Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hello! I am new here. I was diagnosed last month after a biopsy that I put off for about 8 months. Unfortunately, my biopsy experience was terrible (I had no sedative, felt EVERYTHING during the biopsy, and was offered no pain medication for afterward. I was sent home a few hours later and boy was I in pain at home for a few days!). I have not started any treatments as my neph appt. isn't until next week. I like my neph. a lot - he is an osteopath and I feel compatible with his approach. I get migraines occasionally, too, and I take Excedrin Migraine (aspirin and acetaminophen with caffeine) and it works VERY well if I catch it soon enough. What REALLY helped me with headaches is myofascial release. I am not very new-agey or anything but this particular branch of physical therapy was a Godsend to me. After the therapist released certain overly tight muscles I had significant relief and significantly fewer headaches. It may be something worth exploring for those who want a non-medical approach to headache relief. I am 36, married 4 years to a sweet, wonderful man. We are a family of two, plus a dog and two cats. We tried to have kids for a few years but no luck. Now it looks like with the IgAN diagnosis that it would be very risky anyway. I have always believed in leaving things in God's hands and this is no different. I am glad we were well on the way to accepting and dealing with a childfree lifestyle before this got piled on, though. From what I know my kidney function is " better than normal " - that sounds good, right? and my protein level was around 300 and held at that level for over a year. I don't think I have a lot of symptoms but for years now I have had swelling in my feet (very annoying for someone like me who LOVES cute shoes!), joint pain (they thought I had lupus or rheumatoid arthritis), sinus problems, and I feel I have less energy than other people. Thanks for all the excellent information posted here. It has been very informative and I am glad to " meet " you all. Barbara Re: B. , I don't know why your doctor would tell you to take Advil. I do know that you should definitely go with what your doctor says over anything I would tell you. At diagnosis, Elisabet's protein/creatinine ratio was 6.0, which meant that she was spilling alot of protein. Maybe that's why he said no to those meds. Definitely take your doctor's advice over mine. :-) I'd hate to see you living without Advil if you didn't need to. On the other hand, Amy said no to Advil too ... What do you others think?? So sorry to hear about your headaches, yeah we know the routine. Good luck to you and let me know what you find out, B, Elisabet's mom > Hi , > > I think everything medically has been covered to rule out the cause of my headaches. It was just left at migraines and I was given a prescription. You know the situation, you have to complain a million times before your doctor hears you, then the tests come back fine and you're told it's all in your head...ahhhh yeah, I know, it hurts! > > I kept a journal of when I got headaches, what I was doing, how long they lasted and where the pain was and that didn't help either, it was just passed off as stress, lack of sleep, medication, etc...I'm sure you know the routine. > > I was never told not to take any type of OTC medicines by my nephrologist but then again I haven't been an active participant at my nephrology appointments either because I didn't 'accept' this disease. My regular doctor has actually told me to use Advil or Motrin during the times my sinus infections flare up to see if I can avoid taking an antibiotic, so I had no idea these drugs were a no-no. > > I have used Advil whenever I get a headache and couldn't shake it...2-200mg tablets and sometimes up to 6 a day. I have written down OTC and Advil type medications in my nephrology notebook to ask my nephrologist at the next appointment. Thank you for letting me know this information, I don't know why my one doctor would tell me to take Advil or Motrin when he knows I have kidney disease...maybe because I'm still considered to be in the early stages or does that not matter? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Barbara, Welcome to the group. Sorry for the IGAN diagnosis, but it sounds like you are in good hands and have a great attitude. This group has been a wonderful support to me and I'm sure you will feel the same. Jill > > Hi , > > > > I think everything medically has been covered to rule out the cause > of my headaches. It was just left at migraines and I was given a > prescription. You know the situation, you have to complain a million > times before your doctor hears you, then the tests come back fine and > you're told it's all in your head...ahhhh yeah, I know, it hurts! > > > > I kept a journal of when I got headaches, what I was doing, how long > they lasted and where the pain was and that didn't help either, it was > just passed off as stress, lack of sleep, medication, etc...I'm sure > you know the routine. > > > > I was never told not to take any type