Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Betsy, Congratulations to and ! Awesome news! Hugs, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Thanks Betsy. Me too! Re: What does this mean? I'm sure you'll be amazed. I hope it's soon! Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Hi Betsy, Congratulations on 's engagement! I am so happy life is going so well for him. Re: What does this mean? Thanks, Pierre. I'm glad to be of some help here. And is now really into adulthood: as of yesterday, he is the proud co-owner of a 30 year mortgage (and the house that goes with it) and has a fiance. He proposed to , his girlfriend of 6 years who has gone through some very tough times with him and has been wonderfully loyal and dear. It's another terrific milestone in his post-transplant life. Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Thanks . I'm going to look into the Melatonin. Is it a drug? It sounds natural to me. I think I remember Amy taking it when she was having trouble sleeping. I'm way behind on the posts again. I've been gearing up for school, and helping Elisabet cope with her wean. We haven't started her new headache medication because she's had such a rough time since we stepped down her pred. dose. It just didn't seem right to add one more med. into the mix. If it was awful being on pred, it sure has been twice as bad going off it. At least we know it's not going to last forever. I keep comforting with her with that fact that she is going to feel better eventually. B, Elisabet's mom > > > Hi B, > > I am very glad Elisabet will be weaned off the Prednisone. I'll bet she > will feel much better once she is off it. > > When I was on the plane yesterday, I read an article in a magazine about > Melatonin helping with headaches. Now, I am not a doctor, but it might be > worth asking. Apparently there is some research that Melatonin at night helps to > significantly reduce both the frequency and duration of even migraines. > > I hope that the new mediation help her headaches. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Cy, Thanks for the encouragment about the NephKids site. I'll keep that in mind. I saw a post on NephKids tonight about Kidcomm. I'm going to check that out as well. Is that the site you talked about that has used, but it doesn't get much traffic? Maybe it will pick up a bit now. So far the wean hasn't been as easy as we had hoped. Since the pred. didn't help her, I had hoped the wean wouldn't be too bad. Well, the day after she stepped down the dose, she stayed in bed almost the entire day. Her head hurt about as bad as it ever has (we gave her a double dose of Imitrex - with her neuro's ok - and it didn't help at all), plus she was so incredibly tired. It's been better since then, she's up and around, but still doesn't feel like doing much of anything. Oh well, I keep telling her to hang in there, it is going to get better. B, Elisabet's mom > Hi , > > Glad to hear that Elizabet is getting a break from the steroids. Hopefully, > it will help with some of the other issues as well. > > I would not be hesitant to ask questions on NephKids. There are a handful > of other IgAN kids there - but like you they're not that vocal. It can be > very useful have another opinion from their moderators - especially when > treatments don't seem to be working.. Manu did his share of electronic > handholding with me back when was on cyclo and during the pred IVs. > I so dread the day he steps down from being moderator. We had the privilege > of meeting him when he was in town for a wedding last year. Dr. Sue has > also been very helpful, off line, to friends of mine who wanted a second > opinion. They are both great resources with hearts of gold. > > Best wishes for an easy taper! > > Cy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Hi Rita, Do you remember how long it took before the depression lifted? I'm assuming it was after your taper was completed, but I am just curious. I know it can take a long time for the weight to come off. I hope her mood lifts sooner than that. It's funny you mentioned that everyone's different. How true. My husband (who is an extremely even-keeled, upbeat, optimistic guy - who hardly ever worries about anything) has been really down since she went off pred., because he looks to the future and was really hoping it would work. I, on the other hand, was down when she was on it and am thrilled to get her off it, because I am living in the now, and just want her to feel better. It's strange how each of us copes in our different ways. Fortunately, we understand and support each other, and it's a good thing we both aren't down at the same time. I'm still cheering you on - on both fronts!! B, Elisabet's mom > As I've said before, the prednisone didn't work for me either. I too was > weaned off of it quickly and honestly felt no side effects from the taper - > just incredible relief to be off of it. I also feel that it contributed to my > depression....I think everyone is different, but for me it was very difficult > to face myself in the mirror...I had gained so much weight from it and was so > uncomfortable about that. I hope and pray that Elisabet's depression will > lift soon. Please keep us posted on how she's doing. Hugs, Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 I agree with you Pierre. In that regard, Betsy, your and 's story is invaluable and encouraging too. I'm so glad he is doing so well now. My prayer is that all of you who are already waiting or are so close to transplant will have that " miraculous transformation " soon. Thanks Betsy for sharing your story, B., Elisabet's