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butterfly225
@butterfly225

Posts: 6
Joined: Jan 13, 2017

IGA Nephropathy

Posted by @butterfly225, Jan 13, 2017

Anyone have any insight / education/ experience with this disease. I am a 34 yr old female, I was diagnosed in 2012, After several misdiagnosed urinary track infections. I started showing large amount of blood in my urine along with other red flags through my blood and urine. A kidney biopsy concluded that I had IGA Nephropathy. I currently have my urine and blood tested once a year by my primary care physician. I have been referred several time to Nephrology, but have failed to be excepted in only by resident or Pa., which I decline. With this type of disease I feel that as thing progress I would need to have a good relationship with a highly qualified Doctor. So, I will keep searching . At this point my test levels have remained good and I have shown no alarming symptoms.

Liked by Scott, cehunt57

REPLY

Welcome to Connect, @butterfly225.
It sounds like, despite the intital UTI misdiagnosis, your condition was caught relatively early. Do currently take any medications to control the condition? Were you referred to nephrology at Mayo Clinic or another institution?

Liked by cehunt57

The UTI(S) were caught relatively early , over the course of approximately two to three years. I do not take any medications. I have heard that flaxseed can be helpful, but I have not had any doctors confirm this. At this point I just watch my sodium intake and avoid naproxen, ibuprofen medications, etc….
My referral was to Geisinger Medical Center, however I am going to attempt to get into Evangelical Hospital

Liked by cehunt57

@butterfly225

The UTI(S) were caught relatively early , over the course of approximately two to three years. I do not take any medications. I have heard that flaxseed can be helpful, but I have not had any doctors confirm this. At this point I just watch my sodium intake and avoid naproxen, ibuprofen medications, etc….
My referral was to Geisinger Medical Center, however I am going to attempt to get into Evangelical Hospital

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Butterfly, I’d like to introduce you to @rosemarya @predictable and @vickiekay, who have also dealt with kidney issues.
I wish you the best with getting accepted into Evangelical Hospital. Should you wish to consult with experts at Mayo Clinic, here is the contact information for all 3 campuses: http://mayocl.in/1mtmR63

Liked by cehunt57

Thank you for you welcoming and introductions. Your wishes are greatly appreciated! I wish you the best through your journeys as well.

@butterfly225, I would like to welcome you to Connect. I want to congratulate you for being pro-active about your own health care. Have you looked at the information about IGA Nephropathy at https://mayocl.in/2jG7q9J ?
My kidney experience is related to receiving a transplant due to sudden kidney failure related to my liver disease. So I do not know much about kidney disease other than that. But I want you to know that I am concerned that you receive the best possible care. From my experience, my PCP identified that something was wrong in my liver – but the referral and specialized treatment by the gastroenterologist and liver specialists kept me alive.
I hope that you are able to get the specialized treatment soon.
Rosemary

Liked by cehunt57

Thank you.

Liked by cehunt57

butterfly225, you were wise to connect to this forum! I was diagnosed with IgA Nephropathy ten years ago. It was not correctly diagnosed until I came to Mayo in Rochester. If you google IgA Nephropathy and fish oil, you should come up with a trial study published in the New England Journal of Medicine. Mayo was one of the institutions who took part in this study. When i was diagnosed (stage 2-3), my nephrologist did several things. I was advised to keep my blood pressure within normal limits, I went in for checkups once a year. These checkups always included a 24 hour collection of urine to check for proteins, and other blood and urine tests. He also suggested including fish oil because of this study. I was also given a prescription to control bladder irritation if the bleeding occurred and this greatly helped. My last prescription was for Bactrim as a prophylactic to counter any bladder infections that might occur because of small amounts of blood in the urine. I also have taken fish oil religiously since that recommendation. My neighbor is a retired nephrologist and he said that I will probably die with this disease, but not because of it! As the years passed, the bleeding episodes diminished in frequency and intensity. I have been episode free for three years now. Why this happened, i don’t know, but I am truly happy. I am now monitored by my primary care physician. She always includes the 24 hour urine test as part of my yearly physical and monitors the creatinine level. If the results were not normal, I would visit my neurologist. I hope this advice helps. It was very alarming to go through the bloody urine episodes.

butterfly225, I have another thought. Is there any possibility you can be seen by the nephrologist who diagnosed you?

My husband has IGA. Hoping for kidney transplant. Wondering how long do you have to get to hospital to receive the kidney?

Liked by cehunt57

Hi Shirley,
You'll notice that I moved your message to an exiting discussion about IgA nephropathy (Berger's disease). I did this so you can meet others talking about IgA, like @AlwaysHopeful and @butterfly225. I'd also like to bring @kidney09 into the discussion. She had a transplant due to Berger's disease (IgA) 8 years ago.
Looking forward to hearing more about your situation.

@shirley2216

My husband has IGA. Hoping for kidney transplant. Wondering how long do you have to get to hospital to receive the kidney?

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@shirley2216 I’m unfamiliar with IGA but I’m also anticipating a kidney transplant at some point. If your husband has a living kidney donor the transplant surgery can be planned/scheduled for optimal results for everybody involved. If it is a deceased donor, other factors need to be considered such as when and where the donated kidney becomes available etc. Either way your husband should have a coordinator that will help prepare you for your situation and pave the way.

I would like to share the following article with you-

My Second Chance – Savannah Mullis
https://connect.mayoclinic.org/2016/10/12/my-second-chance-savannah-mullis/

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