I have membranous glomerulonephritis (they originally thought it was minimal change disease but after my kidney biopsy it was changed to mgn) and I guess you could say I’m in remission because I’m only taking losartan and atorvastatin. After taking prednisone and cyclophosphamide I told myself I would never take them again if I relapsed or got a flare up. I don’t know if your nephrologist warned you about developing avascular necrosis due to the prednisone but mine did and I didn’t think I would get it and surprise I got it! Now I have to get both of my hips replaced and I recently found out I have it in my elbows 😑😑 my joints are going one by one because of my treatment for this kidney disease. I never thought I’d need to use a cane and a walker at the age of 26 but here I am.
I applaud you. You really explain very well life with nephrotic syndrome (through your many videos). You're doing a great service to all who have it (and do not know they are not alone), as well as a great job helping families and friends of these patients. Congrats! I have nephrotic syndrome, I am 50 + and you're an inspiration. Continued health to you.
I was diagnosed with nephrotic syndrome in first grade and i'm now in seventh grade and have had 8 -9 relapses. im grateful that i can see some of the best doctors(i live 30 minutes away from boston childrens) but still.
Whatever be happens I'm living with mcd. Leave death fear no problem with death . We even don't know after death it's part of life I'm 26 now I'm going peaceful. Stay positive hope on god
Glad I came across your channel! I have MCD and currently on pred + prograf (working so far). I was diagnosed at 17 and have relapsed a couple of times since, I’m now 23. I rebiopsied last month to make sure it’s the same disease and it is.
I have nephrotic syndrome and after six years only on two tablets a day Amodipine and Metopratol and came off steroids two years ago and sqclisporin. Still have to see the doctor so no relapse which is fun.
I just got diagnosed with the same thing I'm 29 almost30., your videos give me so much hope! Do you by chance fb group or Instagram where we could ask more personal questions? Please continue with life updates and more videos. Thank you for sharing and helping others like myself along the way!❤
Hello! My most recent update is now live! To get regular notifications about my videos, the easiest way is to subscribe and click the bell icon so you’re always notified when I upload a video (which is hopefully once per week now) ua-cam.com/video/v6wr0_6HKRA/v-deo.html . Best wishes 😋
just wanna know what's your creatinine level now at present and was when you got sick btw love our positivity keep going on. I was diagnosed with wegeners granulomatosis at the age of 21 now I'm 25 and my both kidneys were damaged & creatinine level went up to 7.8 and after doing 4 times of dialysis within 10 days it got better and I just checked my blood level 4,5 days ago and creatinine level was 1.0 which is quite a normal but I was on 7 different kinds of medication when i got diagnosed and mainly devil drugs steroids for 22 mths starting from 80mg .In my pov it might not works for other but I smoke weed quite a much till now since when I got all rid of medication except steroids which that time I was only on 5mg a day and weed really works for me even doc gave me a pass on that and say you can smoke but in a right amount another major way for me is workout I spend 2hrs a day in gym always so by the help of this process I feel really good more than a normal I don't think that I'm still in remission when I got sick I was only 130 pound being 5.11 height I was so pale and skinny looks like I was ready to die but within 3yrs I gain upto 30 to 40 pounds now I'm something around 185lbs hope you don't get bore by my comment, xoxo
Honestly things get better from hospital, I was there once and probably lost the people in these comments. I will be honest, hospital was the worst time for me and I felt the way you did but there is a light and you will get out sooner than you think
Can MCD progress to fsgs.please reply I am so affraid.that how much more my kidney work.i am 17 years old suffering from MCD.please tell I am waiting.........😢😢
Eventually some time but rare It take 10 to 15 years time In this time period enjoy as much as you want Take your food , activities, No one live on this earth . We are different from this planet. We will born again
@@ImranAli-we9fw There is no particular diet for mcd Most of the mcd patients Reducing their salt intake and fat foods And red meat ......small changes in lifestyle management We hope there is new medication arrive in three years don't worry we will be ok
I have membranous glomerulonephritis (they originally thought it was minimal change disease but after my kidney biopsy it was changed to mgn) and I guess you could say I’m in remission because I’m only taking losartan and atorvastatin. After taking prednisone and cyclophosphamide I told myself I would never take them again if I relapsed or got a flare up. I don’t know if your nephrologist warned you about developing avascular necrosis due to the prednisone but mine did and I didn’t think I would get it and surprise I got it! Now I have to get both of my hips replaced and I recently found out I have it in my elbows 😑😑 my joints are going one by one because of my treatment for this kidney disease. I never thought I’d need to use a cane and a walker at the age of 26 but here I am.
