been coping, tired of coping

[happycc7]

I have been diagnosed with IgA Nephropathy in 2000 via biopsy however I have had the disease tens years earlier since my late teens.
I am now a 28 yrs old mom of 7 kids and really feel like a burden on my family.

I live in East Bay California. Never met a single person with IgA Nephropathy and feel really lonely always having to explain my condition even to doctors and er docs. I am with Kaiser and have yet to meet a doctor that knows what it is I have and how to deal with it. Kaiser always makes you call the call center and the people who answers don't know squat and appearantly they can't even put on the computer what I have so I always have to explain over and over.

For the last 20 yrs I have been prone to all kinds of strange infections(cellulitis, uti, strep, mastitis, colds, flus) at least once a month which of course causes me to have a flare up of gross hematuria, abdominal pain, flank pain, fevers with chills, fatigue, severe headache for several days. I have had two bouts (one month apart)of acute renal failure secondary to pylonephritis and spent xmas day in the hospital. They didn't want to transfuse me or dialysis because it might affect my transplant or something like that. Instead I got some kind of shot in my belly to increase red bloos cells. Went home with a pic line.


I can't work consistently and I was in nursing school but got sick way too much. I can't even volunteer consistently because I miss too many days being sick. My kids are sick of me being sick and they reallly need me and the older ones-the teens are really angry about it. My husband loses workdays when I am sick.

I have trying to live life as fully as I can but it frustrates me when my body won;t let me. My father and I are not close and wouldn't know what to do to help me. My mother blames me for not taking "good" care of myself. I dont smoke, drink, do drugs and never had.

I take my medications daily,take prenatal vits everyday, fish oils and acidophilus. I don;t have problems with high bp or high cholesterol anymore. I don;t have diabetes. I try to stay active and exercise. I make sure I laugh everyday. I pray.

What more can I do? I am in some kind of holding zone until things get WAYYY worse with my kidneys. Meanwhile I just suffer with getting sick all the time.

[Beth Witten MSW ACSW]

I'm sure it is very frustrating and scary to have a chronic illness like FSGS that isn't easy to diagnose, much less to treat and to feel like you have no control over what's happening to you. Maybe these resources will help a little.

Here's a fact sheet from the National Institutes of Diabetes and Digestive and Kidney Disease of the National Insitutes of Health that may give you some ideas of questions to ask your doctor:

http://kidney.niddk.nih.gov/kudiseases/pubs/glomerular/index.htm

Here's a website for an organization that focuses a lot of its attention on FSGS. It has chapters in some states.
http://www.nephcure.org/

It sounds like you may be interested in cutting edge treatment. Here are some clinical trials:

http://www.clinicaltrials.gov/ct2/results?term=fsgs

And a website for one of the clinical trials:
http://www.fsgstrial.org/

You can read medical journal abstracts or articles about FSGS by searching the Internet for PubMed (www.pubmed.gov).

There may or may not be a live support group in your area. if you use Google. you can find Internet support groups for people who have FSGS. They should understand your concerns and may have found answers to question you haven't even thought of yet.

http://groups.yahoo.com/search?query=FSGS+support

http://www.inspire.com/groups/nephspace/

Good luck and know that we're thinking of you.

[Steffiep23]

Dear Happy, I'm sorry to hear about your disease problems and the lack of support that you endure. Remember, when it comes down to it, you are the only one who lives in your body. These people are peripheral to your big problem. There are things to worry about in life, like kidney disease, and there are what most people consider problems which are really minor compared to what life can really throw at you. I know it's hard to be considered as if you were putting on these symptoms and you could pull yourself up by your bootstraps.

I'm new here and haven't even seen a nephrologist yet (Jan 4). But I'm in the stage: "I told you I was sick". Finally a reason for my symptoms and it's not just that I'm lazy!

God Bless You. Stef