of OTC medicines by my > nephrologist but then again I haven't been an active participant at my > nephrology appointments either because I didn't 'accept' this disease. > My regular doctor has actually told me to use Advil or Motrin during > the times my sinus infections flare up to see if I can avoid taking an > antibiotic, so I had no idea these drugs were a no-no. > > > > I have used Advil whenever I get a headache and couldn't shake > it...2-200mg tablets and sometimes up to 6 a day. I have written down > OTC and Advil type medications in my nephrology notebook to ask my > nephrologist at the next appointment. Thank you for letting me know > this information, I don't know why my one doctor would tell me to take > Advil or Motrin when he knows I have kidney disease...maybe because > I'm still considered to be in the early stages or does that not > matter? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi Barbara, Welcome to the email list! I'm sorry your biopsy experience was so awful! Pain management is so easy under these circumstances, it's a shame what you had to go through. Fortunately, your experience is pretty rare. While nobody would exactly call a biopsy a walk in the park, it doesn't have to be painful. Based upon what you have told us, I can't say how far your kidney disease has progressed (if at all! ). Fortunately, for many patients, proteinuria associated with IgAN is relatively mild. Please let us know how your neph visit goes. Cy June051969@... wrote: Hello! I am new here. I was diagnosed last month after a biopsy that I put off for about 8 months. Unfortunately, my biopsy experience was terrible (I had no sedative, felt EVERYTHING during the biopsy, and was offered no pain medication for afterward. I was sent home a few hours later and boy was I in pain at home for a few days!). I have not started any treatments as my neph appt. isn't until next week. I like my neph. a lot - he is an osteopath and I feel compatible with his approach. I get migraines occasionally, too, and I take Excedrin Migraine (aspirin and acetaminophen with caffeine) and it works VERY well if I catch it soon enough. What REALLY helped me with headaches is myofascial release. I am not very new-agey or anything but this particular branch of physical therapy was a Godsend to me. After the therapist released certain overly tight muscles I had significant relief and significantly fewer headaches. It may be something worth exploring for those who want a non-medical approach to headache relief. I am 36, married 4 years to a sweet, wonderful man. We are a family of two, plus a dog and two cats. We tried to have kids for a few years but no luck. Now it looks like with the IgAN diagnosis that it would be very risky anyway. I have always believed in leaving things in God's hands and this is no different. I am glad we were well on the way to accepting and dealing with a childfree lifestyle before this got piled on, though. From what I know my kidney function is " better than normal " - that sounds good, right? and my protein level was around 300 and held at that level for over a year. I don't think I have a lot of symptoms but for years now I have had swelling in my feet (very annoying for someone like me who LOVES cute shoes!), joint pain (they thought I had lupus or rheumatoid arthritis), sinus problems, and I feel I have less energy than other people. Thanks for all the excellent information posted here. It has been very informative and I am glad to " meet " you all. Barbara Re: B. , I don't know why your doctor would tell you to take Advil. I do know that you should definitely go with what your doctor says over anything I would tell you. At diagnosis, Elisabet's protein/creatinine ratio was 6.0, which meant that she was spilling alot of protein. Maybe that's why he said no to those meds. Definitely take your doctor's advice over mine. :-) I'd hate to see you living without Advil if you didn't need to. On the other hand, Amy said no to Advil too ... What do you others think?? So sorry to hear about your headaches, yeah we know the routine. Good luck to you and let me know what you find out, B, Elisabet's mom > Hi , > > I think everything medically has been covered to rule out the cause of my headaches. It was just left at migraines and I was given a prescription. You know the situation, you have to complain a million times before your doctor hears you, then the tests come back fine and you're told it's all in your head...ahhhh yeah, I know, it hurts! > > I kept a journal of when I got headaches, what I was doing, how long they lasted and where the pain was and that didn't help either, it was just passed off as stress, lack of sleep, medication, etc...I'm sure you know the routine. > > I was never told not to take any type of OTC medicines by my nephrologist but then again I haven't been an active participant at my nephrology appointments either because I didn't 'accept' this disease. My regular doctor has actually told me to use Advil or Motrin during the times my sinus infections flare up to see if I can avoid taking an antibiotic, so I had no idea these drugs were a no-no. > > I have used Advil whenever I get a headache and couldn't shake it...2-200mg tablets and sometimes up to 6 a day. I have written down OTC and Advil type medications in my nephrology notebook to ask my nephrologist at the next appointment. Thank you for letting me know this information, I don't know why my one doctor would tell me to take Advil or Motrin when he knows I have kidney disease...maybe because I'm still considered to be in the early stages or does that not matter? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi barbara! good to see u're mail......barbra i have a similar problem.....frequent migraine/headaches with 24hrs protein of 2800mg.Pls. tell more about this physical therapy to control headaches.......i am really down with it...it hinders my work,,i'm not able to do anything unless i take medicines... pls. reply. Thank you. Simran pal June051969@... wrote: Hello! I am new here. I was diagnosed last month after a biopsy that I put off for about 8 months. Unfortunately, my biopsy experience was terrible (I had no sedative, felt EVERYTHING during the biopsy, and was offered no pain medication for afterward. I was sent home a few hours later and boy was I in pain at home for a few days!). I have not started any treatments as my neph appt. isn't until next week. I like my neph. a lot - he is an osteopath and I feel compatible with his approach. I get migraines occasionally, too, and I take Excedrin Migraine (aspirin and acetaminophen with caffeine) and it works VERY well if I catch it soon enough. What REALLY helped me with headaches is myofascial release. I am not very new-agey or anything but this particular branch of physical therapy was a Godsend to me. After the therapist released certain overly tight muscles I had significant relief and significantly fewer headaches. It may be something worth exploring for those who want a non-medical approach to headache relief. I am 36, married 4 years to a sweet, wonderful man. We are a family of two, plus a dog and two cats. We tried to have kids for a few years but no luck. Now it looks like with the IgAN diagnosis that it would be very risky anyway. I have always believed in leaving things in God's hands and this is no different. I am glad we were well on the way to accepting and dealing with a childfree lifestyle before this got piled on, though. From what I know my kidney function is " better than normal " - that sounds good, right? and my protein level was around 300 and held at that level for over a year. I don't think I have a lot of symptoms but for years now I have had swelling in my feet (very annoying for someone like me who LOVES cute shoes!), joint pain (they thought I had lupus or rheumatoid arthritis), sinus problems, and I feel I have less energy than other people. Thanks for all the excellent information posted here. It has been very informative and I am glad to " meet " you all. Barbara Re: B. , I don't know why your doctor would tell you to take Advil. I do know that you should definitely go with what your doctor says over anything I would tell you. At diagnosis, Elisabet's protein/creatinine ratio was 6.0, which meant that she was spilling alot of protein. Maybe that's why he said no to those meds. Definitely take your doctor's advice over mine. :-) I'd hate to see you living without Advil if you didn't need to. On the other hand, Amy said no to Advil too ... What do you others think?? So sorry to hear about your headaches, yeah we know the routine. Good luck to you and let me know what you find out, B, Elisabet's mom > Hi , > > I think everything medically has been covered to rule out the cause of my headaches. It was just left at migraines and I was given a prescription. You know the situation, you have to complain a million times before your doctor hears you, then the tests come back fine and you're told it's all in your head...ahhhh yeah, I know, it hurts! > > I kept a journal of when I got headaches, what I was doing, how long they lasted and where the pain was and that didn't help either, it was just passed off as stress, lack of sleep, medication, etc...I'm sure you know the routine. > > I was never told not to take any type of OTC medicines by my nephrologist but then again I haven't been an active participant at my nephrology appointments either because I didn't 'accept' this disease. My regular doctor has actually told me to use Advil or Motrin during the times my sinus infections flare up to see if I can avoid taking an antibiotic, so I had no idea these drugs were a no-no. > > I have used Advil whenever I get a headache and couldn't shake it...2-200mg tablets and sometimes up to 6 a day. I have written down OTC and Advil type medications in my nephrology notebook to ask my nephrologist at the next appointment. Thank you for letting me know this information, I don't know why my one doctor would tell me to take Advil or Motrin when he knows I have kidney disease...maybe because I'm still considered to be in the early stages or does that not matter? