Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hi there, I am Dan and I live in Cyprus, a small island in the eastern Mediterranean to the northwest of Israel. I have recently joined your discussion group and for a few days now have been watching your chat with extreme interest. You are all very interesting people and I am glad I have been accepted to join you. It is the first time that I participate in an electronic bulletin board, although I've been surfing the Web for quite sometime now, so please judge me with some clemency. I am also an IgAN sufferer, a condition that has been officially confirmed at the beginning of last month, although my neph and I knew all along that I had it because of all the common symptoms that you all know about. It all started about fifteen or sixteen years ago when a routine urinalysis showed traces of blood (microhematuria) and protein in my urine. I was worried a lot because my mind went to a tumor or something equally serious. My GP referred me then to a urologist who carried out all the necessary tests to scrutinize for cancer, including a cystoscopy -exammination of the bladder through the urethra! :-( Fortunately, all those tests proved negative and I was greatly relieved, albeit not completely. Some deep worry remained with me constantly for in all deliberate urine labs that I did hencefoth, the symptoms of microhematuria and microproteinuria were always there. But my urologist never actually referred me officially to a nephrologist back then and for another five years or so I did nothing about it, although I was subconsciously thinking that something was wrong with me. During all those years and even before my symptoms were officially observed, I also had some mild hypertension which I completely ignored, and so did my GP and urologist as a matter of fact. In retrospect, these symptoms must have been there all along, perhaps for more than 20 years (now I am 45), albeit unobserved. It was after an unexpected spree of heavy visible hematuria -which scared me to death-during an upper respiratory infection, that I rushed to the outpatient clinic of my local hospital. The GP there noticed immediately my high blood pressure and after carrying out the necessary lab tests, which showed no urinary tract infection, and listening to my story, begun suspecting some kind of glomerulonephritis. In the meantime, the macrohematuria was over after a couple of days but as my blood pressure remained above normal she prescribed atenolol (a beta blocker anti-hypertensive), which soon kept my bp at bay. I continued to be seeing her for a couple of years, being on atenolol and doing routine blood and urine lab tests -everything being normal except always for some blood and protein in the urine. But she never ordered a 24 hour urine protein and creatinine clearance test, although once she referred me for an ultra sound scan and a renogram (in the early '90s I think), things that proved to be normal back then. The micro-symptoms though continued insidiously and persistently, fortunately without worsening, although a couple more times I showed again visible macrohematuria, whence the gp decided at last to refer me to the nephrologist of the hospital -it was around 1996 I think. The neph repeated all the necessary lab tests, listened to my story and quickly suspected Berger's disease. Rather curiously he kept me on atenolol for my high bp for a couple more years -the drug did its job fine on me lowering my bp within normal range, although it often lowered also my pulse rate just below 60. Then, suddenly he changed me to Atacand, an angiotensin II receptor inhibitor which was also very fine on me, with no observable side effects. In the meantime my serum creatinine started rising slightly above normal and my urine became very foamy as my proteinuria started to increase. A new ultra sound scan now showed some kidney damage and also a cyst that had appeared in my left kidney (the neph said that this has nothing to do with my IgAN). After finding out the exact name and description of my condition, I did a lot of my own research on the Internet and learned a lot about it -in fact much more than my neph was willing to tell me. It was on the Internet that I found about the possible benefits of fish oil and vitamin E and also about the role of ACE inhibitors in lowering proteinuria as well as hypertension. I finally decided on a kidney biopsy at the beginning of last July, which confirmed my IgAN and upon my insistence the neph prescribed enalapril (5mg twice a day), which I started since the 1st of August, giving up on Atacand. The effects of this new drug for me remain to be seen as yet. My secr just before taking the enalapril was around 1.5 mg/dl, I had a cr.clear. of about 77 and proteinuria around 1.5gr/24hr. All other lab parameters seem to be normal so far, except for my blood urate which is elevated too, for quite some years now -between 7 and 8 mg/dl. Besides enalapril I now also take fish oil (5-6 grams per day), vitamin A,B and E supplements and also allopurinol for my uric acid -which seems to do a good job in keeping it at bay. This is my story folks. Sorry for taking this long. I won't be bothering you with such long messages again. It' s been very nice meeting you. Farewell, good health to all and best wishes. Reagards, Dan. