Hi everyone. I was diagnosed with NS at 2 yrs old and continued with this crappy disease till I was 14 yrs old. That was 30 years ago and a few weeks ago, IT returned. I am reliving at 43 yrs old all the yucky feelings that plagued my entire childhood. It stinks but I at least am prepared and know the routine, which for many of you just learning about this insidous disease, is the hardest thing. There is so much hope though, this disease is so unpredictable and you never know when your last attack will be your final attack, it can cease at anytime. I had 30 years of attack free living. Dont give up hope. For now, I am reaquanting myself with living with NS. When your in the middle of a full fledged attack, it is difficult to see the light, but I know its there somewhere.
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30 year remission and its back
- By dink2061
- Posted October 29, 2009 at 9:43 am · 10 replies
- In Adults with nephrotic syndrome
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- By MelissaShuford
- Posted October 29, 2009 at 2:00 pm
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Dink2061, The light is definitely there.....its you to some of us!!!!! You were my ray of sunshine today.I hope you are feeling much better soon!!!! Blessings back to you!!!! Melissa
- By dink2061
- Posted October 29, 2009 at 5:43 pm
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Melissa it is strange. The last few days I have been doing the whole "why again" "why now thing" . Then I found this site and others and have been reading the stories. Thinking about these kids, so much like I was. They need to know that their is HOPE. That was the one thing I couldnt see clearly back then because this disease was so new to everyone. Not too many GREAT stories back then because of the inexperience of it all. I think I may know now why this has happened AGAIN now, 30 years later. And if I can show ONE kid out there "Hey this lady survived, recurrent re-lapses, physical disfigurment, cytoxin and all and lived a perfect life, I can too" then this relapse will be worth it. Kids need to know they will be normal. I didnt have that then and it was scary as hell.
- By Mikieg
- Posted October 29, 2009 at 8:56 pm
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Wow, I've never heard of a relapse after so many "decades". I've had NS since I was 1, 48 years ago but it's been with me off and on all those years.
Like you said, you are better prepared and there are new treatments we could have only dreamed of all those years ago. If something as simple as Lasix were around when I was a kid in the 60's, things would have been a lot easier.
Hang in there.
- By duker
- Posted October 30, 2009 at 7:35 am
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wow. although I am so sorry to hear you have relapsed again, you do give me HOPE that there will be a reprieve for my little girl! she got mcd when she was 2.5 and she is now 8. and after 3 biopsies and numerous drug protocols, they say she is now scarred, but does not follow the "usual" scarring of fsgs, whatever that means.
She can never go on steroids again - they destroyed her body. BUT the hope was rituximab (at NIH in bethesda, md). it gave her a total of 9 months remission so far (her last biopsy estimates she is 30%scarred - but has perfect and full kidney function).
It really broke my heart, when she was using a walker (used to be a very active kid!) and said crying "mommy, I just want to be a KID again - like everyone else". that was 1 year ago. the rituximab gave us some peace and allowed her to detox from the 24 meds she was on- worst of which was pred. Her hospital - world renouned- wanted just to remove her 2 kidneys and put her on dialysis last year. would have been a complete disaster. I fought it and them.
it is stories like yours that affirm my decision to fight to give her the gift of time. I hate the severity of the drugs - even rituximab. scary. but I would rather her have a quality of life. she had none. now she goes to school, is finally growing again. has friends. and laughs, runs, skips, and is even happy. she will battle this clearly for the rest of her life. a tough thing for a mom to realize, but at least we were able to make her smile - and get at least her later childhood years back for now.
tomorrow will be her first halloween OUT OF A STROLLER OR WHEELCHAIR!
thanks for posting. you really gave me hope!
duker
- By dink2061
- Posted October 30, 2009 at 10:39 am
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Duker,
Never give up hope that your child will live a "normal" life. As a child, I clearly remember, the disease was dibilitating and uncomfortable and stripped me of my dignity as the meds were constantly altering my appearance. But in retrospect..the scariest thing I remember was living everyday wishing I could be normal and feeling like it was never going to happen. It can very easily happen and at a time when you will least expect it. This disease is so tempermental and unpredictable and can leave as fast as it came.
I think it is awesome that the internet exists now and children and parents afflicted with this can see they are not alone. I did not have this during my childhood illness and loneliness was how I lived. Nobody understood and people just kind of looked and stared with that "poor thing, she must be sick stare" Kids need to know that this can merely be a "bump in the road" to a long, healthy life. Even now, all these years later, I am trying to see the good in this and if helping other parents and the KIDS themselves in KNOWING there IS LIFE before, during and AFTER NS, then these new attacks will be ok for me to handle now. I am a big believer in that THE POWERS THAT BE give us no more then we can handle and only enough to GROW US stronger. Trust me, your children will be more compassionate, stronger adults for what they are going through as children.
- By MJKN
- Posted October 31, 2009 at 8:51 am
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Thank you DInk2961 for your bravery and stoicism.
You do bring hope to families. I would be curious to hear what you thought caused the relapse as my daughter seems to be doing well now at 14.
You can email me.
Keep up the good fight.
- By dink2061
- Posted October 31, 2009 at 9:05 am
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It came like a bat out of hell!! Honestly, I wish I could say that it was that handful of cashews or vodka and ginger ale or that bit of a cold I felt coming on. But truth be told, I was living my life no different then the last 30 years. I have 3 kids, a hubby, pets, go to school. Who the hell knows. The dr's are a bit baffled how I won this lottery twice!!
Some people get this from other illnesses or allergic reactions. Me?? It came on as a child out of nowhere and now again at 43. I lived and will continue to live a beautiful life. A couple of bumps in the road is ok. Just know that your daughter has A LOT of normal living ahead of her and someday she will look back and know that her childhood illness helped define her. Trust me on this one
- By MJKN
- Posted October 31, 2009 at 9:18 am
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I will and I hope you are getting the best care possible-you deserve it. Let the family wait on you a bit.
- By PatriceM
- Posted November 1, 2009 at 11:24 am
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Hi Dink:
Sorry to hear about getting NS again. I'm 53 and was diagnosed this year for the first time with no "obvious" reasons for getting it. I've been on prednisone for 2 mos now. Took some time off work... but will be going back to work tomorrow.
Will you be treated with pred? Hang in there. It will get better.
- By dink2061
- Posted November 1, 2009 at 12:03 pm
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Thanks Patrice, I presented with severe edema and protein in my urine so I went to a neuphrologist right away. I am very lucky as I was referred to a great doc! After hearing my history he wasted no time with the prednisone and lasix, unfortunately, it is taking a while to kick in. He wishes to add another med, after the results of my renal biopsy. I have low blood pressure so he needs to be careful on how he treats the edema.
Im ok. Alot of this is "old hat" to me, one I wish I didnt have to wear ever again!! BUT......it is what it is, I beat it once and I will do it again. The aggravating thing for me was that I had just started going back to school and taking some heavy duty courses for nursing. This is putting a wrench in my step! We all know how "time wasting" this disease is.
But....with all this said, we will all be ok. Its a "bump" in the road on our wonderful journey called life. Sometimes, some of us just need to take a lil detour!!!
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