I'm going on almost 22 years (31) living with FSGS, 17 of which has been on dialysis, it has been a long road dealing with all the ups and mostly downs of life with kidney disease. I have pretty much went through and experienced everything one can as a ESRD patient from; transplant, transplant removal (almost died), PD, Hemodialysis, Nocturnal dialysis, and now Home Hemodialysis, countless surgeries/procedures etc, its been rough.
But now I am proud and extremely happy to say that I feel amazing, after really becoming disciplined and conscious/ constant with my diet, meditation, breathing exercises etc, I have changed my life around. Really taking my time listen to my body, researching and trusting that little voice we all have, and through constant trail and error, I'm doing awesome!
Two different nephrologist have asked me what is that I do because one I look good atfer 17 years of fighting a machine (I'm going to be better lol) two, I have the best Hemoglobin levels that they have ever seen, in anyone.
My bloodwork shows its possible to feel great on dialysis, you're not alone and even though I have a life sentence on dialysis my mission is to myself and help others with my story :))
Your friend
Marcelo
Written by
celoaffect
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Welcome to the group, it was lovely to read such a positive outlook from what appears to have been an awful time but you've come out fighting and proved that with good management you can really feel well.
I to have beaten lots of the doctors odds I'm nicknamed the come back queen!! I was diagnosed in 2001 with 20% renal function even though i was born with my conditiin but didnt know. 2009 told I need dialysis pulled things back and again 2016 I was told I needed dialysis pulled it back again and stayed stable at 7.5% without dialysis for 2 and half years but now it's dropped to 4.5% and will be starting home HD after Christmas. I have done all this by following strict restriction, medication and keeping active even if it is just walking.
We need more people like you celebrating and spreading the word of how well you can do.
Thank you for sharing your story it makes me know I can deal with the next chapter in my journey.
Wow that's crazy I'm sorry to here you having to start dialysis treatment, but you sound like an awesome person, I feel like you'll be ok. If you any questions feel free to ask it can overwhelming.
Also Thank you so much for you kknd words, they really do mean a lot 😊
Diagnosis was a very aggressive form of FSGS, unfortunately this happened when I was very young (not able to truly think/research for myself, ps this was I the 90s).
All we could do was trust traditional medicine, I’ve been through so much and dialysis for so it basically put my kidneys into a dormant state and to rejuvenate/reverse kidney disease with at stage 5 (ESRD).
If I could go back in time and talk to myself around stage 2-3 I will drastically change my lifestyle; first with the diet/water (only distilled) research fasting , breathing exercises (Buteyko and Wim Hof Method are a great start).
I can go in depth more but on here (it’s a lot).
If You or anyone is interested let me know I’ll send you mine IG/FB info and we can chat there.
Stay Safe and Aware you must become your own dr. and also work with your nephrologist.
Thank you so much for your words of encouragement! You don’t know how much it means as I’m nearing dialysis myself and am scared. When I hear your story it makes me think I can do this! Thanks again. Prayer for you. God can do anything😀
Yes God can do anything 🙏🙌 and Thank you so much for your kind words they really do mean a lot. I never new how important my story was, God guided me through all those levels if hell, even deal with drug addiction, but never left my side, I never gave up. Now I just want to be happy, healthy and help others know, it will be ok 😊
WOW I thought I had it rough, was on PD for 3 years got infection had several surgeries”thought I was going to die” then hemo for 4 years high BP every time I was on machine doctors had me on 6 different BP meds multiple tests; procedures,appointmentments etc. Also hep c! Was going down hill fast finally after 7 + years I finally made the transplant list🙏2 months later I got the call for a kidney on May 23rd 2018 had transplant next day I’m 5 months strong 😃 doing great trying to eat healthy excersise and stick to the plan😀keep up the good work your an inspiration to people going through this nightmare 🙏🙏
🙂 I appreciate you man, you've been around the block aswell, I know what you've been through, I got infected with peritonitis 7 times, 5 if those times were because doctors didn't fully clean the infection/catheter smh🤦♂️
Thats awesome to hear your doing well with your transplant, the only way I can get another one is if they come out with some new drug/treatment so my FSGS doesn't attack my donor kidney or through stem cell.
Hey hows things 💪i just made 2 years post 🙏🙏🙏 im feeling fantastic my gfr is 74% cant believe it i ve neber felt better in my life 🙏 i have so much energy i cant sit down for more than 10 minutes so i have to try and pace my self 😂 ive started a goer den this summer All organtic veggies 🙏im becmimg a veggies maniac and ive found a amazing health booster i mix honey with minced garlis and spices to make a multi purpos sauce👍 Hope thing are ok with you i know how hard this can all be 💪🙏😛
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