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hey Dan, Where ya' goin'? There's no need to leave. As always, everyone is quite welcome in the group and I personally would appreciate it if you stayed. I love the international aspect of this group. It really makes me feel as though I am not alone with this strange and moody disease. So if you are inclined, I can only imagine that the group would benefit from your input (no matter how intermitten it may be). I know I'm not that active with posting my own info and thoughts to the group but I read every day and I pray for everyone. As a matter of fact, I'll offer an olive branch of sorts. Here.... It seems that besides the teenagers I am the youngest in the group with this disease. I am 24, I was diagnosed by biopsy when I was 23. My creatine is low, my protein is low, and so is my BP. My blood in the urine is quite high though and I have bouts of extreme flank pain. My flank pain is relentless. No matter what I take. I refuse to take hardly any pain pills anymore b/c I am afraid I may become addicted and then where will I be? For the past month I have been sick with a low grade fever running for over 27 days now, excessive urination, severe flank pain, sleeplessness, bladder pain, and fatigue. I have seen approximately 7 doctor's that have no clear what is wrong with me. I have been poked and stabbed more ways then most and I may only releif comes from reading the posts of the others. Knowing that we all have fears,aggrevations, trials and tribulations, and our own crosses to bare seems to make all this easier for me to cope with. And it is only since I joined this group that I have learned that. I also never knew how strong people could be. Even in the face of great doubt...they come out swinging. (Thoughts of Kirk and some newbies come to mind.) Whenever anyone is sick in this group I feel for them as I do for you. So please even if you don't post often let us know how your side of the world is doing. Truly, (Chattanooga, TN, USA) PS Please don't apologize for long posts. Each of us has written longer ones. And on another note, I just found out that I am taking a trip to see Dr. n at the Kirklen Clinic located at UAB. He is supposedly the best in North America for IgAN. And he is able to see me in 2 weeks!!! http://www.health.uab.edu/show.asp?durki=17796"Blessed are we who can laugh at ourselves for we shall never cease to be amused." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 , Most of your symptoms seem to be the same as ralphs. We have not found anything to help the pain or fatigue either. Do you also have the swelling in your legs, Ralph seems to get lots of swelling. The doctors so far dont have any help as far as pain and say that Ralph should not be having fatigue like he does. Ralph has been trying the tens machine for pain but we are not sure that it will help for him. He said that when he takes it off it seems to make the pain worse than it was before. Connie and Ralph P.S. Welcome to the group Dan. We always welcome all input we can get. --- Boatrite wrote: > > Hey Dan, > > Where ya' goin'? There's no need to leave. As > always, everyone is quite welcome in the group and I > personally would appreciate it if you stayed. I > love the international aspect of this group. It > really makes me feel as though I am not alone with > this strange and moody disease. So if you are > inclined, I can only imagine that the group would > benefit from your input (no matter how intermitten > it may be). I know I'm not that active with posting > my own info and thoughts to the group but I read > every day and I pray for everyone. As a matter of > fact, I'll offer an olive branch of sorts. > > Here.... > > It seems that besides the teenagers I am the > youngest in the group with this disease. I am 24, I > was diagnosed by biopsy when I was 23. My creatine > is low, my protein is low, and so is my BP. My > blood in the urine is quite high though and I have > bouts of extreme flank pain. My flank pain is > relentless. No matter what I take. I refuse to > take hardly any pain pills anymore b/c I am afraid I > may become addicted and then where will I be? > > For the past month I have been sick with a low grade > fever running for over 27 days now, excessive > urination, severe flank pain, sleeplessness, bladder > pain, and fatigue. I have seen approximately 7 > doctor's that have no clear what is wrong with me. > I have been poked and stabbed more ways then most > and I may only releif comes from reading the posts > of the others. Knowing that we all have > fears,aggrevations, trials and tribulations, and our > own crosses to bare seems to make all this easier > for me to cope with. And it is only since I joined > this group that I have learned that. I also never > knew how strong people could be. Even in the face of > great doubt...they come out swinging. (Thoughts of > Kirk and some newbies come to mind.) > > Whenever