does anyone have a kidney disease called nephrotic syndrome/fsgs?i have it and im going through a really rough time, i was diagnosed when i was 2, last year sept 6 i got my tonsils out, ever since then everything has been down hill, im only 12 i shouldnt be going threw what i am right now, just so many problems, and no answers, so someone with it could you give me your email address or something so we can talk about it and c it there are any relations plz and thank you
Posted by Anupam
This disease affects children and most patients grow out of it as they enter adolescence. I had this when around 5 yrs until about 13 yrs of age. Prednisone and Lasix tablets were be prescribed to reduce swelling and help with urination.
Later, what helped most was homeopathic medicine and also some form of exercise when i became slightly better to exercise. It finally slowly died down at 14yrs of age.
Try Dr. shah for homeopathic medicine.
Posted by the nurse
unfortunately, i do not feel comfortable giving that information out...email address etc. But i want to let you know there is someone out there who knows what you are going through.
(just to let you know, I have chrons disease/ulcerative colitis too)
Diagnosed at 14 and I am going off to college now. I take 18 pills a day, including prograf and bumex and many vitamins. When i was 14, they could not get me off steroids so i was so bloated and gained so much weight that i was ostracized every day. To get off steroids, they put me on cytoxin, which then i lost my hair, and continued to basically hate everything. I did not understand why i was going through this. My friends even left me because i was sick. I could not stand hating everyday so i decided that something needed to change, I said i needed to be happy. So i made life the way i wanted it, and i pushed for everything. Eventually i got better for a long time.
When i was 16, i got very ill and was hospitalized in and out for 3 months. I would throw up non stop and i got dehydrated. i had picc line, receiving 10 hour albumin infusions at home, taking about 25 pills and epogen shots. I had gained about 30 pounds of water. I had no idea what to do or who to turn to. I thought i wasnt ever going to return to the hospital but i would keep ending up there and i would cry so hard that i couldn't even breathe. It seemed like nothing was going right. It was a terrible time but i had to pull myself through. i had to fight for what i wanted, and i never gave up, no matter how depressed I became. I almost needed a transplant but i got better.
Basically, i got better slowly. Recovery was just as hard as treatment. I could not even get myself up one stair because of how weak i became. I have had edema ever since then and continually see the doctor and get lab work done. I never ever let me FSGS get in the way of anything. I am currently going into nursing school so i can help others because i want to give back, i want others to know that i can relate to them and that i am going to take good care of them. FSGS has made me strong, perserverent, courageous, loving, a fighter, and has pushed me to work hard for everything.
I am in a partial remission, meaning my kidneys work like a normal person's does, except there is scarring, so protein still leaks. I am living a normal life and I have found those who are my true friends and who are there for me every step of the way. I take nothing in life for granted and I know I can face whatever life throws at me
That is my story in a nutshell. if you would like to post details about what you are going through, I would love to hear.
Never give up and keep fighting. I know it is hard, I know that you should not have to go through this painful experience. Just know that there is someone out there who has gone through the same experiences as you, and is praying for your health.
Be well and good luck.
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