ,but i have kids and a good man. I wish you all thebest . Keep in touch, --- <champpantspoopdeck@...> wrote:> do you have to feel ill and be sick before you get> treatment? and what > is the treatment? i was just diagnosed 2 weeks ago> and don't have any > symptoms and my liver is running at 100%. however, i> still have yet to > go for my ultra-sound. what does the ultra-sound> even show??? i have > seen on the net while searching hep c, the natural> med colloidal > silver. anybody ever try this?? any info would be> great as i am still > really new and chicken-shit!!> > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 I think I missed a few more days than normal, but I managed to keep working throught the treatment. --- Janet <jfw4359@...> wrote: > That's what I was on too..I took 3 ahots a week and > 6 pills a day!! It was hard but I did do it for a > while..It makes you tired mostly!! I was very tired > all the time..Dave kept his job and so did others as > well but they did have to slack off a bit..I have > some scarring..I am in the stage that is critical > but no cancer as of yet..That's the final stage if > it does happen!! Good luck and don't be scared..Face > it..It is not as hard as you think.. > > <royaltyjack@...> wrote: Hey > Pat, > I didn't really feel sick ,but i was very tired > all > the time.I never had a ultra sound i had a liver > biopsy. That tells if the liver has fibrois , if it > has scaring. I waited a long time to start the > treatments i too was scared. I am not gonna lie to > you > ,but i feel like crap!! I have lost 43 lbs and i > quit > my job. But everyone is different. Some people i > have > met had no side effects at all.How did you find out > you had it? How old are you? I am almost fifty and > things have been hard ,but i have a great support > system. I too was so angry and blamed everyone but > me. > I have since dealt with the fact i could of gotten > it > from serveral things. You need to get on anti > depressants asap. If you are gonna start the > treatments. They will help you alot. > I am ribivirn and Peg intron.Interferon. Go on line > and check it out . I did alot of research. You might > not like what you read ,but if you want to better > yourself do the treatments.I have days i want to > give > up ,but i have kids and a good man. I wish you all > the > best . Keep in touch, > > > --- <champpantspoopdeck@...> wrote: > > > do you have to feel ill and be sick before you get > > treatment? and what > > is the treatment? i was just diagnosed 2 weeks ago > > and don't have any > > symptoms and my liver is running at 100%. however, > i > > still have yet to > > go for my ultra-sound. what does the ultra-sound > > even show??? i have > > seen on the net while searching hep c, the natural > > med colloidal > > silver. anybody ever try this?? any info would be > > great as i am still > > really new and chicken-shit!! > > > > > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 There are a few of us in here that were strong enough to tough treatment out..It can be done..It all depends on the individual..I'm sure yu will do just fine also..Just ask us anything you need to especially when you are upset..We are here...I am on late at night alot so please feel free..Ysyally anytime of nightor day someone is here!!Terry Long <pawpawto3@...> wrote: I was on treetment in 2002. One shot a week & 5 pills a day for 48 weeks. Treetment can be rough. But I found it liveable. Terry <champpantspoopdeck@...> wrote: do you have to feel ill and be sick before you get treatment? and what is the treatment? i was just diagnosed 2 weeks ago and don't have any symptoms and my liver is running at 100%. however, i still have yet to go for my ultra-sound. what does the ultra-sound even show??? i have seen on the net while searching hep c, the natural med colloidal silver. anybody ever try this?? any info would be great as i am still really new and chicken-shit!!Jan Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Hi Cathi, Re: She saw a rheumatologist who diagnosed her with Polymyocitis (I still question the diagnosis, but o.k.) I came across this link and thought it contained info you might find useful. http://www.bio.net/bionet/mm/immuno/1998-March/011885.html Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Hi Cathi, Re: She saw a rheumatologist who diagnosed her with Polymyocitis (I still question the diagnosis, but o.k.) I came across this link and thought it contained info you might find useful. http://www.bio.net/bionet/mm/immuno/1998-March/011885.html Fran Quote Link to comment Share on other sites More sharing options...
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