Primary FSGS

• By mamagemini
• Posted October 24, 2009 at 11:30 pm
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I'm in the same boat...except that I am on no immuno's right now. I just did blood work and will let you know what happens after the creatinine clearance is done.

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• By amelieMA
• Posted October 25, 2009 at 10:04 am
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Steven is at GFR 18 and was just told a few days back that they don't go by the numbers but by "how you feel". I had read that dialysis started at GFR 16 but the neph poo-pooed that notion.

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• By MooseMom
• Posted October 25, 2009 at 12:48 pm
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I was diagnosed with FSGS nearly 20 years ago; I had been hospitalized with pre-eclampsia while I was pregnant. After I had my son, I still was losing a lot of protein, so the docs figured something else was wrong. Had a renal biopsy which confirmed the diagnosis.

Like I said, that was a long time ago, back when not a lot was known about the disease. I was living abroad at the time, and I didn't really know my way around the health care system. No one told me much about my prognosis, and I wasn't put on any sort of treatment.

Soon after, my son was diagnosed with autism, and my renal function was not anywhere on my list of prioritites. I have no idea what my renal function actually was at the time. After several years, I was put on bp meds, but no one ever mentioned diet or anything else peripheral to renal disease.

Fast forward to just five years ago; I had moved back to the US and went for a physical for insurance purposes. My blood lipids were out of sight; I was sent to a nephrologist who told me that "he didn't have much hope for those kidneys". I was sent to a major transplant center for pre-transplant workups. I was then told that my creatinine was too low (1.9) to be put on the list just yet, but that they'd keep my files open.

I am on immunosuppressants and all sorts of meds for gout, bp and blood lipids and high potassium. I watch my diet. I take my doctor-mandated supplements. I take close to 30 pills a day. I keep all of my labs/docs appts and keep close eye on my condition. I have been stable for all of these 5 years. My creatinine is mantained at around 2.3, and my GFR remains around 22. I am in Stage 4, which is pretty rotten, but truth be told, I feel just fine. I have no symptoms that I can feel; I never have. I tend to run out of energy in the middle of the afternoon, but you know, I take three different meds for bp, and the patient info for all three of those list "fatigue" as a side effect. I actually felt better before the onslaught of so many pills, but my numbers are so much better that it's like magic. My bp is well controlled and my blood lipids are actually normal.

I may have been at stage 4 for well over a decade; I have no real way of knowing. But I walk up to three miles a day and am able to do what I need to do keeping my house and looking after my family. I take control of the things I am able to control...meds, diet. I am very careful about those things. I look after myself in order to give myself the best chance for staying off of dialysis. My neph is pleased with my progress and frankly, I think he is surprised by how well I am doing.

Freaking out is a normal response to fsgs. It is big and bad and scary. I will tell you that the psychological stress has been far more difficult to control than the toll of renal disease on my body. I am always so scared that this set of labs will be "the one"...that all of my numbers will suddenly tank. I all too often forget to count my lucky stars that my disease seems to be well controlled.

I am living proof that a person can exist with this disease and still have a normal life. If it takes 30 pills a day to keep me fit and healthy, I'll do it, no problem.

I do wish, however, that someone could discover a cause for this. Something triggers the immune system to work in overdrive. Since my illness was diagnosed after my pregnancy, I have to wonder if THAT was the cause in my case. A developing baby is a foreign object, technically, in a woman's body, and maybe my immune system didn't "ignore" my baby like it was supposed to. If I knew what triggered it, I'm thinking that maybe I'd have a better idea of what I could do to protect the renal function I have left. But I guess I'll never know.

I hope this helps to some small degree. This site offers wonderful support from those who know exactly how you feel.

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• By klocka
• Posted October 25, 2009 at 5:25 pm
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mamagemini, amelieMA, and moosemom, thanks to you all your words help more than you know. I am in this for the long hall. This place has brought so much happiness in my life. thanks for the pick me up!!
Andrea

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