Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 , I figured that I would post this to everyone, as well. My diagnosis came about when I was trying to donate plasma at a local center. They keep telling me that my protein stick was 2+ then 3+ two weeks later. I then went to my GP and my protein was 581mg and I had 2+ hematuria (not grossly seen), creatinine was normal. Then I was referred to the Nephrologist who confirmed those results but was not worried about it since I had recently had a sinus infection. Meanwhile I was referred to the Urologist for and IVP and cystoscopy to rule out kidney stones, cancer or polyps. No cigar there so I went back to the Nephrologist. This is about 5 months later and my 24h protein went up to 1100mg and my creatinine went to 1.8. Three weeks ago I had a laproscopic kidney biopsy (not a needle biopsy) which confirmed the diagnosis of IgAN. My protein spill has gone down to 850mg, and my creatine is down to 1.6. Right now I am only taking Fish oil, ACE inhibitor and Vit. E. Tomorrow I find out about other treatments... I will be asking the pregnancy questions, so I will pass them onto the group. Is there any one out there that is NOT taking pred/steroids? And how are you doing with control of IgAN? , my family too is about to kick my off the internet. Its good to know there is someone similar out there. Welcome >My diagnosis is very new (December). I have spent days on the >internet. I am constantly searching for more information. My doctor >and my family wish I would stay off the internet, but it's hard. >While I'm not glad either of us is in this situation, I am glad to >find another woman closer to my age (I'm 34). It's mostly mothers of >young boys who are out there. Don't get me wrong, I am glad I have >anyone to talk to that can relate. > >I have been afraid to ask my doctor about pregnancy. There seems to >be some conflicting information out there and it seems to be on a >case by case basis. Anyway, if you do ask, I would like to know what >your doctor says. I will ask mine when I do another 24 hour urine >later this month. > >How did your case come about? Mine is posted in the files area on >the egroup. > >Do you have nephrotic syndrome? I have 4+ protein from my first 24 >hour urine and from time to time gross hematuria (blood in the >urine). I am taking alternate-day doses of Prednisone, Zestril (ace >inhibitor), and pepcid (to help with Pred side effects. I'm taking >it one day at a time. Please feel free to email me anytime. > > > > > > > >> Hi all, >> >> I was just diagnosed with IgAN two days ago and I have been an >internet scavage since then. Your egroup was a welcome site, as you >emails have been. I have another MD appoitment on Friday to decide >my treatment approach and to find out how far I am along. Any >suggestions or questions to ask my MD would help me tremendously. >> >> A little about myself.... I am 26 years old, a physical therapist, >single (but hopefully not for long), have an extremely supportive >family, live in SC.... >> >> Thank you already for all your inspirations!! >> >> Nussen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 Re: Welcome > > , my family too is about to kick my off the internet. Its good to > know there is someone similar out there. > > > Well don't let them take the internet away But on the other hand, I can virtually guarantee that you won't find anything that you haven't heard about on this group. Seriously though, I guess we all go through that desperate search for information, but I think it's easy to overdo it. Do let us know what your doc says about pregnancy. This is a black hole when it comes to IgAN. By that I mean that real hard information is scarce, and it very much depends on your doctor. If he says no to pregnancies, ask to know what it is specifically about your condition that makes it inadvisable. I'm hoping to eventually put an FAQ together that would include information on pregnancy, and I learn stuff for all of you every day. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 , I am not taking steroids, but I need to investigate it further. My physician has not suggested it up until this point, but it may be considered after the results of my first biopsy (which I just completed on Tuesday). Sounds like the ACE-STERIOD-FISH OIL treament plan is having some effects for you though, so congratulations. > >> Hi all, > >> > >> I was just diagnosed with IgAN two days ago and I have been an > >internet scavage since then. Your egroup was a welcome site, as you > >emails have been. I have another MD appoitment on Friday to decide > >my treatment approach and to find out how far I am along. Any > >suggestions or questions to ask my MD would help me tremendously. > >> > >> A little about myself.... I am 26 years old, a physical therapist, > >single (but hopefully not for long), have an extremely supportive > >family, live in SC.... > >> > >> Thank you already for all your inspirations!! > >> > >> Nussen > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 > , > > > Sounds like the ACE-STERIOD-FISH OIL treament plan is having some > effects for you though, so congratulations. FYI, I am on prednisone and an ace, not fish oil. My doc has mentioned it as the next step if the prednisone does not help. I'm 3 weeks on the meds, and I am seeing improvement in the hematuria and the protein. I don't know if it will last, but I'm hopeful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 I'm not taking pred/steroids. -david > >> Hi all, > >> > >> I was just diagnosed with IgAN two days ago and I have been an > >internet scavage since then. Your egroup was a welcome site, as you > >emails have been. I have another MD appoitment on Friday to decide > >my treatment approach and to find out how far I am along. Any > >suggestions or questions to ask my MD would help me tremendously. > >> > >> A little about myself.... I am 26 years old, a physical therapist, > >single (but hopefully not for long), have an extremely supportive > >family, live in SC.... > >> > >> Thank you already for all your inspirations!! > >> > >> Nussen > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Hi and I was new to the group a few months ago. IPF Diagnosis was made 3/06. The pulmonary doctor said that I should go to pulmonary rehab and contact the lung transplant program before I need it. In July I had the 3 day evaluation. At this time I am too healthy for a transplant, but will be listed if and when the time comes. Doctor also prescribed prednisone which has made a big improvement with the symptoms. I am also taking NAC in liquid form. At rehab I used O2 while exercising. Recently pul doc prescribed O2 for in home use when exercising. I find that it makes a diffence when I make the bed and when I walk the dog. I stopped going to rehab for a few weeks due to my friend being in the hospital, having a new grandchild and going back to work. I noticed that I was beginning to decondition, so I went back to rehab. You will find that a lot of people in this group are on prednisone-- all different quantities. There are also a lot of people on O2 24/7. They refer to this disease as the monster or the beast. I think of it as the invisible monster or invisible beast. One of the most positive experiences for me regarding this disease was seeing several people who had transplants and how well they were doing and how happy they were that they had the transplants. I happen to live near a city with teaching hospitals. University of Pennsylvania has an interstitial lung disease program and a transplant program. I think Temple University also has the programs. Welcome to the group. I wish you didn't need it, but it is very helpful. Joyce IPF 3/06 > > Hello > I am new to this site. I guess I need to talk to other people who have breathing issues. I was just discharged from the hospital yesterday due to pulmonary hypertension due to my pulmonary fibrosing. I had a heart cath. Anyway, my heart is fine..lungs are terrible. Was told there was nothing else to be done for me. I have been told I should have beenput on the lung transplant list when first diagnosed but I didnt. Prognosis is not good. Does anyone have any positive news about this disease? I have so many questions. Can anyone relate? I am starting to get SOB even when not exerting. Guess I just needed to talk. If anyone listened to me....thanks. > Quote Link to comment Share on other sites More sharing options...
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