Guest guest Posted July 10, 1999 Report Share Posted July 10, 1999 Lori, My name is Jodi Rhoades. I just subscribed to LiverSupport yesterday and had 131 new messages when I checked today. What struck me with some of your messages is your faith. My husband and I just found out about a week ago that our 9 1/2 year old son has Primary Sclerosing Cholangitis. He had an ERCP three years ago and it was still undiagnosable. He had another last week that confirmed our worst fears. He will most likely need a transplant within the next five years. We have not yet explained 'the future' with him, just that it has gotten worse and he has to have a colonoscopy next week. We plan to talk to him this evening. All of the messages I read today are from adults with some liver disease, none are from parents with children with liver disease. Anyway, our strength is in our Creator and we too are relying on Him to get us through this. If there's anyone out there who is a parent of someone with PSC, I would like to correspond with you. Thanks Jodi R. >From: " Lori Cummins " <tlknj@...> >Reply- onelist >< onelist> >Subject: Re: [ ] biopsy with AIH and my faith in God >Date: Fri, 9 Jul 1999 21:47:15 -0500 > >From: " Lori Cummins " <tlknj@...> > >Susie, the long post was just fine! Hope you are not feeling so down. >Weird, >I have a 14 year old daughter, and I also have a 11 yr. old son and an 8 >year old daughter. They have been pretty good through the whole thing. My >youngest was in kindergarten when I had my transplant. She had a little >problem understanding the whole thing. She will be in 3rd grade now, so she >is handling it all better now. It is really surprising how much kids really >take in and understand when you think they don't. My kids are so precious >to >me, that really gave me a reason to fight for my life. >God Bless Lori C. liver tx (MN) > Re: [ ] biopsy with AIH and my faith in God > > > >From: SUSIE22658@... > > > >Thanks Lori > >I know too that God has kept me going. Only a few people on this list >know > >my whole story-so complicated, confusing and sometimes I just feel too > >vulnerable talking about it all. But I have a wonderful Pastor that I > >communicate with regularly up in Michigan-I live in Indiana-but used to >live > >near Grand Rapids. He changed my whole outlook on life. I'm a single >mom > >with 2 teenagers and I've managed to keep them in a Lutheran school and >they > >are great kids, I've managed after the divorce to refinance the house and > >actually improve it. People can't believe how little I actually live on! > >But my kids with Pastor Larsens help have learned that you don't need >money > >or material things to be happy. My son who is 14 is such a card-last >year > >our 19 " Tv got hit by lightening and was in for repair and we had 2 old >TV's > >one with a picture and one with sound. Occasionally you had to hit the >one > >to keep the picture and we used them while the one was being repaired. >My > >son Ian said see we have a large screen TV-we just tape them together!!! >Then > >of course he rolled on the floor laughing. But he is a great kid to be >14 > >and put up with me and not having all the material things. We don't do > >without and God has always provided for us when things got rough. I >don't > >worry anymore-that is my Gift from God and my Gift to him that I trust in >his > >care. > >Sorry for the long post-but sometimes it is good to share our faith >during > >hard times. > >Susie > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Jodi: There is a internet support group for PSC. I think you can join through the following address: www./group/ The members of the group would be more than happy to answer your questions. There are members in similar situations with children that have been diagnosed with PSC. I received a new liver in January, 1995 due to PSC. I sure am doing a whole lot better after transplant then before. I hope this helps. Tom Dayton, Ohio 1995 ltx Re: [ ] biopsy with AIH and my faith in God >> >> >> >From: SUSIE22658@... >> > >> >Thanks Lori >> >I know too that God has kept me going. Only a few people on this list >>know >> >my whole story-so complicated, confusing and sometimes I just feel too >> >vulnerable talking about it all. But I have a wonderful Pastor that I >> >communicate with regularly up in Michigan-I live in Indiana-but used to >>live >> >near Grand Rapids. He changed my whole outlook on life. I'm a single >>mom >> >with 2 teenagers and I've managed to keep them in a Lutheran school and >>they >> >are great kids, I've managed after the divorce to refinance the house and >> >actually improve it. People can't believe how little I actually live on! >> >But my kids with Pastor Larsens help have learned that you don't need >>money >> >or material things to be happy. My son who is 14 is such a card-last >>year >> >our 19 " Tv got hit by lightening and was in for repair and we had 2 old >>TV's >> >one with a picture and one with sound. Occasionally you had to hit the >>one >> >to keep the picture and we used them while the one was being repaired. >>My >> >son Ian said see we have a large screen TV-we just tape them together!!! >>Then >> >of course he rolled on the floor laughing. But he is a great kid to be >>14 >> >and put up with me and not having all the material things. We don't do >> >without and God has always provided for us when things got rough. I >>don't >> >worry anymore-that