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Diagnosed with IgA nephropathy, have edema in ankle and less kidney function. Any solution?

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General & Family Physician
Practicing since : 2009
Answered : 3041 Questions
My name is 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 Militay 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 kidney is functioning at 67%. Here is my case histroy:

I reported to the Academy medical clinic with pain on urination. Blood test was administered. No protinuria or hematuria reported in the urinalysis dated 7 Mar 1995. When repeated on 8 Mar 1995 small hematuria and no protineuria reported. No follow test performed. A blood and urine test that I had on 12 XXXXXXX 1996 showed trace amounts of blood and protien in my urine. No follow up tests were performed. I had a blood and urine test complete on 5 Dec 1997, total protien was reported as high. Tests conducted on 6 Dec 1997 showed large blood but negative for protien. 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 protineuria or hematuria. Follow up urine test on 9 Dec 1997 again was negative for blood and protien. 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 tey 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 bloodwork done which included creatnine, 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 sedentry life style and does not have a histroy 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 bloodwork and urine analyses completed in 2002: 17 Jul 2002 urinalysis showed trace blood. Bloodwork on 23 Jul 2002 showed low Hematocrit, urinalysis was negative for protien and blood. Urinalysis for 24 and 25 of Jul 2002 were also negative for blood and protien.
August of 2002 I applied to a life insurance company for life insurance and RRSPs. I had to complete bloodwork and urine sample as part of the apllication. Bloodwork 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 transfered 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 protien and trace blood. The test was repeated 13 January 2005 and again there was trace protien and trace blood. I was then referred to an internest in Toronto and I was sent to a Neprologist 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 could my kidney disease have been picked up earlier with better follow-ups and other testing?? If it could have been picked up earlier, how much earlier?? Thank you I look forward to your response. Please let me know which documents you would like to see and I will send them on to you. XXXXXXX XXXXXXX
Posted Tue, 2 Apr 2013 in Kidney Conditions
Answered by Dr. Luchuo Engelbert Bain 2 hours later
Hi and thanks for the query,
The picture you present i actually the classical evolutionary trend of IgA nephropathy. To be very honest with you, the follow up from the very start till you meeting the Dr in Barria area for the biopsy and definitive diagnosis is pretty good.
I do not actually think scientifically that from the start of the symptoms, you would been offered a biopsy as an option to detect it that early. This is because, there was hematuria, no proteinuria and the kidney function tests were pretty good. Persistence of hematuria, onset of proteinuria and even the XXXXXXX Venous thrombosis were actually elements that had to raise an alarm that it could be IgA nephropathy. However, the doctors could actually be justified since all blood samples were run with normal kidney function tests.
I would actually say the timing to send you to the nephrologist for a kidney biopsy was fairly reasonable and exact. It is not systematic practice to send all patients who present with persistent hematuria for a kidney biospy. Causes of hematuria are diverse, and there are patients who present with hematuria but never develop any disease. I suggest they actually did their best to look for the cause and monitor your kidney function, and at the appointed time they did send you for further management.
Thanks and hope this helps,
best regards and feel free asking further questions if need be.
Luchuo, MD.
Above answer was peer-reviewed by
Follow-up: Diagnosed with IgA nephropathy, have edema in ankle and less kidney function. Any solution? 1 hour later
I understand that not everyone is sent for a kidney biopsy. But I had a DVT in Dec 1997, edema from 1998 right through until actual diagnosis and still have edema in my lower limbs. I also had recurring blood and protien in my urione although not always consistant from 1995 until 2004 when it became persistant. During that whole time from 1995 until 2004, there was only one set of blood work that tested for creatnine and BUN and that was the day that I was sent to see an Internist for edema. That is a period of 8 years that I kept asking questions about these reoccuring issues that no one could answer for me. In addition, while they were monitoring me for the persistant blood and protien in the urine in 2004 and 2005, I then presented with 4 different positive d-dimer and then suffered a DVT and double PE.
Answered by Dr. Luchuo Engelbert Bain 14 minutes later
Hi and thanks for the query,
you are right that at the moment when the hematuria started being accompanied with persistent proteinuria, it was high time to suspect IgA nephropathy and refer you for a biopsy. This did not come up clear in the first report, or may be I missed it.
HEMATURIA + PROTEINURIA , especially persistent is an indication for kidney biospy to exclude IgA nephropathy, you are perfectly correct.
I buy the idea, they really would have asked for the biopsy earlier. Its very logical and scientific. From the year 1997 and 1998 when they noticed protein and hematuria always together, that was then that they had to refer you for a kidney biopsy. Referring you to a nephrologist even earlier in the course of the intermittent proteinuria/hematuria episodes was logical.
Thanks and hope this helps, and I buy your idea.
Thanks and best regards,
Luchuo, MD.
Above answer was peer-reviewed by
Follow-up: Diagnosed with IgA nephropathy, have edema in ankle and less kidney function. Any solution? 7 minutes later
So if one of my Doctors had picked up on the persistant yet intermittant blood and protein in the urine along with the lower limb edema, then there should have been further testing and earlier diagnosis?
Answered by Dr. Luchuo Engelbert Bain 3 minutes later
Hi and thanks for the query,
yes for sure. It was evident for a referral to be made then for a biopsy to exclude IgA nephropathy. A nephrologist opinion was required.
thanks and best regards,
Luchuo, MD.
Above answer was peer-reviewed by
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