I applaud you. You really explain very well life with nephrotic syndrome (through your many videos). You're doing a great service to all who have it (and do not know they are not alone), as well as a great job helping families and friends of these patients. Congrats! I have nephrotic syndrome, I am 50 + and you're an inspiration. Continued health to you.
Thank you so much for your very kind word! Bless you and wishing you all the best ❤️
I was diagnosed with nephrotic syndrome in first grade and i'm now in seventh grade and have had 8 -9 relapses. im grateful that i can see some of the best doctors(i live 30 minutes away from boston childrens) but still.
Whatever be happens I'm living with mcd. Leave death fear no problem with death .
We even don't know after death it's part of life
I'm 26 now I'm going peaceful. Stay positive hope on god
Glad I came across your channel! I have MCD and currently on pred + prograf (working so far). I was diagnosed at 17 and have relapsed a couple of times since, I’m now 23. I rebiopsied last month to make sure it’s the same disease and it is.
Sabrina Leung wishing you all the good health 🙏🏽
hi sabrina i am also diagnosed mcd just wanna ask how are u now
😅hi Jasmine , did you put weight on with the infusion rithmatab ❤
I have nephrotic syndrome and after six years only on two tablets a day Amodipine and Metopratol and came off steroids two years ago and sqclisporin. Still have to see the doctor so no relapse which is fun.
RedIce4 good to know there’s been no relapse!!
Jasmine Shen since I made that comment I am naw on just one tablet
That’s amazing news
lucky. i have a relapse nearly every year
I just got diagnosed with the same thing I'm 29 almost30., your videos give me so much hope! Do you by chance fb group or Instagram where we could ask more personal questions? Please continue with life updates and more videos. Thank you for sharing and helping others like myself along the way!❤
Facebook group link linked in the bio of the video my love! your comment has made my day! bless you!
@@JasminesJourney thank you so much! I just requested it. Look forward to chatting with you❤
Hello! My most recent update is now live! To get regular notifications about my videos, the easiest way is to subscribe and click the bell icon so you’re always notified when I upload a video (which is hopefully once per week now) ua-cam.com/video/v6wr0_6HKRA/v-deo.html . Best wishes 😋
my daughter has been 3 weeks on steroid..but she still got +4…but no more oedema, how long does it usually take for the steroid to kick in?
just wanna know what's your creatinine level now at present and was when you got sick btw love our positivity keep going on. I was diagnosed with wegeners granulomatosis at the age of 21 now I'm 25 and my both kidneys were damaged & creatinine level went up to 7.8 and after doing 4 times of dialysis within 10 days it got better and I just checked my blood level 4,5 days ago and creatinine level was 1.0 which is quite a normal but I was on 7 different kinds of medication when i got diagnosed and mainly devil drugs steroids for 22 mths starting from 80mg .In my pov it might not works for other but I smoke weed quite a much till now since when I got all rid of medication except steroids which that time I was only on 5mg a day and weed really works for me even doc gave me a pass on that and say you can smoke but in a right amount another major way for me is workout I spend 2hrs a day in gym always so by the help of this process I feel really good more than a normal I don't think that I'm still in remission when I got sick I was only 130 pound being 5.11 height I was so pale and skinny looks like I was ready to die but within 3yrs I gain upto 30 to 40 pounds now I'm something around 185lbs hope you don't get bore by my comment, xoxo
I love you so much
I’m 13 and have nymphrodic syndrome I don’t even want to live anymore
Chappell Outdoors there’s always a reason to live! We all get through the tough days! Don’t worry you’re not alone!
Jasmine Shen I’m in the hospital rn bc of it
Honestly things get better from hospital, I was there once and probably lost the people in these comments. I will be honest, hospital was the worst time for me and I felt the way you did but there is a light and you will get out sooner than you think
Jasmine Shen 👌🏼👍🏼
U gotta live for a better world...
i have the same thing but i dont response to steroids
Oh very interesting, luckily for now steroids I respond too
Hello
I'm also a nephrotic syndrome patient. Can I ask if you're still in steroids until today?
Hello, no I am not - I came off my last dose last May, vlog about that on this video ua-cam.com/video/afIPhfTe5vk/v-deo.html
Can MCD progress to fsgs.please reply I am so affraid.that how much more my kidney work.i am 17 years old suffering from MCD.please tell I am waiting.........😢😢
Eventually some time but rare
It take 10 to 15 years time
In this time period enjoy as much as you want
Take your food , activities,
No one live on this earth .
We are different from this planet.
We will born again
@@kdurgaprasad502 Apka kab se he konse daite krte hu
@@ImranAli-we9fw
There is no particular diet for mcd
Most of the mcd patients
Reducing their salt intake and fat foods
And red meat
......small changes in lifestyle management
We hope there is new medication arrive in three years don't worry we will be ok
@Shaime F how old are you and may I know you're medication and diet....