Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Jing. This is excellent!! I'm printing it out and putting in on my computer... so I can read it when I'm in the sefl-pity mode!!! Ali In a message dated 11/9/04 6:18:52 PM Eastern Standard Time, jfdanielson0413@... writes: > Everyone has a chronic porblem in one form or the other. Ours is health, > some in finances, some relational, some mental, some in their jobs. I just want > to encourage you not to let it get you down too much. Let us know what the > biopsy showed. > > Take care, > Jing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 In a message dated 11/9/04 8:34:58 PM Eastern Standard Time, bd4679@... writes: > priya Go to Hawaii!!!!!! We've all been diagnosed at different times, some early, some late, and some < like me> misdiagnosed for years So treatment and administering of drugs will vary. It's been said many times here this week.... Keep BP in check. And go to Hawaii Ali Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hello again.... I was one of the very lucky ones, mine was at about 59% should be at 99% based on my age etc. but I have what they call negative prognostic factors, moderate proteinuria at 3 grams, hypertension, global and focal sclerosis by biopsy. I would ask for the complete report of your biopsy so that you can get a good picture of what's going on, as well as copies of all of your labs each time they are drawn. Best of luck on all this stuff. On the sister site I believe there is a list of questions that a member put together to ask your neph, it may be worth checking out this site if you get a chance. Really good info available in several different categories there. (click on the link below to get there) Bonnie kalyanav wrote: Hi, I forgot to ask something in my previous mail. When you guys were diagonised with IgAN, how much was your functionality of the kidneys? I am sorry to ask you all so many questions but my neph told me that he would be letting me know these details today and so was just curious... I can totally understand what Aruna went through because I just got married this February and my problems started from March. Poor thing..my husband has to go through all this with me. We were actually planning our first trip this thanksgiving to Hawaii, but now I am not sure whether we will go or not...I am so frustated because of this stupid IgAN already...anyways haffun you all.... priya 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...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi Priya, When I was diagnosed in october 2000 my kidney function was at 75%. I am going to neph in 2 weeks so I will hopefully let you know what it is at now. Bree Another question Hi, I forgot to ask something in my previous mail. When you guys were diagonised with IgAN, how much was your functionality of the kidneys? I am sorry to ask you all so many questions but my neph told me that he would be letting me know these details today and so was just curious... I can totally understand what Aruna went through because I just got married this February and my problems started from March. Poor thing..my husband has to go through all this with me. We were actually planning our first trip this thanksgiving to Hawaii, but now I am not sure whether we will go or not...I am so frustated because of this stupid IgAN already...anyways haffun you all.... priya 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...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 I will join in with the chant: " GO TO HAWAII! " There is no reason you shouldn't. Get the info you need from your neph about diet (there may be no changes if you are early on in the disease and any diet changes will be based on your labs, they are different for everyone) and any meds you need to be on. Bring your meds with you and watch your diet. Heck I just spent a week in LasVegas in July and a week in AZ right before my biopsy last Sept. There is no reason not to travel and you will find the break from the normal a good diversion to clear your head. When I was diagnosed I was at 35% kidney function, after aggressive treatment with prednisone for high protein spill my function came back up to about 48%. I have the aggressive form of the disease though and went from normal to 35% function in about 6 months. Most of us have the slowly progressing form of the disease that takes 20+ years to do enough damage to be noticeable. Hang in there and don't worry about asking questions, that's what we are here for. Also remember your husband married you because he loves you, I think it's hard on them because we try to " play " normal on our really down days and they know we are ill. My best advice for a long happy marriage is to be open with him about your illness and it's many faces and allow him into your life fully. My husband of 17 years has proven to be much stronger than I ever imagined in the face of this illness, I'm sure yours will surprise you too. Amy G. Another question > > > > Hi, > > I forgot to ask something in my previous mail. When you guys were > diagonised with IgAN, how much was your functionality of the > kidneys? I am sorry to ask you all so many questions but my neph > told me that he would be letting me know these details today and so > was just curious... > > I can totally understand what Aruna went through because I just got > married this February and my problems started from March. Poor > thing..my husband has to go through all this with me. We were > actually planning our first trip this thanksgiving to Hawaii, but > now I am not sure whether we will go or not...I am so frustated > because of this stupid IgAN already...anyways haffun you all.... > > priya > > > > > > > > > > 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...
Guest guest Posted November 10, 2004 Report Share Posted November 10, 2004 Priya, I totally agree with Ali, don't let IgAN stop you from doing most things, even travel. I travelled from Calgary, Canada to San Diego, US. I had to go through Customs with about half a dozen bottles of pills and 3 pages of emails from my neph to prove the drugs were for me and I'm not trying to smuggle them, etc. We had an awesome time over in SD. And I am sure you will have a great time in Hawaii too! : ) Sophia > In a message dated 11/9/04 8:34:58 PM Eastern Standard Time, bd4679@y... > writes: > > > priya > > Go to Hawaii!!!!!! > > We've all been diagnosed at different times, some early, some late, and some < > like me> misdiagnosed for years So treatment and administering of drugs > will vary. It's been said many times here this week.... Keep BP in check. > > And go to Hawaii > > Ali > > > Quote Link to comment Share on other sites More sharing options...
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