Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 Hello cat, I'm so sorry that you are having all these medical problems. You found a great group for support though. I saw that you were questioning about headaches and fatigue. I have had a lot of fatigue from the Igan. Mine seems to get worse in the winter though, most probably from fighting off colds or bronchitis and the gloomy weather. I had my protein spill decrease about 60% a couple months ago. Before i found out that I had more energy. I couldn't figure it out until I went to the neph and found out everything had improved. The headaches may be that from high blood pressure. I briefly stopped my BP med and had really bad headaches for a week straight and I never get them, so it may be that your BP is high enough to give you headaches. You should probably call your doctor and ask him about the headaches, because even at 140 you are still border line hypertensive. I was only at 146/90 when I was started on ramipril. I hope that everything gets under control and the headaches subside. Welcome again! Jill H little_bird_cat little_bird_cat@...> wrote: Hi , Thank you for the welcome to the group and for your help. At the advice of my doctor I have a bp machine at home in which I check my pressure here and there. It's usually around the 140/90 mark which is higher than my doctor would like (he's recommended 110/70) but from what I've seen and heard about Bp, my number although above the norm is certainly low compared to what some people out there are walking around with! This whole glucose thing is new. Recent tests have showed an increase in my blood glucose level but it's always been within the normal range, it was just this month that the number jumped over the normal range so if it's still high in 6 months then I'll be started on medicine...by then I hope to have an understanding of diabetes as I have no clue now. I wanted to ask, I find myself tiring more easily these days...could this be related to the kidney problems or would I have no symptoms this early on? I also get headaches, pretty much everyday. Cat ) > > Hi Cat, > > A very warm welcome to the group. Pierre has already answered your > questions about glomerulonephritis and IgAN, but I just wanted to welcome you too. > > Your labs look very good and obviously the goal is to keep you stable where > you are. Please do keep a very close eye on the glucose and/or A1C levels > because diabetes all by itself is a risk factor for kidney failure. > > The other thing that is very important is keeping your blood pressure at a > good level. Once you are diagnosed it is important to be monitored regularly > to keep abreast of any changes. With your levels, that may only be once or > perhaps twice a year, but I just want to make sure your glucose and BP is > checked frequently so you can avoid other risk factors. > > Welcome again! > > > > In a message dated 7/26/2005 9:50:16 A.M. Pacific Daylight Time, > little_bird_cat@y... writes: > > Hi to all that are a part of this group. > > I was diagnosed with IgAN and have also heard the term focal > glomerulonephritis used, are these two diseases one in the same? > > I'm just beginning to learn about this disease, it's impact on daily life > and the course it takes throughout the years. > > My recent labs show 300 proteinuria, large amounts of blood in urine, 65 > serum creatinine, creatinine clearance 2.37. > > I currently am on blood pressure meds, stanin and diuretic. My doctor told > me that my blood glucose numbers are leaning towards diabetes so perhaps > after my next appointment I'll have whatever medication is used to control > diabetes added to the daily mix. > > Do these numbers sound like what others are experiencing? > > Cat > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 Hi Jill, How long have you been dealing with IgAN? I've always been an energetic individual who could go non-stop on 5-6 hours of sleep...these days I find myself getting exhausted by mid afternoon and with 8+ hours of sleep nightly. I haven't mentioned anything to my Nephrologist as I didn't want to come across as being a whimp. I thought I'd ask here to see if others experience fatigue and at what level of disease did it affect them. My headaches unfortunately have been with me longer and I've taken measures to rule out some other things with no avail. I didn't consider the BP aspect because I didn't consider my borderline hypertension to be that much of an influence. I was started on Altace a few years back but the side effect of a cough ordered my doctor to change my med to Teveten, in which I'm currently on 800mg/day. As a side note, my husband has had borderline BP for years now and the doctor keeps telling him to change his diet and exercise more...none of these have helped. I finally got on his case about it and when he went to the doctors his reading was high but instead of doing something then, the doctor told him to come back another day that week to see what his reading was. Perhaps I was started on meds so quickly because of the kidney problems or maybe it's a case of different doctors have different criteria before they start something. Either way, maybe an increase in the BP med will help with the headaches, as my Nephrologist wants my BP at 110/70 and I haven't seen that number in quite