A little background on me

About 10-12 yrs ago I was diagnosed with IGA. It started out as a regular checkup at the doc. After some really weird lab results I was sent to a Nephrologist . He was a little stumped as well because I appeared to be a very healthy female in my early 20's. A kidney biopsy confirmed the
IGA.

The disease more or less was controlled for about 10 years, even through the birth of our daughter. About 2 years ago test results started coming back a little weird again. After changing medication around we decided to get a second opinion this year. Really just another set of eyes is what we were looking for and hoping someone may some other ideas.

We weren't really expecting to hear what we were told. When looked at on paper things appeared to be a lot worse than we had anticipated. So we are in the process of trying to get me on a transplant list. I do NOT need a transplant right now, but with the way things have changed recently we are unsure when or how long before I need a new kidney. It can take quit a while to go through the process of getting on the list, much less actually having a match. We are just trying to prepare in advance.

Fortunately things have been pretty stable over the past 9-12 months. One of the problems is I am on an immune suppressing medication. Therefore, colds and such hit me a lot harder than the average person (kind of like a baby). When I get sick I get tired and it's hard to fight it off. This also puts a strain on my kidneys.

I am currently getting Procrit injections every 2 weeks to help boost my hemoglobin. This will also hopefully boost my energy level.

I am waiting to go in for a day of testing for the next step in getting on the list.

We'll keep you posted.

More Meds today

Well we're hitting another round of antibiotics. hopefully this will help. Augmentin 2 x's a day. Looking forward to a relaxing long weekend !!!!!!!!!!!!

Good Weekend so far

Julie Seems to be doing better this weekend. She's getting some much needed rest. I'm working on getting some lab stats together to post. Her and Isabella are sleeping in this morning. She's hoping to be able to go back to work some this week since she's been out for a while. We're also hoping to hear from the transplant department at Wake with the timing of getting her on the waiting list. They told us in march with would take about 5 months to complete everything. We've done most of the preliminary stuff so we fell like we're on the home stretch...... its just one of those hurry up and wait kind of things.

Thanks to all that have reached out to us with support. Its certainly a scary time for us, but we really believe that everything will work out fine.

today we're going to relax and enjoy the lake.

Turn for the worse

Julies Kidney disease has taken a turn for the worse. Unfortunately total Kidney failure now appears to be imminent. Her disease was relatively dormant and stable for many years. Her function now (both kidneys) is around 20% +/- and decelerating somewhat rapidly. Just a couple years ago she was over 80% function. We are in the process of being put on the waiting list at Wake Forest Baptist Medical Center in Winston Salem, NC.

Will post more data later

Chris

What is IgA nephropathy

What is IgA nephropathy?

IgA nephropathy is a kidney disorder that occurs when IgA—a protein that helps the body fight infections—settles in the kidneys. After many years, the IgA deposits may cause the kidneys to leak blood and sometimes protein in the urine.

Many people with IgA nephropathy leak blood in the urine, but this leakage does not mean they will have long-term problems. Others leak both blood and protein in the urine. If too much protein leaks into the urine, the hands and feet can swell. After 10 to 20 years with IgA nephropathy, the kidneys may show signs of damage. About 25 percent of adults with IgA nephropathy develop total kidney failure. Only 5 to 10 percent of children develop total kidney failure. Symptoms of kidney failure include swelling in the hands and feet, nausea, fatigue, headaches, and sleep problems. By the time these symptoms occur, total kidney failure is near. Total kidney failure means the kidney damage is permanent. People with kidney failure need dialysis or a kidney transplant.

For more information visit -

http://www.kidney.niddk.nih.gov/kudiseases/pubs/iganephropathy/