Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Hi Darren Wow that sounds like a scary experience you had recently - I'm glad it has calmed down again! So how often are you going to see your consultant now then? or don't you know that yet? Yeah I found the leicester guy too - Prof Feehally? He seems very well respected in IgAN research area as I found out - I have actually tried to track down a copy of a recent publication he did called " Treating IGA Nephropathy - who, when and how? " But can't find anything available - I'm going to see if I can get it through work! I think though, I'd want to see our local Nehprologist in the first instance. Dave > Morning Dave > > When i was diagnosed in 1996 at Leeds Gen Inf, they offered very little in > the way of treatment and the only request was that i had regular check ups > at my GP and follow ups with the Hospital every 12 months. > > It became very scary, knowing i had IgAN with all the possible consequences, > but there was no one offering any kind of advice. > > After 3 years of going back to the GP and hospital, i very rashly decided it > was doing no good. My urine always showed +2/3 for blood and protein, but > everything else was fine, so i decided to just get on with my life, and > hopefully as the hospital had said " it will probably be old age rather than > IgAN that causes me any problems " . > > In the meantime i always seemed to suffer very silly ailmements, colds, sore > throats, tiredness and occassionally my body would swell up ( sometimes i > felt like the michelin man !!!)but never associated any of these to IgAn > (not sure they are !) > > Then about 10 weeks ago, i had an incredible amount of pain in my kidney > area, all across my lower back. It lasted about half an hour, it was so > intense. My body swelled up. It was horrible. > > I was admitted to hospital. had all sorts of tests, at first they thought > kidney stones, then they told me i had pulled something in my back. After > many tests they had no idea, the only thing they could suggest wasthat the > IgAN had flared up. After more tests they concluded that it was and i should > be referred back to the Renal Unit in Leeds. > > I have since had a few visits to my GP, who is brilliant, very > understanding. We have checked bllods, urine and bp regular. The blood and > protein is still +3 in my urine, my bp was high on two occassions but has > since settled and my kidney function is very normal. The only issues i have > are the lower back pain which is constant over a day and the tiredness. > > I have changed my diet as mentioned, no alcohol and a healthy diet. Not sure > how long i can keep up the alcohol thing but i do feel a lot better because > of this. > > I will see what the specialist says on the 16th, and take it from there. I > believe it will be a case of monitoring as before, which so long as the > results stay the same then no problem. > > Im just thankful it is all settling down, and hope that everyone who needs > the help more than me is getting it. > > On a final note, I have tracked down ( thanks to Sally in the UK) A Neph at > Leicester Gen Inf who actually says he is a specialist in IgAN. I have > spoken to his secretrary and explained my situation, she has confirmed he > would be willing to see me if i can get my GP to refer me. Sounds good if i > need to go that far in the future. > > Hope this helps. > > Regards > > Darren > Huddersfield, UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 I guess it's the old cliche about dwelling on the past when all you can influence is the future huh? ) Yeah hereditary factors are a bit of a concern too - as in what may my genes have passed onto my daughter!!? But that's true of so many things with more proven genetic patterns than IgAN I suppose. > Dave I love your question, it's one I've been asking myself since my diagnosis. As my neph says " Don't even think about it because you'll spend the rest of your life trying to find out *when and why*...and you never will. " It was a hard thing to get over, not knowing why or when this happened....I still spend nights thinking about it now and then but realize I'd probably drive myself crazy doing that. All I DO know is back in Nov 2002 all was normal on my routine yearly labs and urine tests. So sometime between then and now this happened. > > I also wonder about the heredity factors, my family is wrought with kidney problems. Mom has had exploratory surgery for unexplained shadows on the kidneys that came up inconclusive, my sisters and I have all had numerous bladder/kidney infections, and 2 of my brothers have had kidney stones. Makes you wonder if we have some sort of genetic disposition to kidney problems. > > Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 Hi dave Not sure until i go on the 16th. Would be vert interested in the paper ! Darren Re: How long? Hi Darren Wow that sounds like a scary experience you had recently - I'm glad it has calmed down again! So how often are you going to see your consultant now then? or don't you know that yet? Yeah I found the leicester guy too - Prof Feehally? He seems very well respected in IgAN research area as I found out - I have actually tried to track down a copy of a recent publication he did called " Treating IGA Nephropathy - who, when and how? " But can't find anything available - I'm going to see if I can get it through work! I think though, I'd want to see our local Nehprologist in the first instance. Dave > Morning Dave > > When i was diagnosed in 1996 at Leeds Gen Inf, they offered very little in > the way