Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 Hi Greg, It is good that you have a Nephrologist, but the goal is to keep you from reaching ESRD. Really the standard treatment for IgAN is Ace Inhibitors, and some Nephrologists encourage fish oil. It is important to keep your blood pressure low, and keep an eye on your creatinine and electrolyte levels as well as protein levels. As long as your Nephrologist knows enough about standard treatment for IgAN, you may not need to find another doctor. There are a couple of our members who have tried the gluten free diet, but I am not one of them, so I can't offer you any advise on that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 Hi Greg, Yes, I certainly do understand how alone you can feel. This group is really a gift from God to many of us, a place where others know exactly what we go through not only physically, but also emotionally. It does sound like you are on the standard treatment with BP meds, cholesterol meds (MANY of us also have high cholesterol that goes with this) and quite a few on fish oil. A low protein diet is also often recommended. Your course of treatment, minus the fish oil, is the same I was on since the mid 90's, and I held steady on that until 2000 at which time I needed to add Epogen for anemia, and also had to add two more BP meds due to BP being harder to control as often happens in more advanced cases of kidney disease. The things that seem to help me are getting enough rest, being very careful about my diet ( I also have to really watch potassium) and making sure my BP stays in control. You are doing the right things, and it does sound like your Nephrologist is on top of things. I pray you can be one of the fortunate ones to escape ESRD, but even if you do reach that stage, we are here to walk with you through that as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 Thanks Cy, I'm planning on moving to Colorado Springs. Good info Thanks, Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 Hi , Welcome to this site. I'm sorry you have reason to be here, but very glad you found your way here. I think you already figure out how this works. Jumping in with dialog or responding to someone else is generally the best way! Is your current doctor a nephrologist? Kidney stuff is one area where specialists are definitely merited. Hopefully someone who is more familiar than I with the Denver area can chime it. However, I've heard great stuff about the University of Colorado Health Sciences School in Denver. Here's a link to their physican's directory for renal disease: http://upi.uchsc.edu/prp_med_renal.html Hope this helps, Cy Good IGA doctor > Hello, > > I have just been diagnosed with IGA Nephropathy. I am also new to this group, so I'm not sure how this all works, but I figured I'd just start some dialog and figure it out. > > I live in Denver, and am looking for a doctor that knows a lot about IGA. My current doctor is great, but he has treated very few patients with my disease. I am wondering if someone can turn me on to a doctor that has more experience with this. I just want to make sure that I'm receiving the best care possible. > > Any help or feedback is appreciated. > > Thank you, > > Greg > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 My doctor is Mark Dillingham. He's a Nephrologist. He performs a lot of transplants. He's a great guy. It just seems that he doesn't know a lot about IGA. He has only treated a few patients with this disease. He recently asked me to try a gluten free diet. 3 to 6 month trial. I feel like a lab rat. Re: Good IGA doctor Hi , Welcome to this site. I'm sorry you have reason to be here, but very glad you found your way here. I think you already figure out how this works. Jumping in with dialog or responding to someone else is generally the best way! Is your current doctor a nephrologist? Kidney stuff is one area where specialists are definitely merited. Hopefully someone who is more familiar than I with the Denver area can chime it. However, I've heard great stuff about the University of Colorado Health Sciences School in Denver. Here's a link to their physican's directory for renal disease: http://upi.uchsc.edu/prp_med_renal.html Hope this helps, Cy Good IGA doctor > Hello, > > I have just been diagnosed with IGA Nephropathy. I am also new to this group, so I'm not sure how this all works, but I figured I'd just start some dialog and figure it out. > > I live in Denver, and am looking for a doctor that knows a lot about IGA. My current doctor is great, but he has treated very few patients with my disease. I am wondering if someone can turn me on to a doctor that has more experience with this. I just want to make sure that I'm receiving the best care possible. > > Any help or feedback is appreciated. > > Thank you, > > Greg > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 , Thank you so much for the feedback. You have no idea, (or wait a second I guess you do) how alone I have felt. You all are the first people that I have spoken to that know what I'm going through, other than my doctor. I am being treated for high blood pressure (Altace), and cholesterol (Lipitor), and I'm taking fish oil pills (Puritan's Pride). Supposedly the fish oil pills are the best you can get. I also have been on the standard low-protein diet. But recently he suggested that I try the gluten free diet. Has anyone out there tried this ? Has anyone been trying any other treatments ? It seems that there is so little that can be done. I am 34 years old, so I hope I won't reach ESRD for a long time, but my doctor explained to me that I fall into the category of " not so good " prognosis. This was based on my biopsy I guess. I obviously am trying to educate myself as much as possible so that I can delay the inevitable. I suppose everyone in this group has the same goals. Any advice is appreciated. Greg Re: Good IGA doctor Hi Greg, It is good that you have a Nephrologist, but the goal is to keep you from reaching ESRD. Really the standard treatment for IgAN is Ace Inhibitors, and some Nephrologists encourage fish oil. It is important to keep your blood pressure low, and keep an eye on your creatinine and electrolyte levels as well as protein levels. As long as your Nephrologist knows enough about standard treatment for IgAN, you may not need to find another doctor. There are a couple of our members who have tried the gluten free diet, but I am not one of them, so I can't offer you any advise on that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 is absolutely right about case load. There aren't many nephrologists out there. I asked a friend in medical school who was trying to figure out what to specialize in what type of people become nephrologists. The one word answer was " Saints " . Unlike say, cardiology, there's not many procedures (other than biopsies) to do that bring in an " enhanced income " . There seems to be a bit of a vicious cycle happening in that docs in the field are very overworked so the area is progressively less attractive. I second 's comments on the importance of voting in California. There can't be a democratic process unless people participate in the process. VOTE! Cy Re: Good IGA doctor > Hi Greg, > > I wanted to add my welcome to Cy's. Please do feel free to jump in with any > questions or comments at any time. > > The other suggestion I have for locating a Nephrologist is just calling them > and inquiring as to how many IgAN patients they have in their case load. Mine > has over 100 patients with IgAN and is very on top of the latest literature, > but is located in CA so he won't do you much good. > > As a side note, I hope all those who live in California will get out and vote > regardless of how you vote, each vote is important and in a tight election, > every vote does count. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 Greg, Welcome to the group. We are a talkative group here so you will get help even if you don't ask for it. I too agree with about finding a doctor for your IGa. Another way that you can go to find one is to call your closest teaching hospital and talk to the nephrology department there. They might know something about IGa or can tell you a good nephrologists who knows about it. What is your creatinine? That give us a handle on where you are in this process. I had the kind of IGa that goes to ESRF. I just had a transplant. There are several people in this group who are on dialysis. Some of the people here have taken immunosuppressant to try slowing down this disease. I think that diet, low blood pressure, and following your doctor's advice is as good as anything that we have found here. I had problems with fish oil, but I understand that there are fish oil tablets that have a covering on them so that they are absorbed in the intestine to keep the fish burps away. Re: Good IGA doctor Hi Greg, It is good that you have a Nephrologist, but the goal is to keep you from reaching ESRD. Really the standard treatment for IgAN is Ace Inhibitors, and some Nephrologists encourage fish oil. It is important to keep your blood pressure low, and keep an eye on your creatinine and electrolyte levels as well as protein levels. As long as your Nephrologist knows enough about standard treatment for IgAN, you may not need to find another doctor. There are a couple of our members who have tried the gluten free diet, but I am not one of them, so I can't offer you any advise on that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 Greg, I¹m in Denver. My son is the one with IgAN. He had a transplant in 2001 and is followed now by the Renal Transplant Clinic at University Hospital. They