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi Barbara: Welcome to our group - your name is one of my fav's (my sister Barb was my kidney donor). It sounds as if you're doing OK kidney-wise, and that is good. My advice is read up on the site www.igan.ca so you can be well armed for your neph visit - but don't try to take it all in at once. From this group you'll see different approachs to treatment, and varied results. The only thing certain right now is there is no one way to treat this. As for the biopsy, I was in your shoes (not the cute little ones). Whatever they gave me for the pain just did not work. But on the plus side, it was worse than my transplant. June051969@... wrote: Hello! I am new here. I was diagnosed last month after a biopsy that I put off for about 8 months. Unfortunately, my biopsy experience was terrible (I had no sedative, felt EVERYTHING during the biopsy, and was offered no pain medication for afterward. I was sent home a few hours later and boy was I in pain at home for a few days!). I have not started any treatments as my neph appt. isn't until next week. I like my neph. a lot - he is an osteopath and I feel compatible with his approach. I get migraines occasionally, too, and I take Excedrin Migraine (aspirin and acetaminophen with caffeine) and it works VERY well if I catch it soon enough. What REALLY helped me with headaches is myofascial release. I am not very new-agey or anything but this particular branch of physical therapy was a Godsend to me. After the therapist released certain overly tight muscles I had significant relief and significantly fewer headaches. It may be something worth exploring for those who want a non-medical approach to headache relief. I am 36, married 4 years to a sweet, wonderful man. We are a family of two, plus a dog and two cats. We tried to have kids for a few years but no luck. Now it looks like with the IgAN diagnosis that it would be very risky anyway. I have always believed in leaving things in God's hands and this is no different. I am glad we were well on the way to accepting and dealing with a childfree lifestyle before this got piled on, though. From what I know my kidney function is " better than normal " - that sounds good, right? and my protein level was around 300 and held at that level for over a year. I don't think I have a lot of symptoms but for years now I have had swelling in my feet (very annoying for someone like me who LOVES cute shoes!), joint pain (they thought I had lupus or rheumatoid arthritis), sinus problems, and I feel I have less energy than other people. Thanks for all the excellent information posted here. It has been very informative and I am glad to " meet " you all. Barbara Re: B. , I don't know why your doctor would tell you to take Advil. I do know that you should definitely go with what your doctor says over anything I would tell you. At diagnosis, Elisabet's protein/creatinine ratio was 6.0, which meant that she was spilling alot of protein. Maybe that's why he said no to those meds. Definitely take your doctor's advice over mine. :-) I'd hate to see you living without Advil if you didn't need to. On the other hand, Amy said no to Advil too ... What do you others think?? So sorry to hear about your headaches, yeah we know the routine. Good luck to you and let me know what you find out, B, Elisabet's mom > Hi , > > I think everything medically has been covered to rule out the cause of my headaches. It was just left at migraines and I was given a prescription. You know the situation, you have to complain a million times before your doctor hears you, then the tests come back fine and you're told it's all in your head...ahhhh yeah, I know, it hurts! > > I kept a journal of when I got headaches, what I was doing, how long they lasted and where the pain was and that didn't help either, it was just passed off as stress, lack of sleep, medication, etc...I'm sure you know the routine. > > I was never told not to take any type of OTC medicines by my nephrologist but then again I haven't been an active participant at my nephrology appointments either because I didn't 'accept' this disease. My regular doctor has actually told me to use Advil or Motrin during the times my sinus infections flare up to see if I can avoid taking an antibiotic, so I had no idea these drugs were a no-no. > > I have used Advil whenever I get a headache and couldn't shake it...2-200mg tablets and sometimes up to 6 a day. I have written down OTC and Advil type medications in my nephrology notebook to ask my nephrologist at the next appointment. Thank you for letting me know this information, I don't know why my one doctor would tell me to take Advil or Motrin when he knows I have kidney disease...maybe because I'm still considered to be in the early stages or does that not matter? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Hi Barbara, A very warm welcome to the group! I am sorry you needed to find your way here. What an awful experience with your biopsy. I am so sorry they did not give you any pain management. The good news is that your function is better than normal. You could not ask for better news than that. I am glad you have such a wonderful husband to support you through this. Amy, your husband may have some competition for husband of the year award this year :-) The edema sometimes comes with kidney disease, especially if you are spilling protein and the lack of energy, well, that is pretty common her unfortunately. We are glad to meet you as well. Welcome again, In a message dated 8/10/2005 7:36:58 A.M. Pacific Daylight Time, June051969@... writes: Hello! I am new here. I was diagnosed last month after a biopsy that I put off for about 8 months. Unfortunately, my biopsy experience was terr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2005 Report Share Posted August 10, 2005 Welcome to the group, Barbara. You can't really have kidney function that is " better than normal " . What is normal is what is normal for you. But, it's common for people to have a creatinine clearance (or glomerular filtration rate) which measures as better than 100% (like 120 or 130%). This is where the idea of having better than normal kidney function comes in. Basically, we all are born with way more kidney function than we need, so, people with normal kidney function usually measure better than 100%. By the way, this is also the reason why a person will often have lost 50% of his/her kidney function before it's noticed. Pierre Hello all! > Hello! > > I am new here. I was diagnosed last month after a biopsy that I put off > for about 8 months. Unfortunately, my biopsy experience was terrible (I > had no sedative, felt EVERYTHING during the biopsy, and was offered no > pain medication for afterward. I was sent home a few hours later and boy > was I in pain at home for a few days!). > > I have not started any treatments as my neph appt. isn't until next week. > I like my neph. a lot - he is an osteopath and I feel compatible with his > approach. > > I get migraines occasionally, too, and I take Excedrin Migraine (aspirin > and acetaminophen with caffeine) and it works VERY well if I catch it soon > enough. What REALLY helped me with headaches is myofascial release. I am > not very new-agey or anything but this particular branch of physical > therapy was a Godsend to me. After the therapist released certain overly > tight muscles I had significant relief and significantly fewer headaches. > It may be something worth exploring for those who want a non-medical > approach to headache relief. > > I am 36, married 4 years to a sweet, wonderful man. We are a family of > two, plus a dog and two cats. We tried to have kids for a few years but no > luck. Now it looks like with the IgAN diagnosis that it would be very > risky anyway. I have always believed in leaving things in God's hands and > this is no different. I am glad we were well on the way to accepting and > dealing with a childfree lifestyle before this got piled on, though. > > From what I know my kidney function is " better than normal " - that sounds > good, right? and my protein level was around 300 and held at that level > for over a year. I don't think I have a lot of symptoms but for years now > I have had swelling in my feet (very annoying for someone like me who > LOVES cute shoes!), joint pain (they thought I had lupus or rheumatoid > arthritis), sinus problems, and I feel I have less energy than other > people. > > Thanks for all the excellent information posted here. It has been very > informative and I am glad to " meet " you all. > > Barbara > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Part of the " better than normal, " misconception lies with the nephrologists, who often take your measured creatinine clearance, say 47 ml/min and convert to a percentage...and tell you that you have " 47% function. " The 100% function GFR is about 120-140 ml/min, so the approximation that is used, namely that GFR can be directly correlated to that percentage of function, really is just that...an approximation....since, often, your 100% function number will not be known to the nephrologists currently treating you (mine is, as the IgAN was discovered as a result of something else entirely....I was spilling about 300 mg of protein a day and my hematologist caught it, did the electrophoresis, and sent me to the nephs). Bear in mind that your GFR today (or, more correctly, the day you did the jug exercise) can be quite different than right this minute; depends on hydration state, exercise, for very muscular people HOW muscular they are, and the amusing one, athletes who take creatine (which is converted to creatinine in muscle), and lots more. I hope this helps clarify rather than muddy the waters a bit. Bart You can't really have kidney function that is " better than normal " . What is normal is what is normal for you. But, it's common for people to have a creatinine clearance (or glomerular filtration rate) which measures as better than 100% (like 120 or 130%). This is where the idea of having better than normal kidney function comes in. Quote Link to comment Share on other sites More sharing options...
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