of treatment and the only request was that i had regular check ups > at my GP and follow ups with the Hospital every 12 months. > > It became very scary, knowing i had IgAN with all the possible consequences, > but there was no one offering any kind of advice. > > After 3 years of going back to the GP and hospital, i very rashly decided it > was doing no good. My urine always showed +2/3 for blood and protein, but > everything else was fine, so i decided to just get on with my life, and > hopefully as the hospital had said " it will probably be old age rather than > IgAN that causes me any problems " . > > In the meantime i always seemed to suffer very silly ailmements, colds, sore > throats, tiredness and occassionally my body would swell up sometimes i > felt like the michelin man !!!)but never associated any of these to IgAn > (not sure they are !) > > Then about 10 weeks ago, i had an incredible amount of pain in my kidney > area, all across my lower back. It lasted about half an hour, it was so > intense. My body swelled up. It was horrible. > > I was admitted to hospital. had all sorts of tests, at first they thought > kidney stones, then they told me i had pulled something in my back. After > many tests they had no idea, the only thing they could suggest wasthat the > IgAN had flared up. After more tests they concluded that it was and i should > be referred back to the Renal Unit in Leeds. > > I have since had a few visits to my GP, who is brilliant, very > understanding. We have checked bllods, urine and bp regular. The blood and > protein is still +3 in my urine, my bp was high on two occassions but has > since settled and my kidney function is very normal. The only issues i have > are the lower back pain which is constant over a day and the tiredness. > > I have changed my diet as mentioned, no alcohol and a healthy diet. Not sure > how long i can keep up the alcohol thing but i do feel a lot better because > of this. > > I will see what the specialist says on the 16th, and take it from there. I > believe it will be a case of monitoring as before, which so long as the > results stay the same then no problem. > > Im just thankful it is all settling down, and hope that everyone who needs > the help more than me is getting it. > > On a final note, I have tracked down ( thanks to Sally in the UK) A Neph at > Leicester Gen Inf who actually says he is a specialist in IgAN. I have > spoken to his secretrary and explained my situation, she has confirmed he > would be willing to see me if i can get my GP to refer me. Sounds good if i > need to go that far in the future. > > Hope this helps. > > Regards > > Darren > Huddersfield, UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2003 Report Share Posted December 3, 2003 HI Sophia, Your experience is very common. I also had two biopsies, one in 1988 and the second in 1997 when I was confirmed as having IgAN. However, I was symptomatic since I was a teenager, so I am sure I had it for over 25 years. Sorry you were diagnosed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hi , I didn't realize that the experience is so common, and that it takes *that* long for such a disease to progress significantly - although I guess it makes sense. My own personal concern is that the second biopsy showed one crescent...which according to my neph suggests a more rapid decline of kidney function over time. And yet it took 10 years between the first and second biopses - which I think it's pretty slow, unless I'm wrong somewhere....?? Sophia > HI Sophia, > > Your experience is very common. I also had two biopsies, one in 1988 and the > second in 1997 when I was confirmed as having IgAN. However, I was symptomatic > since I was a teenager, so I am sure I had it for over 25 years. > > Sorry you were diagnosed. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hahaha Dave....hardly a youngster anymore....feel so old some days.... ; ) From what I recall from the first biopsy (and the doc didn't really show me much of anything to confirm the diagnosis), yes, it sounded more like he diagnosed it by a " process of elimination " - my symoptions didn't fit anything, so he thought it is probaby IgAN. I remember asking him about what I should do, and he told me that - at my particular stage of the disease - it was too early to tell, and that there was nothing I could do, but wait 10 years till it got worse. I never really had any symptoms after that, so I kinda forgot about it again until a routine checkup. The alternative would have been to live for 10 years in fear and uncertainty, and nothing I can do about it. *sigh* Sophia > > Hi , Hi Darren, > > > > I was diagnosed March 2002 with IgAN due to a routine medical > > checkup and bloodwork. > > > > However, it was suspected that I could possibly have IgAN as far > > back as when I was 19 (in 1990). That came about from a car > > accident that probably induced a flareup due to trauma. I had a > > biopsy done at that time too - but they said that it was too early > > to tell whether it would develop into IgAN. > > > > So it took me over 10 years for a significant difference in kidney > > function to occur to really diagnose the disease. > > > > Sophia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hi Sophia, Even a 20+ year course between initial symptoms and significant compromise of renal function is not at all uncommon. Remember too that the majority of times IgAN never progresses to ESRD. Unfortunately in your case, it does not appear you are in that category though. In a message dated 12/4/2003 5:27:54 AM Pacific Standard Time, yipee_ladybug@... writes: > And yet it took 10 years between the > first and second biopses - which I think it's pretty slow, unless > I'm wrong somewhere....?? > > Sophia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 We have many cases in this group where IgAN took decades to progress to end-stage. In my case, 25 years from the first appearance of blood in urine. Some of the our moderators have even gone beyond that, and are still not at end-stage. On the other hand, we have had others who were diagnosed suddenly, and reached end-stage within just a couple of years. So it depends. To me, it seems like people who don't have particularly heavy proteinuria progress much more slowly. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 tell me about it .... and to make it worse, at 36 I have more grey in my hair than my two older brothers put together!!! Can I at least blame that on IgAN? ) Re: How long? Hahaha Dave....hardly a youngster anymore....feel so old some days.... ; ) >From what I recall from the first biopsy (and the doc didn't really show me much of anything to confirm the diagnosis), yes, it sounded more like he diagnosed it by a " process of elimination " - my symoptions didn't fit anything, so he thought it is probaby IgAN. I remember asking him about what I should do, and he told me that - at my particular stage of the disease - it was too early to tell, and that there was nothing I could do, but wait 10 years till it got worse. I never really had any symptoms after that, so I kinda forgot about it again until a routine checkup. The alternative would have been to live for 10 years in fear and uncertainty, and nothing I can do about it. *sigh* Sophia > > Hi , Hi Darren, > > > > I was diagnosed March 2002 with IgAN due to a routine medical > > checkup and bloodwork. > > > > However, it was suspected that I could possibly have IgAN as far > > back as when I was 19 (in 1990). That came about from a car > > accident that probably induced a flareup due to trauma. I had a > > biopsy done at that time too - but they said that it was too early > > to tell whether it would develop into IgAN. > > > > So it took me over 10 years for a significant difference in kidney > > function to occur to really diagnose the disease. > > > > Sophia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 tell me about it .... and to make it worse, at 36 I have more grey in my hair than my two older brothers put together!!! Can I at least blame that on IgAN? ) Re: How long? Hahaha Dave....hardly a youngster anymore....feel so old some days.... ; ) >From what I recall from the first biopsy (and the doc didn't really show me much of anything to confirm the diagnosis), yes, it sounded more like he diagnosed it by a " process of elimination " - my symoptions didn't fit anything, so he thought it is probaby IgAN. I remember asking him about what I should do, and he told me that - at my particular stage of the disease - it was too early to tell, and that there was nothing I could do, but wait 10 years till it got worse. I never really had any symptoms after that, so I kinda forgot about it again until a routine checkup. The alternative would have been to live for 10 years in fear and uncertainty, and nothing I can do about it. *sigh* Sophia > > Hi , Hi Darren, > > > > I was diagnosed March 2002 with IgAN due to a routine medical > > checkup and bloodwork. > > > > However, it was suspected that I could possibly have IgAN as far > > back as when I was 19 (in 1990). That came about from a car > > accident that probably induced a flareup due to trauma. I had a > > biopsy done at that time too - but they said that it was too early > > to tell whether it would develop into IgAN. > > > > So it took me over 10 years for a significant difference in kidney > > function to occur to really diagnose the disease. > > > > Sophia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 tell me about it .... and to make it worse, at 36 I have more grey in my hair than my two older brothers put together!!! Can I at least blame that on IgAN? ) Re: How long? Hahaha Dave....hardly a youngster anymore....feel so old some days.... ; ) >From what I recall from the first biopsy (and the doc didn't really show me much of anything to confirm the diagnosis), yes, it sounded more like he diagnosed it by a " process of elimination " - my symoptions didn't fit anything, so he thought it is probaby IgAN. I remember asking him about what I should do, and he told me that - at my particular stage of the disease - it was too early to tell, and that there was nothing I could do, but wait 10 years till it got worse. I never really had any symptoms after that, so I kinda forgot about it again until a routine checkup. The alternative would have been to live for 10 years in fear and uncertainty, and nothing I can do about it. *sigh* Sophia > > Hi , Hi Darren, > > > > I was diagnosed March 2002 with IgAN due to a routine medical > > checkup and bloodwork. > > > > However, it was suspected that I could possibly have IgAN as far > > back as when I was 19 (in 1990). That came about from a car > > accident that probably induced a flareup due to trauma. I had a > > biopsy done at that time too - but they said that it was too early > > to tell whether it would develop into IgAN. > > > > So it took me over 10 years for a significant difference in kidney > > function to occur to really diagnose the disease. > > > > Sophia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 I guess that encapsulates why I'm so scared at times - I know that even when I get my results on Monday that it tells me little because I don't know how long I've had this - so even bad results can mean a long time to End-Stage and good results can be the same - depending on how I progress so I guess I've a long year or so ahead of me to see what's happening!? Re: How long? We have many cases in this group where IgAN took decades to progress to end-stage. In my case, 25 years from the first appearance of blood in urine. Some of the our moderators have even gone beyond that, and are still not at end-stage. On the other hand, we have had others who were diagnosed suddenly, and reached end-stage within just a couple of years. So it depends. To me, it seems like people who don't have particularly heavy proteinuria progress much more slowly. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 I guess that encapsulates why I'm so scared at times - I know that even when I get my results on Monday that it tells me little because I don't know how long I've had this - so even bad results can mean a long time to End-Stage and good results can be the same - depending on how I progress so I guess I've a long year or so ahead of me to see what's happening!? Re: How long? We have many cases in this group where IgAN took decades to progress to end-stage. In my case, 25 years from the first appearance of blood in urine. Some of the our moderators have even gone beyond that, and are still not at end-stage. On the other hand, we have had others who were diagnosed suddenly, and reached end-stage within just a couple of years. So it depends. To me, it seems like people who don't have particularly heavy proteinuria progress much more slowly. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 I may have kidney failure, but I'm 50, and my hair definitely is not grey, at least not what's left of it Pierre Re: How long? > tell me about it .... and to make it worse, at 36 I have more grey in my hair than my two older brothers put together!!! Can I at least blame that on IgAN? ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 lol you enjoy spoiling my excuses Þ Re: How long? > tell me about it .... and to make it worse, at 36 I have more grey in my hair than my two older brothers put together!!! Can I at least blame that on IgAN? ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 LOL. I won't touch your excuse for being shrivelled, though. Remember, it's true as long as YOU believe it Pierre Re: How long? > tell me about it .... and to make it worse, at 36 I have more grey in my hair than my two older brothers put together!!! Can I at least blame that on IgAN? ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Hey I was nervous!!! I'll never forget that test .... it was horrible lol - it was when I saw the size of the TV - was as if we were at the movies, I was expecting some popcorn and a coke to get handed to me!! Let's watch Dave's bits on widescreen .... at least there was no surround sound! Of course, my GP told me it was a wee tiny fibre optic camera - which it is - he didn't tell me it was attached to a tube thicker than a pen which pumps water into your bladder :o/ > LOL. I won't touch your excuse for being shrivelled, though. Remember, it's > true as long as YOU believe it > Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Hi Guys Well, talking about biopsies. I did get bad news I am afraid -my figures continue to go down so I had to have my 3rd biopsy just before Christmas. Get the full results on January 6th. As well as Atenolol 50mg I am now on 5mg of Amlodipine (excuse my spelling) as my blood pressure wasn't being controlled. I was initially diagnosed in 1989 with the disease - however I remain positive. I might have to start on steroids in the New Year but Hey! if its going to help then I shall put up with them. I wish you all a peaceful and healthy New Year if I don't speak to you before tomorrow Cheers Jeanie ( Exiled Scot) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Hi Jeanie, I am really sorry you had to endure a third biopsy! Not fun at all is it? That is very disappointing that your numbers continue to decline. Please do let us know the results when you get them Jan 6th. I hope you are pleasantly surprised! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2003 Report Share Posted December 30, 2003 Hello Jeanie - an exiled scot? what did you do that was so bad we threw you out then? ) I'm sorry things are continuing to go downhill for you! 1989 was the year I was married so there's both of us got something to commiserate?!?! Only kidding!! I hope that the results aren't as bad as you are expecting and you keep your positive approach ) Dave Re: How long? Hi Guys Well, talking about biopsies. I did get bad news I am afraid -my figures continue to go down so I had to have my 3rd biopsy just before Christmas. Get the full results on January 6th. As well as Atenolol 50mg I am now on 5mg of Amlodipine (excuse my spelling) as my blood pressure wasn't being controlled. I was initially diagnosed in 1989 with the disease - however I remain positive. I might have to start on steroids in the New Year but Hey! if its going to help then I shall put up with them. I wish you all a peaceful and healthy New Year if I don't speak to you before tomorrow Cheers Jeanie ( Exiled Scot) ---------- Outgoing mail is certified Virus Free. Checked by AVG Anti-Virus (http://www.grisoft.com). Version: 7.0.209 / Virus Database: 261.5.5 - Release Date: 30/12/2003 Quote Link to comment Share on other sites More sharing options...
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