have been terrific. Prior to the transplant, he saw Dr. Spiegel at University and liked him very much too. No one around here that we are aware of has a lot of experience with IgAN patients, but the nephrologists at University have seen quite a few. The number at the Renal Clinic is . Betsy > Hello, > > I have just been diagnosed with IGA Nephropathy. I am also new to this group, > so I'm not sure how this all works, but I figured I'd just start some dialog > and figure it out. > > I live in Denver, and am looking for a doctor that knows a lot about IGA. My > current doctor is great, but he has treated very few patients with my disease. > I am wondering if someone can turn me on to a doctor that has more experience > with this. I just want to make sure that I'm receiving the best care > possible. > > Any help or feedback is appreciated. > > Thank you, > > Greg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 Glad to hear it was of use! Cy Re: Good IGA doctor > Thanks Cy, > > I'm planning on moving to Colorado Springs. Good info > > Thanks, > > Colleen > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2003 Report Share Posted October 7, 2003 Greg: I too was originally diagnosed with an aggressive form of the disease in December 2000. However, since that time, I have had little additional loss of function -- in fact we are hoping that it stays at this level for some time to come. You mentioned that your doctor has you on the gluten free diet. This sounds like he subscribes to the theory that IGAN is tied to celiac disease. You might want to ask him to do the genetic test for celiac before you spend a full 6 months on that diet. Some people claim that it can help, but myself, the last thing I would need is to change to a gluten free diet when I have so many other things to worry about. They did the genetic test with me, and it came back negative. The most important thing is to keep up with your Blood Pressure medicine. I take 2700 mg of Labetalol, 450 mg of Avapro, and 80 mg of lasix each and every day. I sleep a little more than I used to, and I have to watch my potassium levels, but I don't have to worry about celiac disease. Walt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2003 Report Share Posted October 8, 2003 --- Hi Welcome to the group! I am one of the few people here who are on gluten free diet accordingly to my neph orders. I am 36 years old female with mild IGAN. I live in Poland. Before I started this diet ( in my case it is low antygenic one) I had done genetic tests for celiac disease and the result was negative...but anyway I try to follow my doc orders... I am on this diet for 15 months now. It is not easy but also it's not a big problem as well ... Sorry I am so short this time, but I have just got a cold and don't feel very well. You may try to search for some information about this diet in the messages archive becouse we were discussing it before... But I will of course answer your possible questions later, I don't intend to stay with his cold for a long time !LOL Take care and all the best, Elvira In iga-nephropathy , " Short, " <gregory.short@n...> wrote: > My doctor is Mark Dillingham. He's a Nephrologist. He performs a lot of transplants. He's a great guy. It just seems that he doesn't know a lot about IGA. He has only treated a few patients with this disease. > > He recently asked me to try a gluten free diet. 3 to 6 month trial. I feel like a lab rat. > > > Re: Good IGA doctor > > > Hi , > > Welcome to this site. I'm sorry you have reason to be here, but very glad > you found your way here. I think you already figure out how this works. > Jumping in with dialog or responding to someone else is generally the best > way! > > Is your current doctor a nephrologist? Kidney stuff is one area where > specialists are definitely merited. Hopefully someone who is more familiar > than I with the Denver area can chime it. However, I've heard great stuff > about the University of Colorado Health Sciences School in Denver. Here's a > link to their physican's directory for renal disease: > http://upi.uchsc.edu/prp_med_renal.html > > Hope this helps, > > Cy > > Good IGA doctor > > > > Hello, > > > > I have just been diagnosed with IGA Nephropathy. I am also new to this > group, so I'm not sure how this all works, but I figured I'd just start some > dialog and figure it out. > > > > I live in Denver, and am looking for a doctor that knows a lot about IGA. > My current doctor is great, but he has treated very few patients with my > disease. I am wondering if someone can turn me on to a doctor that has more > experience with this. I just want to make sure that I'm receiving the best > care possible. > > > > Any help or feedback is appreciated. > > > > Thank you, > > > > Greg > > > > > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.