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Diagnosed with IgA Nephropathy. Had pain while urinating. Test showed blood and protein in urine. Advise?

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Practicing since : 1994
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My name is Sheri-Lynn XXXXXXX I have a bit of a complicated case history. I will try to explain it as simply as possible and then send all necessary reports so that you can examine them. I joined the Canadian Military in XXXXXXX 1992. I left the service in May 2009. One of the reasons for my leaving was due to my diagnosis of IgA Nephropathy. Since I was diagnosed I have received the best care that anyone could ask for from the best physicians and specialists. What I would like to find out is, after I present my medical documents to you, could my case have been identified sooner. Right now each of my kidneys is functioning at 67%. Here is my case history:

I reported to the Academy medical clinic with pain on urination. Blood test was administered. No proteinuria or hematuria reported in the urinalysis dated 7 Mar 1995. When repeated on 8 Mar 1995 small hematuria and no proteinuria reported. No follow test performed. A blood and urine test that I had on 12 XXXXXXX 1996 showed trace amounts of blood and protein in my urine. No follow up tests were performed. I had a blood and urine test complete on 5 Dec 1997, total protein was reported as high. Tests conducted on 6 Dec 1997 showed large blood but negative for protein. Follow up blood work on 7 Dec 1997 showed hematocrit low, lymph% high; mxd high%; neut% high; lymphocytes high; INR high. Urine test on 8 Dec 1997 showed no proteinuria or hematuria. Follow up urine test on 9 Dec 1997 again was negative for blood and protein. Final follow up blood work on 10 Dec 1997 had lymph% high; mxd% high; neut% low; and PT/INR high. On 16 Feb 1998 I had blood work done again which shoed low NA; CL and CO2. At this time I was also reporting to my Doctor that I had been having some real issues with leg swelling. So he gave me some stockings that I could wear at night to try and reduce the swelling (edema). He also recommended that I elevate them when I could to try and decrease the swelling. I had more blood work done on 26 April 2000 which showed everything normal. I continued to suffer from edema in both legs. On January 22, 2001 I had blood work done which included creatinine, BUN; Albumin, all normal, nor urinalysis done or any other testing. I also had an appointment with an internist who completed a basic examination and determined the following: "no history of rheumatic fever or cardiac disease, she is not SAD, as for her DVT, she is no longer on birth control pills. She has not had a sedentary life style and does not have a history of liver or kidney disease. Physically she is a tall, 5 foot ten inch obese woman, blood pressure of 105/65, with normal first and second heart sounds. Her chest was clear, abdomen was soft. Ankle had a mild edema of about one plus. Pedal pulses were palpable. I think she has so called idiopathic cyclical edema XXXXXXX After this consult I received a second pair of elastic stockings.

My edema in my lower legs did not get better with a second pair of stockings, it only worsened. I continued to let my Doctors know, but nothing was done. I had a series of blood work and urine analyses completed in 2002: 17 Jul 2002 urinalysis showed trace blood. Blood work on 23 Jul 2002 showed low Hematocrit, urinalysis was negative for protein and blood. Urinalysis for 24 and 25 of Jul 2002 were also negative for blood and protein.
August of 2002 I applied to a life insurance company for life insurance and RRSPs. I had to complete blood work and urine sample as part of the application. Blood work was good but urine came back with blood in sample. I was denied for application and told that once I checked it out (I was told that it was probably an infection) that I would be able to re-apply. I waited a year (late summer 2003) and made application again only to find blood in the urine once more. (I did not tell them that I had not gone to see my Doctor about this possible urine infection the last time.)
I did not go to my Doctor this time because I was working shift work and I could not really find the time.

At this point when I went in to get a full work up done, the follow ups continued regularly and I was able to finally get a diagnosis. My edema was taken seriously and I was able to get answers.

I was transferred from the Halifax, NS area in October 2004 to XXXXXXX ON. At that time I went to establish a regular Doctor at the base I was going to be working at and requested a full blood work up and urinalysis. The results of the tests done 28 October 2004 showed trace protein and trace blood. The test was repeated 13 January 2005 and again there was trace protein and trace blood. I was then referred to an internist in Toronto and I was sent to a Nephrologist in XXXXXXX by April 2006 and a biopsy completed, diagnosis confirmed as IgA Nephropathy.

From the point that I arrived in the XXXXXXX area, I was able to get things moving in the right direction. What I would like to know is the following.... could my IgA Nephropathy have been diagnosed in 1997 or 1998 or even in 2001 when I went to seen the Internist if the correct testing had been conducted. Id I had been diagnosed as early as 1997/98 or 2001, would my kidney function have been saved? At the time that I was finally diagnosed my protein output was as high as 3 grams a day and the samples from the biopsy showed that I had casts which then had me on high doses of steroids for then next 3-4 years. I am searchning for answers so I can come to terms with what I am living with right now. Any wisdom or knowledge you can offer would be appreciated. Thank you. XXXXXXX XXXXXXX
Posted Thu, 27 Jun 2013 in Kidney Conditions
Answered by Dr. Sree Bhushan Raju 47 hours later

Thanks for the query.

Ig A nephropathy, usually presents as intermittent hematuria and sometimes proteinuria. The ones who present with overt (macroscopic) hematuria will invariably have benign course and will be asymptomatic throughout the life. Those who have proteinuria nd hypertension will develop a low progressive course of kidney dysfunction. Frequently, few patients present with rapidly progressive course where in the kidney function starts deteriorating over period of months and ultimately leads to kidney failure requiring dialysis.

So Ig A nephropathy is big spectrum which ranges from a simple and benign intermittent hematuria to rapid kidney failure which doesn't respond to any kidney therapy.

Coming to your condition-
There are certain issues which are not convincing to me. When you had such swelling of feet, you never had significant proteinuria. Usually those of significant proteinuria would develop swelling of feet and at least 3 gm/day. In your case when you had swelling, you did not have protein in the urine.
When you present with intermittent hematuria, your doctor did not suspect Ig A nephropathy as you never had significant (atleast 1 gm/d)of protenuria. And there was no indication either to do renal biopsy so that one can prove Ig A nephropathy (even if your doctor suspects, difficult to prove as indication for biiopsy was not there).

It is not known how rapidly your proteinuria increased as never was a report of urine that was more than 2 +. It is very likely that your doctor fails to suspect Ig A nephopathy.

As you underwent renal biopsy and Ig A nephrpathy is proven now, we need to discuss the prognosis and risk of kidney damage in the due course or life time risk of kidney failure. As you have mentioned that you had 3 gm of proteinuria per day , I would say that it's a bit bad prognostic marker. You did not mention about creatinine, lipid profile; your personal habits like smoking etc. The reports would determine the ultimate prognosis. You had recurrent episodes of DVT which suggests that you have "thrombotic XXXXXXX tendency and proteniria of 3 gm/day would contribute to such a predilection.

I need some more information of the reports mentioned and few more clinical details to comment further.

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