anyone is sick in this group I feel for > them as I do for you. So please even if you don't > post often let us know how your side of the world is > doing. > > Truly, > > (Chattanooga, TN, USA) > > > > PS > > Please don't apologize for long posts. Each of us > has written longer ones. And on another note, I > just found out that I am taking a trip to see Dr. > n at the Kirklen Clinic located at UAB. He is > supposedly the best in North America for IgAN. And > he is able to see me in 2 weeks!!! > > http://www.health.uab.edu/show.asp?durki=17796 > > > > " Blessed are we who can laugh at ourselves for we > shall never cease to be amused. " > > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 , Please let us know how things go with Dr. n. I hope your fever gets resolved soon. Marty Re: Dan's story Hey Dan, Where ya' goin'? There's no need to leave. As always, everyone is quite welcome in the group and I personally would appreciate it if you stayed. I love the international aspect of this group. It really makes me feel as though I am not alone with this strange and moody disease. So if you are inclined, I can only imagine that the group would benefit from your input (no matter how intermitten it may be). I know I'm not that active with posting my own info and thoughts to the group but I read every day and I pray for everyone. As a matter of fact, I'll offer an olive branch of sorts. Here.... It seems that besides the teenagers I am the youngest in the group with this disease. I am 24, I was diagnosed by biopsy when I was 23. My creatine is low, my protein is low, and so is my BP. My blood in the urine is quite high though and I have bouts of extreme flank pain. My flank pain is relentless. No matter what I take. I refuse to take hardly any pain pills anymore b/c I am afraid I may become addicted and then where will I be? For the past month I have been sick with a low grade fever running for over 27 days now, excessive urination, severe flank pain, sleeplessness, bladder pain, and fatigue. I have seen approximately 7 doctor's that have no clear what is wrong with me. I have been poked and stabbed more ways then most and I may only releif comes from reading the posts of the others. Knowing that we all have fears,aggrevations, trials and tribulations, and our own crosses to bare seems to make all this easier for me to cope with. And it is only since I joined this group that I have learned that. I also never knew how strong people could be. Even in the face of great doubt...they come out swinging. (Thoughts of Kirk and some newbies come to mind.) Whenever anyone is sick in this group I feel for them as I do for you. So please even if you don't post often let us know how your side of the world is doing. Truly, (Chattanooga, TN, USA) PS Please don't apologize for long posts. Each of us has written longer ones. And on another note, I just found out that I am taking a trip to see Dr. n at the Kirklen Clinic located at UAB. He is supposedly the best in North America for IgAN. And he is able to see me in 2 weeks!!! http://www.health.uab.edu/show.asp?durki=17796 "Blessed are we who can laugh at ourselves for we shall never cease to be amused." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Dear Dan, Please don't stop writing and conversing with all of us. It is always interesting to hear how others found out about the disease, how they are feeling and what they are going through. I was diagnosed in May 2001, and am quite interested in how others deal with this disease, and what I might be in for on down the road. I go for a check up in September to see how things look, and how my protein levels are with diet and excercise. Pray that I am not going to have to be put on any medication, and that things look good for me. I say a prayer for all my IGA friends often. >From: patroklos@... >Reply-To: iga-nephropathy >To: iga-nephropathy >Subject: Dan's story >Date: Mon, 13 Aug 2001 21:49:27 +0300 > >Hi there, > >I am Dan and I live in Cyprus, a small island in the eastern Mediterranean >to the northwest of Israel. I have recently joined your discussion group >and for a few days now have been watching your chat with extreme interest. >You are all very interesting people and I am glad I have been accepted to >join you. It is the first time that I participate in an electronic bulletin >board, although I've been surfing the Web for quite sometime now, so please >judge me with some clemency. > >I am also an IgAN sufferer, a condition that has been officially confirmed >at the beginning of last month, although my neph and I knew all along that >I had it because of all the common symptoms that you all know about. > >It all started about fifteen or sixteen years ago when a routine urinalysis >showed traces of blood (microhematuria) and protein in my urine. I was >worried a lot because my mind went to a tumor or something equally serious. >My GP referred me then to a urologist who carried out all the necessary >tests to scrutinize for cancer, including a cystoscopy -exammination of the >bladder through the urethra! :-( Fortunately, all those tests proved >negative and I was greatly