| Author | Subject: update on more info |
| april | Posted At 15:11:52 08/24/2002 Hi again. Thank you Beth for the info. I am still trying to find a nephrologist. It is now 6 months later and I not only have not seen a nephrologist but I now have no urologist or primary doctor. They have both left the area. Unfortunately, I live in a small town. I would be very willing to travel anywhere at this point to get some help. I am so tired of not feeling well all the time. I live in Manitoba, Canada. Where can I go?? How do I get in to see a nephrologist. Do I have to be referred? I could really use some advice. Also, lately, I notice that I have been burning myself a lot lately on the stove and not noticing. There seems to be some numbness in my wrists. Is this related to kidney disease? |
| Beth Witten | Re: update on more info (Currently 0 replies) Posted At 12:47:17 08/26/2002 Hi April, I think it is essential that you locate a nephrologist right away to evaluate your kidney function and what treatment can be provided to help you prolong your kidney function and treat symptoms that you're experiencing. The place that I'd start in trying to locate a nephrologist is the Kidney Foundation of Canada. I am not sure what Canadian health coverage requires so far as referral, but I suspect you can find this out from the Kidney Foundation too. You can reach them at: Manitoba Branch 200-55 Donald Street Winnipeg, MB R3C 1L8 Tel.: (204) 989-0800 Fax: (204) 989-0815 info@kidney.mb.ca Apparently Manitoba has the highest number of people with kidney failure in Canada. This has led to the establishment of the Manitoba Provincial Dialysis Program (www.umanitoba.ca/faculties/medicine/units/intmed/sections/neph/clinic.html). According to the information on the site, all forms of treatment for kidney failure are offered in Manitoba. Diseases of the kidney and diseases that can lead to kidney disease can cause nerve problems that affect sensation. This condition is called neuropathy. Diseases that lead to kidney disease that are also associated with neuropathy include diabetes, lupus, and polyarteritis. According to the new National Kidney Foundation's Kidney Disease Outcomes Quality Initiative (K/DOQI) guidelines, people usually don't develop neuropathy right away when they have kidney disease. In most cases, someone has to have severe kidney damage or have had uremia (high toxin levels in the blood) for 6 months or more before it affects his/her nerves. Neuropathy can affect sleep and how well you think and remember things as well as your blood pressure and heart rate. Neuropathy can be evaluated by a nerve conduction velocity study. Reducing the uremic toxins in the body can help neuropathy. |
| april | Re: update on more info (Currently 2 replies) Posted At 14:39:47 09/01/2002 thank you for your response. I will definitely check that out. Somehow I was not surprised to hear that we have the highest rate of kidney failure. With the trouble that I have had even finding a decent doctor to treat me, I'm sure it's even higher! |
| april | Re: update on more info (Currently 0 replies) Posted At 15:23:49 09/16/2002 Guess what? I finally got an appointment with a nephrologist for tomorrow (Sept 17) I am really nervous. Hope I can ask all my questions without chickening out. My husband is coming with me for support. What else should I bring with me? My urologist has left the area and I am wondering if all his records and test results would stay here or go with him. He is the one that did my kidney surgery. I also have diabetes. Should I bring my blood sugar readings for the last few days? Any advice would be appreciated. |
| Beth Witten | Re: update on more info (Currently 0 replies) Posted At 19:06:16 09/17/2002 Hi April, I had computer problems and didn't read your message until today (Sept 17). If you didn't take these with you, you might call the nephrologist and ask if he/she needs to know your blood sugar readings and your medical history, including childhood and adult illnesses (diagnoses, if known), treatments, medications, and surgeries. I'm really happy that you got an appointment with a nephrologist. I'll be anxious to know what he/she told you. Remember, if you find out that you have kidney disease, there are lots of resources to help you -- from educational materials, to staff, to other people who are living with kidney disease every day. Your interest in learning as much as you can should help you do well. Good luck! |
| april | Re: update on more info (Currently 0 replies) Posted At 14:19:17 09/19/2002 Thank you for your reply. I wasn't sure if you would see this so I put it on a new one. Sorry if I confused you. Yes, my appointment was Sept. 17. I did bring my blood monitor with me. He was able to see my last 10 readings. The Dr. was quite interested in my symptoms and in the fact that I had diabetes. He read the referral letter and said that basically we can " write off " the kidney. He also did quite a few tests. I was impressed. I was not aware that you had to have your eyes and feet checked every year if you had diabetes and you were not on medication. He even did a heart trace (EEG?) because I had mentioned that I sometimes get chest pain. He had asked if I had gone to the hospital about this and I said I did the first time it happened, but they told me it was just an anxiety attack. He was not impressed! I don't think he had the test results for the kidney scans. Should I bother now, since he says my creatinine levels are o.k. He did order a test for protein in my urine. |
