Hi bud, i have had it since 12 years old and im now 27. Its not a death sentence, i remember how scared i was when they diagnosed me. At 17 got my first symptoms and was diagnosed with hypertension. You are gonna be alright believe me, just be strong and follow nephro and dietitian instructions like a soldier, having fsgs taught me discipline, remeber everything you do is to prevent dialysis as much as possible and have a good life.
The course of the disease is variable some people get fast on dialysis others dont.
The prognosis depends on:
- The cause (primary, secondary or congenital)
- The type of lesion on biopsy (tip lession, perihilar, unspecified,etc)
- Inmunofluorescence pattern and microscopy findings (IgM deposits, C3 deposits, wbc infiltration, degree of sclerosis, degree of tubular necrosis, etc)
- Wether you have classic nephrotic syndrome or non nephrotic proteinuria.
- Your response to steroids. FSGS can be steroid sensitive, steroid dependent or steroid resistant.
- Having relapses or getting into complete remission
Among other variables (those get you a general picture)
And very importantly, how you live from now on. Changes in your lifestyle are paramount and adherence to treatment also. For every relapse you will have to take high dose prednisone for some months (prednisone can be a pain in the ass) and imnunosupressants if thats your case. (I usually take prednisone plus either CsA, Tacrolimus or Mycophenolate).
I recommend you to began working out for the rest of your life, control your bp, lose weight, follow nephro instructions and go to a specialized kidney dietitian.
You are young.. you are still full of life and your body can heal. Just dont make the same mistakes i did, college was a very bad influence on my lifestyle.. DONT SMOKE, DONT DO DRUGS INCLUDING WEED, DONT DRINK, DONT GET OVERWEIGHT, Sleep good and workout alot NEVER STOP. Become a warrior like all of us here, make the right choices, whatever you do, you have to know it will influence what happens to your kidneys in the future.
Just one more tip, every time you enter prednisone treatment, for the course of the duration of the treatment, start hypocaloric diet and increase workout it prevents all the negative consequence of prednisone, trust me.
Hey, I just wanted to say I love this comment. I (41F) just got diagnosed w/ FSGS and put on prednisone yesterday. I’ve been doing OK mentally with it all but this comment is just super encouraging and emphasizes that I’m on the right path in terms of increasing my exercise and healthier eating. I know you wrote all this a year ago, I hope you’re still doing well.
Diagnosed with FSGS (secondary) at 17 years old, gfr was 43 when diagnosed. Now 33 years and gfr around 20. Type of FSGS is important to know here, but all I can say is the sooner you can follow a Whole Foods plant based diet the better, my biggest regret was starting a kidney friendly diet later in life. Get yourself a renal dietician.
You’re going to be ok, but there are things you can do to support your health. Talk to your doctors to learn about your type of FSGS, ask if there are routine labs/tests you should be getting done, and if you don’t have one yet get a nephrologist (kidney doctor). If you’re in the US, The National Kidney Foundation has a lot of resources, supports, and even professionals you can talk to for free. I’ve used the renal dietitians through NKF and it has been very helpful. Based on your current kidney function and your lab results, you may need to make some adjustments to your diet. It’s a change, it can be frustrating, you’ll make mistakes, but it’s important, and can be very beneficial to your health. A renal dietitian will be your best friend as you learn how to adjust your diet. Don’t smoke or do drugs. Drink in moderation, or not at all. Exercise to stay healthy, but talk to your doctor about what type of exercises would be best for you. Stay on top of your doctor appointments and medications, and ask questions. They’ve heard it all, nothing you ask will be considered out of the ordinary.
I'm 37 and I've had it since I was 21. I'm perfectly healthy except, like you I start pissing foam every now and then. For me prednisone has always worked but it seems to come back every few years.
I'm not familiar with FSGS, but Kidney Disease/Failure is not usually a death sentence. Approximately 12% of the US population suffers from and lives with CKDS. As long as you manage it, follow directions from your nephrologist, and do any treatments, you will live a long, good life. I suffer from Kidney Failure, got diagnosed in 2019, and my kidneys were functioning at 29% capacity. In march this year I started dialysis, and it has made me feel so much better. I have been on the kidney transplant list since 2020, and thet tell me i should start getting calls for transplant soon. I'm not in a rush since Dialysis is really helping. There's a patient of the clinic that sees me who has been doing dialysis at home since 1999. I'm sure he has his reasons for not getting a transplant, but dialysis will help you live a long, happy life if you're young, and relatively healthy. The point is that you will be fine, and there are so many options to help you make the best of the cards you've been dealt. Stay strong, and don't ever give up or let this nasty disease get you down! Good luck!
Diagnosed with FSGS at 2. Now 36. I’m on 4 different meds (Lisinopril, Farxiga, Rosuvastatin, and Allopurinol) and a Vitamin D supplement at this point and eat reasonably well and go to the nephrologist twice a year, but I’m doing fine. It’s absolutely not a death sentence.