relieved, albeit not completely. > >Some deep worry remained with me constantly for in all deliberate urine >labs that I did hencefoth, the symptoms of microhematuria and >microproteinuria were always there. But my urologist never actually >referred me officially to a nephrologist back then and for another five >years or so I did nothing about it, although I was subconsciously thinking >that something was wrong with me. During all those years and even before my >symptoms were officially observed, I also had some mild hypertension which >I completely ignored, and so did my GP and urologist as a matter of fact. >In retrospect, these symptoms must have been there all along, perhaps for >more than 20 years (now I am 45), albeit unobserved. > >It was after an unexpected spree of heavy visible hematuria -which scared >me to death-during an upper respiratory infection, that I rushed to the >outpatient clinic of my local hospital. The GP there noticed immediately my >high blood pressure and after carrying out the necessary lab tests, which >showed no urinary tract infection, and listening to my story, begun >suspecting some kind of glomerulonephritis. In the meantime, the >macrohematuria was over after a couple of days but as my blood pressure >remained above normal she prescribed atenolol (a beta blocker >anti-hypertensive), which soon kept my bp at bay. > >I continued to be seeing her for a couple of years, being on atenolol and >doing routine blood and urine lab tests -everything being normal except >always for some blood and protein in the urine. But she never ordered a 24 >hour urine protein and creatinine clearance test, although once she >referred me for an ultra sound scan and a renogram (in the early '90s I >think), things that proved to be normal back then. The micro-symptoms >though continued insidiously and persistently, fortunately without >worsening, although a couple more times I showed again visible >macrohematuria, whence the gp decided at last to refer me to the >nephrologist of the hospital -it was around 1996 I think. > >The neph repeated all the necessary lab tests, listened to my story and >quickly suspected Berger's disease. Rather curiously he kept me on atenolol >for my high bp for a couple more years -the drug did its job fine on me >lowering my bp within normal range, although it often lowered also my pulse >rate just below 60. Then, suddenly he changed me to Atacand, an angiotensin >II receptor inhibitor which was also very fine on me, with no observable >side effects. > >In the meantime my serum creatinine started rising slightly above normal >and my urine became very foamy as my proteinuria started to increase. A new >ultra sound scan now showed some kidney damage and also a cyst that had >appeared in my left kidney (the neph said that this has nothing to do with >my IgAN). > >After finding out the exact name and description of my condition, I did a >lot of my own research on the Internet and learned a lot about it -in fact >much more than my neph was willing to tell me. It was on the Internet that >I found about the possible benefits of fish oil and vitamin E and also >about the role of ACE inhibitors in lowering proteinuria as well as >hypertension. I finally decided on a kidney biopsy at the beginning of last >July, which confirmed my IgAN and upon my insistence the neph prescribed >enalapril (5mg twice a day), which I started since the 1st of August, >giving up on Atacand. The effects of this new drug for me remain to be seen >as yet. > >My secr just before taking the enalapril was around 1.5 mg/dl, I had a >cr.clear. of about 77 and proteinuria around 1.5gr/24hr. All other lab >parameters seem to be normal so far, except for my blood urate which is >elevated too, for quite some years now -between 7 and 8 mg/dl. Besides >enalapril I now also take fish oil (5-6 grams per day), vitamin A,B and E >supplements and also allopurinol for my uric acid -which seems to do a good >job in keeping it at bay. > >This is my story folks. Sorry for taking this long. I won't be bothering >you with such long messages again. It' s been very nice meeting you. >Farewell, good health to all and best wishes. > >Reagards, >Dan. > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2001 Report Share Posted August 13, 2001 Hi Dan Ditto Pierre and ’s comments. Welcome to the Group and thank you for sharing your personal story with us. Very well written and informative. I hope you decide to pop and let us know how you are doing from time to time. Incidentally I was pleased to note that you are from Cyprus. My husband and I are coming to Cyprus in December for a week’s holiday. We are staying in Paphos. Are you familiar with Paphos, if so would love to know something about the place. Also what sort of temperatures can we expect in December in Cyprus? Sort of hoping it is up in the late 60’s early 70’s!!!! Any case it has to be warmer than the UK in December LOL!!!!! Once again nice to hear from you. Best wishes -----Original Message----- From: Pierre Sent: 13 August 2001 21:25 To: iga-nephropathy Subject: Re: Dan's story Hi Dan. Let me echo 's sentiments in welcoming