is my Gift from God and my Gift to him that I trust in >>his >> >care. >> >Sorry for the long post-but sometimes it is good to share our faith >>during >> >hard times. >> >Susie >> > >> >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 1999 Report Share Posted July 18, 1999 Jodi... I am a mother of a 16 yr old with PSC, AIH, Crohns and Rhuematiod Arthritis....This all started when he was barely 10....Needless to say he has been thru the ringer...Hes had the biopsys and the ERCP and many other tests that most adults have never even heard of...The most important thing is to keep a positive attitude( I know its tough) and keep humor in your life...Smiles go a long way....I would be glad to write to you any time...As you can see this is a very busy board and it is hard to keep up...You can always personally e-mail me if you would like... Looking forward to talking to you..... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 1999 Report Share Posted July 18, 1999 Hi Luanne, I was just wondering about Crohn's. I have a friend with this disease. Are you born with Crohn's, or is it contracted at a certain age? I thought she got it when she was 8, but I didn't think it was autoimmune in nature, so I'm a little confused. She seems to have a tough case of it, and is usually in the hospital for a couple of weeks every year. I think she's had all the surgery she can have. She's on some of the same medications that I'm on. Thanks for your insight.. >From: BBNLU@... >Reply- onelist > onelist >Subject: Re: [ ] my son has PSC >Date: Sun, 18 Jul 1999 00:28:24 EDT > >From: BBNLU@... > >Jodi... >I am a mother of a 16 yr old with PSC, AIH, Crohns and Rhuematiod >Arthritis....This all started when he was barely 10....Needless to say he >has >been thru the ringer...Hes had the biopsys and the ERCP and many other >tests >that most adults have never even heard of...The most important thing is to >keep a positive attitude( I know its tough) and keep humor in your >life...Smiles go a long way....I would be glad to write to you any >time...As >you can see this is a very busy board and it is hard to keep up...You can >always personally e-mail me if you would like... >Looking forward to talking to you..... >Luanne Ty's mom > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 1999 Report Share Posted July 20, 1999 Jodi Rhoades wrote: > From: " Jodi Rhoades " <jjrhoades@...> > > Lori, > My name is Jodi Rhoades. I just subscribed to LiverSupport yesterday and had > 131 new messages when I checked today. What struck me with some of your > messages is your faith. > My husband and I just found out about a week ago that our 9 1/2 year old son > has Primary Sclerosing Cholangitis. He had an ERCP three years ago and it > was still undiagnosable. He had another last week that confirmed our worst > fears. He will most likely need a transplant within the next five years. > We have not yet explained 'the future' with him, just that it has gotten > worse and he has to have a colonoscopy next week. We plan to talk to him > this evening. > All of the messages I read today are from adults with some liver disease, > none are from parents with children with liver disease. > Anyway, our strength is in our Creator and we too are relying on Him to > get us through this. > If there's anyone out there who is a parent of someone with PSC, I would > like to correspond with you. > Thanks > Jodi R. > > >From: " Lori Cummins " <tlknj@...> > >Reply- onelist > >< onelist> > >Subject: Re: [ ] biopsy with AIH and my faith in God > >Date: Fri, 9 Jul 1999 21:47:15 -0500 > > > >From: " Lori Cummins " <tlknj@...> > > > >Susie, the long post was just fine! Hope you are not feeling so down. > >Weird, > >I have a 14 year old daughter, and I also have a 11 yr. old son and an 8 > >year old daughter. They have been pretty good through the whole thing. My > >youngest was in kindergarten when I had my transplant. She had a little > >problem understanding the whole thing. She will be in 3rd grade now, so she > >is handling it all better now. It is really surprising how much kids really > >take in and understand when you think they don't. My kids are so precious > >to > >me, that really gave me a reason to fight for my life. > >God Bless Lori C. liver tx (MN) > > Re: [ ] biopsy with AIH and my faith in God > > > > > > >From: SUSIE22658@... > > > > > >Thanks Lori > > >I know too that God has kept me going. Only a few people on this list > >know > > >my whole story-so complicated, confusing and sometimes I just feel too > > >vulnerable talking about it all. But I have a wonderful Pastor that I > > >communicate with regularly up in Michigan-I live in Indiana-but used to > >live > > >near Grand Rapids. He changed my whole outlook on life. I'm a single > >mom > > >with 2 teenagers and I've managed to keep them in a Lutheran school and > >they > > >are great kids, I've managed after the divorce to refinance the house and > > >actually improve it. People can't believe how little I actually live on! > > >But my kids with Pastor Larsens help have learned that you don't need > >money > > >or material things to be happy. My son who is 14 is such a card-last > >year > > >our 19 " Tv got hit by lightening and was in for repair and we had 2 old > >TV's > > >one with a picture and one with sound. Occasionally you had to hit the > >one > > >to keep the picture and we used them while the one was being repaired. > >My > > >son Ian said see we have a large screen TV-we just tape them together!!! > >Then > > >of course he rolled on the floor laughing. But he is a great kid to be > >14 > > >and put up with me and not having all the material things. We don't do > > >without and God has always provided for us when things got rough. I > >don't > > >worry anymore-that is my Gift from God and my Gift to him that I trust in > >his > > >care. > > >Sorry for the long post-but sometimes it is good to share our faith > >during > > >hard times. > > >Susie > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 Crohns like many of the auto-immune diseases are a mistery to all...No cure,not really sure where it comes from...It is called famialia(something like that) meaning that somewhere in the family there has been Imflammatory Bowel Disease...Not every generation but skipping around....I have another son who is 21 and has had Ulcerative Coletis since he was 3 yrs old...another IBD...Many of the same meds are used for all these auto-immune diseases. The docs seem to use different combinations until they come up with the right one for that person... My older son seems to have a real cycle with his UC...When he was little he was very ill...in the hosp. lost a lot of weight...7 1/2 yrs old and weighed 32 lbs...He was 10.2 lbs at birth...When he was 8 he finally started doing well...then it seems to be every 3 years he gets real sick...violently ill ending up in the ER and then being admitted for about 3 weeks...Takes pred for about 8 months and then is good for about another 2 1/2 yrs. He is 21 and 5 " 11' doing really well... Tyler is another story...got sick at 10 yrs old...Never sick ..not even colds...and then started running fevers...105 and higher...Ped treated hm for 2 weeks..getting weaker and sicker...lost 20 lbs in those 2 weeks..took him to ' docs in Philly and they admitted him in seconds...didn't even need to do labs to see that this kid was really sick...Took 2 weeks to diagnose him....When he was admitted he could not walk ..keep any food down...not any typical IBD symtoms....After all the specialist check him and test came back....Crohns.... Its been a tough battle for him...with all the other complications......from what his docs tell us he is a one of a kind....They've looked back as far as 1966 and can't find anything like him...in the US...They are now just waiting to see what his system decides to attack next....That is one reason he gets so many labs done.... Well I hope I have been some help....If you have any specific questions I will try to help... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 1999 Report Share Posted July 21, 1999 I too would love this information....How can I get it... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 1999 Report Share Posted July 24, 1999 Dear Luanne, Thanks for educating me on this. I can't believe your son(s) have been through so much with their health. This must be very tough on you. From everything you've written about Ty in previous posts, he seems like a real trooper, despite all the challenges he's faced. I'm sure you're a major reason he is able to cope as well as he does. Thanks again... >From: BBNLU@... >Reply- onelist > onelist >Subject: Re: [ ] my son has PSC >Date: Tue, 20 Jul 1999 23:27:27 EDT > >From: BBNLU@... > > >Crohns like many of the auto-immune diseases are a mistery to all...No >cure,not really sure where it comes from...It is called famialia(something >like that) meaning that somewhere in the family there has been Imflammatory >Bowel Disease...Not every generation but skipping around....I have another >son who is 21 and has had Ulcerative Coletis since he was 3 yrs >old...another >IBD...Many of the same meds are used for all these auto-immune diseases. >The docs seem to use different combinations until they come up with the >right >one for that person... My older son seems to have a real cycle with >his UC...When he was little he was very ill...in the hosp. lost a lot of >weight...7 1/2 yrs old and weighed 32 lbs...He was 10.2 lbs at birth...When >he was 8 he finally started doing well...then it seems to be every 3 years >he >gets real sick...violently ill ending up in the ER and then being admitted >for about 3 weeks...Takes pred for about 8 months and then is good for >about >another 2 1/2 yrs. He is 21 and 5 " 11' doing really well... >Tyler is another story...got sick at 10 yrs old...Never sick ..not even >colds...and then started running fevers...105 and higher...Ped treated hm >for >2 weeks..getting weaker and sicker...lost 20 lbs in those 2 weeks..took him >to ' docs in Philly and they admitted him in seconds...didn't even >need >to do labs to see that this kid was really sick...Took 2 weeks to diagnose >him....When he was admitted he could not walk ..keep any food down...not >any >typical IBD symtoms....After all the specialist check him and test came >back....Crohns.... >Its been a tough battle for him...with all the other >complications......from >what his docs tell us he is a one of a kind....They've looked back as far >as >1966 and can't find anything like him...in the US...They are now just >waiting >to see what his system decides to attack next....That is one reason he gets >so many labs done.... >Well I hope I have been some help....If you have any specific questions I >will try to help... >Luanne Ty's mom > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.