sometime. Thanks for your insight, Cat ) > > > > Hi Cat, > > > > A very warm welcome to the group. Pierre has already answered > your > > questions about glomerulonephritis and IgAN, but I just wanted to > welcome you too. > > > > Your labs look very good and obviously the goal is to keep you > stable where > > you are. Please do keep a very close eye on the glucose and/or A1C > levels > > because diabetes all by itself is a risk factor for kidney failure. > > > > The other thing that is very important is keeping your blood > pressure at a > > good level. Once you are diagnosed it is important to be > monitored regularly > > to keep abreast of any changes. With your levels, that may only > be once or > > perhaps twice a year, but I just want to make sure your glucose > and BP is > > checked frequently so you can avoid other risk factors. > > > > Welcome again! > > > > > > > > In a message dated 7/26/2005 9:50:16 A.M. Pacific Daylight Time, > > little_bird_cat@y... writes: > > > > Hi to all that are a part of this group. > > > > I was diagnosed with IgAN and have also heard the term focal > > glomerulonephritis used, are these two diseases one in the same? > > > > I'm just beginning to learn about this disease, it's impact on > daily life > > and the course it takes throughout the years. > > > > My recent labs show 300 proteinuria, large amounts of blood in > urine, 65 > > serum creatinine, creatinine clearance 2.37. > > > > I currently am on blood pressure meds, stanin and diuretic. My > doctor told > > me that my blood glucose numbers are leaning towards diabetes so > perhaps > > after my next appointment I'll have whatever medication is used to > control > > diabetes added to the daily mix. > > > > Do these numbers sound like what others are experiencing? > > > > Cat > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 Cat, I first had blood in my urine at the age of 19 (10 years ago). I was in a minor car accident when i was in Boston visiting a friend and the doctor found blood in my urine. That was the beginning of the human guinea pig life. I was put through a lot of testing and after awhile that just kept giving me antiobotics for a UTI eventhough I never had any bacteria. I guess he thought that maybe it would help. I think my protein started showing up in my urine at 23 or so. It slowly crept up. My urologist finally sent me to a nephrologist when I ended up at the ER with totally black urine, large amounts of protein. At the time i had a temp of 103.7 . Looking at the labs now and understanding them, I was at about 47% function and the advice from the ER doctor and nurse " you don't have an infection... I think that you should get an AIDS test. I was finally diagnosed with Igan by biopsy in October 2001. It was a long road because I have other things wrong with me. A painful bladder and uteran disease and other more minor things. My whole urinary track from begining to end is a mess. I always joke to my mom that I grew up near a nuclear waste site since i have so many things wrong while everyone else in my family is completely heathy. Sorry that was so long. You will find that about 70% of the people in this group battle with fatigue. It is the hardest part for me to deal with this disease. It doesn't make life fun when you are always in pain and feel like you haven't slept in weeks! Do you know how much protein you are spilling? When mine was at it's highest it was only about 1 gram. I was so tired all the time. Now it's about 2mg and I have so much more energy. I hope that you can get your energy back! With your husband. Sometimes people have " white coat hypertension " where their blood pressure rise when at the doctor's. Maybe he is waiting to see if it different when he comes in again. Hope everything works out! Take care of yourself and your husband! JillH little_bird_cat little_bird_cat@...> wrote: Hi Jill, How long have you been dealing with IgAN? I've always been an energetic individual who could go non-stop on 5-6 hours of sleep...these days I find myself getting exhausted by mid afternoon and with 8+ hours of sleep nightly. I haven't mentioned anything to my Nephrologist as I didn't want to come across as being a whimp. I thought I'd ask here to see if others experience fatigue and at what level of disease did it affect them. My headaches unfortunately have been with me longer and I've taken measures to rule out some other things with no avail. I didn't consider the BP aspect because I didn't consider my borderline hypertension to be that much of an influence. I was started on Altace a few years back but the side effect of a cough ordered my doctor to change my med to Teveten, in which I'm currently on 800mg/day. As a side note, my husband has had borderline BP for years now and the doctor keeps telling him to change his diet and exercise more...none of these have helped. I finally got on his case about it and when he went to the doctors his reading was high but instead of doing something then, the doctor told him to come back another day that week to see what his reading was. Perhaps I was started on meds so quickly because of the kidney problems or maybe it's a case of different doctors have different criteria before they start something. Either way, maybe an increase in the BP med will help with the headaches, as my