you to the group. That was a very complete and interesting description of your IgAN story. Seems like it might be a good candidate for posting in our " Personal Stories " folder. I'm 48, and your story has many similarities with mine, although I have never had visible blood in the urine that I know of. Never been to Cyprus, but I'm familiar with it. I served with many people in the army who had been there as part of the Canadian Army peacekeeping troops that used to rotate there. From what I've heard, it's quite a beautiful place. Pierre Canada ----- Original Message ----- From: Boatrite To: iga-nephropathy Sent: Monday, August 13, 2001 3:46 PM Subject: Re: Dan's story Hey Dan, Where ya' goin'? There's no need to leave. As always, everyone is quite welcome in the group and I personally would appreciate it if you stayed. I love the international aspect of this group. It really makes me feel as though I am not alone with this strange and moody disease. So if you are inclined, I can only imagine that the group would benefit from your input (no matter how intermitten it may be). I know I'm not that active with posting my own info and thoughts to the group but I read every day and I pray for everyone. As a matter of fact, I'll offer an olive branch of sorts. To unsubscribe from this group, send an email to: iga-nephropathy-unsubscribeegroups Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Hey Connie, I may look into that tens machine too. I'll talk about it with my doctor tomorrow. I have swelling too but since I have had the fever it hasn't been too bad. Mainly just in my hands and feet. The doc is having me come in tomorrow for more tests. This time it is Lupus, viral meningitis, and several other viral infections like hepititis that could have gotten a hold of me. Also, I have a lump under my left arm that he wants to check out. I have had it for years but it seems that it may not have effected me until now. Some kind of lymphnode disease...how knows at this point. I tell you what. I'm the worse person to be sick like this. I hate needles, I'm the worst to stick and it seems that is all I'm gong to be seeing for awhile. Pray for the nurse who'll be sticking me tomorrow. Last time the nurse cried b/c she made me cry (it took her a few times to get a vein and it hurt pretty bad with her digging in my hand.) Ya' ever get the feeling you can't win for losing? But through all this I know I am blessed. Truly, "Blessed are we who can laugh at ourselves for we shall never cease to be amused." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Hi I am sorry to read that you are still going through the mill. I know it is very easy for us to say when we are not going through the trials you are, but I find it much easier if I can remain focused, on anything else but how I am feeling, my trick is gardening and the gym, and I have to be bed ridden before I let the pain or anything else stop me from doing this, and believe me, when I was going through what you are last year, I too felt like giving up. I think it is important that you get a team of medics behind you, who will listen, and take positive steps to get to the bottom of your problems, and above all a team you can trust. Again not easy in the medical minefield, but you have the right to the best possible advice, and not to be patted on the head, and sent away with pain killers!!!! A tip for the needles, I have a friend who hates them, goes positively green at the gills, Funnily enough though, she recently stayed with me and had a tattoo done on her back, and was absolutely fine with it, now those are needles and a half!!!! I guess the fact she couldn’t see anything is the clue here eh!!!! Good luck for tomorrow, and please if you want to let us know how you are getting on. Best wishes -----Original Message----- From: Boatrite Sent: 15 August 2001 16:31 To: iga-nephropathy Subject: Re: Dan's story Hey Connie, I may look into that tens machine too. I'll talk about it with my doctor tomorrow. I have swelling too but since I have had the fever it hasn't been too bad. Mainly just in my hands and feet. The doc is having me come in tomorrow for more tests. This time it is Lupus, viral meningitis, and several other viral infections like hepititis that could have gotten a hold of me. Also, I have a lump under my left arm that he wants to check out. I have had it for years but it seems that it may not have effected me until now. Some kind of lymphnode disease...how knows at this point. I tell you what. I'm the worse person to be sick like this. I hate needles, I'm the worst to stick and it seems that is all I'm gong to be seeing for awhile. Pray for the nurse who'll be sticking me tomorrow. Last time the nurse cried b/c she made me cry (it took her a few times to get a vein and it hurt pretty bad with her digging in my hand.) Ya' ever get the feeling you can't win for losing? But through all this I know I am blessed. Truly, " Blessed are we who can laugh at ourselves for we shall never cease to be amused. " Quote Link to comment Share on other sites More sharing options...
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