| Beth Witten | Re: update on more info (Currently 3 replies) Posted At 22:50:56 09/29/2002 Hi April, I don't know what the doctor meant when he said that you can "write off" your kidneys. There are a number of things that can be done to protect the kidney. I'm glad that your doctor ran several tests, including the lab test to measure creatinine in your blood. Even though your creatinine is OK, I would make sure that the doctor has copies of your kidney scans. Creatinine does not rise above normal until about 50% of kidney function is lost. New National Kidney Foundation guidelines recommend that doctors use the results of the blood creatinine test along with such factors as your sex, age, race, and body size to estimate glomerular filtration rate (GFR). This will give an estimate of the percentage of kidney function that you have now. The Life Options web site has information on chronic kidney disease at www.lifeoptions.org/patient/ckdinfo/index.shtml. From this site, you can download an entire packet of CKD materials for free. NKF has a booklet to help people at risk of kidney disease to understand lab and other tests to monitor kidney function, things to do to protect the kidneys, etc. You can download and read "Are You At Increased Risk for Chronic Kidney Disease?" at: www.kidney.org/general/aboutdisease/atriskckd.pdf. You can find other NKF brochures in PDF format at: www.kidney.org/general/aboutdisease/brochures.cfm. The American Association of Kidney Patients has a magazine and materials for people with chronic kidney disease that you can find from www.aakp.org/CKD.htm. The American Kidney Fund also has information for people with chronic kidney disease at www.akfinc.org. To help you take good care of your diabetes and reduce the risks of diabetes complications, check out this information from the National Diabetes Education Program: http://ndep.nih.gov/get-info/info-control.htm. Hope these links help! |
| april | Re: update on more info (Currently 0 replies) Posted At 13:24:38 10/21/2002 Hi Beth, Thanks for all your information. It was very helpful. Sorry I haven't replied sooner, but I have been researching all the sites you recommended and doing a little thinking. Now I have more questions. To begin with, I will mention again (if I haven't already) I had no history of kidney problems until after the birth of my first son (I was 31) I did develope gestational diabetes and was on insulin during my pregnancy. It started with severe side pain 6 months after his birth which was diagnosed as UPJ obstruction (no previous history). I had a pyeloplasty 12 years later. (Nov. 1999). In 2000, they discovered through renal scan that I lost function in that kidney. I have had 2 stents put in, but the function has not come back. I have mentioned all this because: Could this be IgA Nephropathy all along and maybe the diabetes and the surgery made it worse? Who else can I go to ? I really don't know what to do. That last Dr. I told you about finally sent a letter out to my primary Dr. telling him that I just need to lose weight. (I am 140 lbs , 4' 11") My creatinine is 110, my protein is .8 and I do have blood in my urine, along with occassional high BP which I have never had even when pregnant) but my old urologist tells my doctors that is normal because of the surgery.?! You know I wouldn't even worry about this except for the fact that I am feeling worse every day. Now I get dizzy just about every day along with the fatigue and numbness. Please help! |
| Beth Witten | Re: update on more info (Currently 0 replies) Posted At 10:51:00 10/29/2002 I'd suggest that you post your questions to Nephroquest which you can find on the Nephron Information Center's Dialysis Patient Guide web site at http://nephron.com/dialysishg.html. Several nephrologists are available to respond to questions there. Other than that, I'd suggest that you contact the Kidney Foundation of Canada. Good luck! |
| Beth Witten | Re: update on more info (Currently 0 replies) Posted At 13:12:03 10/30/2002 You can subscribe to a listserv about kidney disease by emailing kidneydisease@majordomo.srv.ualberta.ca. It is my understanding that physicians respond to questions on this listserv. |
| Joan Hinrichs | Nephrologist (Currently 0 replies) Posted At 18:24:44 05/18/2003 I am trying to find information on Nephrologists in ThunderBay, Toronto or Winnipeg and was wondering if you have any information on this topic/ Thank you kindly! |
| Joan Hinrichs | Nephrologist (Currently 1 replies) Posted At 18:25:05 05/18/2003 I am trying to find information on Nephrologists in ThunderBay, Toronto or Winnipeg and was wondering if you have any information on this topic/ Thank you kindly! |
| Beth Witten | Re: update on more info (Currently 0 replies) Posted At 16:59:59 05/22/2003 I'd suggest that you contact the Kidney Foundation of Canada. You can find their web site at http://www.kidney.ca/index-eng.html. If they can't refer you to a nephrologist, they should be able to tell you how you can find one. |