Nephrologist wants my BP at 110/70 and I haven't seen that number in quite sometime. Thanks for your insight, Cat ) > > > > Hi Cat, > > > > A very warm welcome to the group. Pierre has already answered > your > > questions about glomerulonephritis and IgAN, but I just wanted to > welcome you too. > > > > Your labs look very good and obviously the goal is to keep you > stable where > > you are. Please do keep a very close eye on the glucose and/or A1C > levels > > because diabetes all by itself is a risk factor for kidney failure. > > > > The other thing that is very important is keeping your blood > pressure at a > > good level. Once you are diagnosed it is important to be > monitored regularly > > to keep abreast of any changes. With your levels, that may only > be once or > > perhaps twice a year, but I just want to make sure your glucose > and BP is > > checked frequently so you can avoid other risk factors. > > > > Welcome again! > > > > > > > > In a message dated 7/26/2005 9:50:16 A.M. Pacific Daylight Time, > > little_bird_cat@y... writes: > > > > Hi to all that are a part of this group. > > > > I was diagnosed with IgAN and have also heard the term focal > > glomerulonephritis used, are these two diseases one in the same? > > > > I'm just beginning to learn about this disease, it's impact on > daily life > > and the course it takes throughout the years. > > > > My recent labs show 300 proteinuria, large amounts of blood in > urine, 65 > > serum creatinine, creatinine clearance 2.37. > > > > I currently am on blood pressure meds, stanin and diuretic. My > doctor told > > me that my blood glucose numbers are leaning towards diabetes so > perhaps > > after my next appointment I'll have whatever medication is used to > control > > diabetes added to the daily mix. > > > > Do these numbers sound like what others are experiencing? > > > > Cat > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2005 Report Share Posted July 27, 2005 Hi Jill... I don't mind a long story...the more info the better, I say. My hubby often interrupts me during 'a speech' and asks what my point is...ha ha. :op Details are my life, I just function better knowing what's going on and when, so feel free to talk on. Anyways...I'm in the process of collecting past lab work as it appears the blood in my urine has been with me for over 10 years (I've found so far). The protein started roughly after I gave birth to my daughter and I never asked what the values were because at the time I didn't know anything was wrong. It wasn't till all these other things like hypertension, crazy triglyceride increase and swelling did I get referred to a Nephrologist. He assures me that everything is good and stable so I'm just in the monitoring stage. I believe my protein is at 3+...if that doesn't make sense, let me know as I'm still trying to keep all these things straight. I wish medicine was more of a sure thing and less invasive but it's not, so I'm hoping to connect with others on this site so that when something doesn't quite feel normal I can ask a question and get a few opinions before taking them up with my doctor. I hope to return to work once my little one goes to school but days like this past week have been making me wonder if I'll be able to because I tire so easily and it doesn't seem like I'm very far along in this disease. Cat > > > > > > Hi Cat, > > > > > > A very warm welcome to the group. Pierre has already answered > > your > > > questions about glomerulonephritis and IgAN, but I just wanted to > > welcome you too. > > > > > > Your labs look very good and obviously the goal is to keep you > > stable where > > > you are. Please do keep a very close eye on the glucose and/or > A1C > > levels > > > because diabetes all by itself is a risk factor for kidney > failure. > > > > > > The other thing that is very important is keeping your blood > > pressure at a > > > good level. Once you are diagnosed it is important to be > > monitored regularly > > > to keep abreast of any changes. With your levels, that may only > > be once or > > > perhaps twice a year, but I just want to make sure your glucose > > and BP is > > > checked frequently so you can avoid other risk factors. > > > > > > Welcome again! > > > > > > > > > > > > In a message dated 7/26/2005 9:50:16 A.M. Pacific Daylight Time, > > > little_bird_cat@y... writes: > > > > > > Hi to all that are a part of this group. > > > > > > I was diagnosed with IgAN and have also heard the term focal > > > glomerulonephritis used, are these two diseases one in the same? > > > > > > I'm just beginning to learn about this disease, it's impact on > > daily life > > > and the course it takes throughout the years. > > > > > > My recent labs show 300 proteinuria, large amounts of blood in > > urine, 65 > > > serum creatinine, creatinine clearance 2.37. > > > > > > I currently am on blood pressure meds, stanin and diuretic. My > > doctor told > > > me that my blood glucose numbers are leaning towards diabetes so > > perhaps > > > after my next appointment I'll have whatever medication is used > to > > control > > > diabetes added to the daily mix. > > > > > > Do these numbers sound like what others are experiencing? > > > > > > Cat > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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