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This
is Renita Imperial's Story
Routine Checkup Triggers
By Renita Imperial
In 2004 I was a busy working mother who felt fine. Looking back, I remember now that my ankles always seemed to have water in them, my eyes would get puffy sometimes, and I could make indentions on my legs when I had water in them. But I had no reason to worry.
I thought.
Then I went to my doctor to have a routine physical. A few days later he called to say that my albumin blood levels were very low and my urine protein levels were high. He did not seem too alarmed and asked me to re-test in a month. When I did that the results were the same.
That’s when he started to suspect something called Nephrotic Syndrome, but he wanted a 24-hour urine test to see how much protein I was losing. When that test showed very high levels, he recommended I see a nephrologist.
The new doctor (nephrologist) said the protein levels called for a kidney biopsy. Why? Well, he was certain I had Nephrotic Syndrome. (Editor’s note: symptoms of Nephrotic Syndrome include swelling, protein loss in the urine and high cholesterol). But he wanted to see if I had something else. I remember thinking: "I feel fine. How could something be wrong with me?"
Before I got the results back from the biopsy, the doctor called to say that the initial blood work showed nothing that could be causing this. No lupus. No central nervous problem. No hepatitis C. No single underlying disease.
When the biopsy came back the doctor said I had Focal Segmental Glomerulosclerosis. What upset me most was not having a kidney disease, but knowing that this could affect me having another child. To top things off, he told me that I had what is known as a "collapsing variant” -- a more aggressive form of the FSGS.
I already was taking medicine for my blood pressure and elevated cholesterol. Now I added to that list 120 mgs of Prednisone every other day, which has been the hardest part of living with FSGS to date. I hated being on steroids. I got acne, and lost muscular strength. After a month on them, I got a moon face which made me almost unrecognizable to myself and everyone else. I became depressed because I felt so ugly and bloated and unhappy all the time. I felt like I was going crazy.
After three torturous months on steroids, my nephrologist gave me the news: steroids were not working for me and my protein leakage went from 12 to 18. I was a little disappointed that the steroids did not work, but very happy to be weaning off them.
Next up I tried another drug, Cellcept, which lasted only two months because tests showed I was not headed for remission. My nephrologist now wants to try Cellcept and Cyclosporin in conjunction with one another.
As of today I have yet to try this treatment. Instead I began working out six times a week, changed my eating habits and look and feel better than I ever have. My kidney function has been normal, but my protein levels still remain high and my cholesterol is still very high despite diet and exercise.
I admit to getting very tired of taking so much medication on a daily basis and feeling the effects. But I know that my situation has no chance of getting better if I do not try the Cellcept/Cyclosporin combo treatment. Because I have the "aggressive" form of FSGS, I have not been responsive to immunosuppressant drugs.
The bottom line is that every day I have FSGS. And luckily, every day I feel good.
I do deal with a lot of swelling if I don’t watch my salt, but then I take a strong diuretic that helps me get rid of all the stored up water in my ankles. When I was on steroids I would retain a lot of water and blow up, so much so that I could not wear nice shoes, or even skirts that showed my enormous ankles.
As long as the medications are not taking away from my ability to continue to work or be with my 3 year old son or enjoy the other things in life, then I take every day as it comes and try my best to keep my head up.
I know I will eventually get to a point in the road where my days will be much harder, but I suppose that is when I will take that heavy duty armor out of my closet to do battle with whatever FSGS send me. I can only do the best I can. Every day that I am here fighting is a good day for me.
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