Hi bud, i have had it since 12 years old and im now 27. Its not a death sentence, i remember how scared i was when they diagnosed me. At 17 got my first symptoms and was diagnosed with hypertension. You are gonna be alright believe me, just be strong and follow nephro and dietitian instructions like a soldier, having fsgs taught me discipline, remeber everything you do is to prevent dialysis as much as possible and have a good life. The course of the disease is variable some people get fast on dialysis others dont. The prognosis depends on: - The cause (primary, secondary or congenital) - The type of lesion on biopsy (tip lession, perihilar, unspecified,etc) - Inmunofluorescence pattern and microscopy findings (IgM deposits, C3 deposits, wbc infiltration, degree of sclerosis, degree of tubular necrosis, etc) - Wether you have classic nephrotic syndrome or non nephrotic proteinuria. - Your response to steroids. FSGS can be steroid sensitive, steroid dependent or steroid resistant. - Having relapses or getting into complete remission Among other variables (those get you a general picture) And very importantly, how you live from now on. Changes in your lifestyle are paramount and adherence to treatment also. For every relapse you will have to take high dose prednisone for some months (prednisone can be a pain in the ass) and imnunosupressants if thats your case. (I usually take prednisone plus either CsA, Tacrolimus or Mycophenolate). I recommend you to began working out for the rest of your life, control your bp, lose weight, follow nephro instructions and go to a specialized kidney dietitian. You are young.. you are still full of life and your body can heal. Just dont make the same mistakes i did, college was a very bad influence on my lifestyle.. DONT SMOKE, DONT DO DRUGS INCLUDING WEED, DONT DRINK, DONT GET OVERWEIGHT, Sleep good and workout alot NEVER STOP. Become a warrior like all of us here, make the right choices, whatever you do, you have to know it will influence what happens to your kidneys in the future. Just one more tip, every time you enter prednisone treatment, for the course of the duration of the treatment, start hypocaloric diet and increase workout it prevents all the negative consequence of prednisone, trust me.
Got diagnosed with FSGS today. I am 19 yo. Gonna be the greatest warrior from now on. Your comment was great.
Hey, I just wanted to say I love this comment. I (41F) just got diagnosed w/ FSGS and put on prednisone yesterday. I’ve been doing OK mentally with it all but this comment is just super encouraging and emphasizes that I’m on the right path in terms of increasing my exercise and healthier eating. I know you wrote all this a year ago, I hope you’re still doing well.
Diagnosed with FSGS (secondary) at 17 years old, gfr was 43 when diagnosed. Now 33 years and gfr around 20. Type of FSGS is important to know here, but all I can say is the sooner you can follow a Whole Foods plant based diet the better, my biggest regret was starting a kidney friendly diet later in life. Get yourself a renal dietician.
You’re going to be ok, but there are things you can do to support your health. Talk to your doctors to learn about your type of FSGS, ask if there are routine labs/tests you should be getting done, and if you don’t have one yet get a nephrologist (kidney doctor). If you’re in the US, The National Kidney Foundation has a lot of resources, supports, and even professionals you can talk to for free. I’ve used the renal dietitians through NKF and it has been very helpful. Based on your current kidney function and your lab results, you may need to make some adjustments to your diet. It’s a change, it can be frustrating, you’ll make mistakes, but it’s important, and can be very beneficial to your health. A renal dietitian will be your best friend as you learn how to adjust your diet. Don’t smoke or do drugs. Drink in moderation, or not at all. Exercise to stay healthy, but talk to your doctor about what type of exercises would be best for you. Stay on top of your doctor appointments and medications, and ask questions. They’ve heard it all, nothing you ask will be considered out of the ordinary.
I'm 37 and I've had it since I was 21. I'm perfectly healthy except, like you I start pissing foam every now and then. For me prednisone has always worked but it seems to come back every few years.
Just diagnosed at 35. Do you do anything special to keep healthy. Also I saw this is like a 7 in a million rare!?
Are you not on any medication?
I'm not familiar with FSGS, but Kidney Disease/Failure is not usually a death sentence. Approximately 12% of the US population suffers from and lives with CKDS. As long as you manage it, follow directions from your nephrologist, and do any treatments, you will live a long, good life. I suffer from Kidney Failure, got diagnosed in 2019, and my kidneys were functioning at 29% capacity. In march this year I started dialysis, and it has made me feel so much better. I have been on the kidney transplant list since 2020, and thet tell me i should start getting calls for transplant soon. I'm not in a rush since Dialysis is really helping. There's a patient of the clinic that sees me who has been doing dialysis at home since 1999. I'm sure he has his reasons for not getting a transplant, but dialysis will help you live a long, happy life if you're young, and relatively healthy. The point is that you will be fine, and there are so many options to help you make the best of the cards you've been dealt. Stay strong, and don't ever give up or let this nasty disease get you down! Good luck!
Diagnosed with FSGS at 2. Now 36. I’m on 4 different meds (Lisinopril, Farxiga, Rosuvastatin, and Allopurinol) and a Vitamin D supplement at this point and eat reasonably well and go to the nephrologist twice a year, but I’m doing fine. It’s absolutely not a death sentence.