mom > I find that Betsy's experience with this is invaluable. We have plenty of > parents of children with IgAN, but we don't have many who have had time to > go the whole route from childhood IgAN to adulthood, at least not yet. > Pierre > > Re: What does this mean? > > > > My son was diagnosed at 13, after having a few episodes of very dark > > urine. He initially was on Prednisone, ACE inhibitor, and fish oil > > but was tapered off the pred after about a year because it didn't > > seem to make any difference. We were all so pleased with the > > discontinuation of the pred. He remained fairly stable until he > > turned 18 and then suddenly developed the anemia of CRF when his > > creatinine was only at 2.0. But then he declined fairly rapidly over > > the next year and a half, and when he was 19 they began talking about > > dialysis or transplant. He lasted until he was 21 and had the > > transplant (you're right - my kidney) over the summer between his jr. > > and sr. year in college. I think he was sorry afterwards that he > > didn't go ahead with the transplant sooner, but the decline was > > gradual enough that he lost track of how bad he felt. After the > > surgery, the transformation was miraculous. > > > > Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 What terrific news. Congratulations Betsy, and to the happy couple too. B, Elisabet's mom > Thanks, Pierre. I'm glad to be of some help here. And is now > really into adulthood: as of yesterday, he is the proud co-owner of > a 30 year mortgage (and the house that goes with it) and has a > fiance. He proposed to , his girlfriend of 6 years who has gone > through some very tough times with him and has been wonderfully loyal > and dear. It's another terrific milestone in his post-transplant life. > > Betsy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Thanks Sophia. The wean has been rough so far, but we're hoping on the other end, things are going to improve. B, Elisabet's mom > Hi B., > > I'm glad to hear that the dr has decided to wean her off pred. It's pretty > harsh drug to take, and if it isn't working, it's better to be weaned off of > it. I hope this will improve Elisabet and reduce all those headaches > and other problems she has encountered. > > Sophia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 , I just wanted to tell you that your mom sounds like one awesome lady. Two kids in surgery at the same time would be pretty rough. I hope I can be that same kind of rock for my daughter. Having the support of the people on this board sure helps. I've got some very supportive friends in my church as well. It helps keep my attitude positive around her, when I can complain to someone else! B, Elisabet's mom > : > > I read your post and pictured my mom writing it. .... > > When I see my mom, I will ask her how she dealt with it. I mean, during my tx she had 2 of her 3 children in surgery. Personally, I would have been bouncing off the walls. She seemed like she was a rock, but I know inside she was a mess of emotions. I do know that she had some close friends whom she confided in, and who were there for her. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2005 Report Share Posted August 26, 2005 Hi , I'm sorry to hear that the first steps on the wean were so painful for you guys. It must take all that you have to continue being so encouraging. My hat it off to you. It's so easy to get consumed by your own worries. Hopefully this will get easier. I wasn't referring to Kidcomm. I used to subscribe to them a long time ago, but it never really caught my interest. If I remember what the kidney one that used was I'll let you know. Cy Re: What does this mean? > Cy, > > Thanks for the encouragment about the NephKids site. I'll keep that > in mind. I saw a post on NephKids tonight about Kidcomm. I'm going to > check that out as well. Is that the site you talked about that > has used, but it doesn't get much traffic? Maybe it will pick up a > bit now. > > So far the wean hasn't been as easy as we had hoped. Since the pred. > didn't help her, I had hoped the wean wouldn't be too bad. Well, the > day after she stepped down the dose, she stayed in bed almost the > entire day. Her head hurt about as bad as it ever has (we gave her a > double dose of Imitrex - with her neuro's ok - and it didn't help at > all), plus she was so incredibly tired. It's been better since then, > she's up and around, but still doesn't feel like doing much of > anything. Oh well, I keep telling her to hang in there, it is going > to get better. > > B, Elisabet's mom > > > >> Hi , >> >> Glad to hear that Elizabet is getting a break from the steroids. > Hopefully, >> it will help with some of the other issues as well. >> >> I would not be hesitant to ask questions on NephKids. There are a > handful >> of other IgAN kids there - but like you they're not that vocal. It > can be >> very useful have another opinion from their moderators - especially > when >> treatments don't seem to be working.. Manu did his share of > electronic >> handholding with me back when was on cyclo and during the > pred IVs. >> I so dread the day he steps down from being moderator. We had the > privilege >> of meeting him when he was in town for a wedding last year. Dr. Sue > has >> also been very helpful, off line, to friends of mine who wanted a > second >> opinion. They are both great resources with hearts of gold. >> >> Best wishes for an easy taper! >> >> Cy > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported > by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
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