22 yo and GFR only 50

[Gillang]

Hi, I'm Gillang, an Indonesian living in Japan. Just today my doctor said that I'm suspected for Chronic Glomerulonephritis (currently preparing for biopsy). My cre lvl in urine is 0.61, BUN 21 and as I said my GFR is 50 (50.5 to be exact). It all started when I went to have normal health check up, my dipstick test was showing a ++ and +- for protein and I was suggested to go to hospital. Then I went there and the result showed that my cre lvl in urine was 0.51. Back then the doctor told me to come again this month, and I came (on monday) to had my urine checked again. I had a USG test to which showed that the shape of my kidney is healthy enough. I also had blood test with the result I've told above. My question is, is there anyone here who is in similar condition with me (still young and probably already in CKD stage 3)? Tbh I'm feeling so helpless right now as I use to be an outdoor person and feeling like still have many things to do in this world.

[SN23]

I totally understand how you feel. Three years back my son who also has IGAN was in a near similar situation. But believe me by being careful about diet (no processed food, no red meat etc.) exercising/walking, staying hyderated by drinking enough water, getting tested regularly and staying positive and hopeful you can improve and manage well and yes also do the things that you want to do. At an EGFR at 50 you are in a good place to act to improve and slow progression. There are a number of earlier posts that have many helpful suggestions. Do explore. And if you can, do work with a renal dietician to develop an appropriate meal plan based on your labs. Best wishes and prayers.

[Gillang in reply to SN23]

Hi SN23, Thanks for replying, it kinda makes me better. Anyway how is he doing right now, I mean with his EGFR score, is it increasing, being stable, or what?

Well, I will get my biopsy result next month, so my doctor still not sure about whay kind of treatment or diet I should do until then.

Yeah, I've read some posts here, especially about CKD stage 3, it gives me some kind of hope and knowledge to deal with mine.

Thank you very much again for your wishes and prayers

[SN23 in reply to Gillang]

Yes Gillang he has improved, there were some set backs too (related to medications) but being alert to any drops in egfr and consciously addressing issues he has remained in stage 3 even though he was in stage 4 when he discovered that he had IGA. He was then 28 years old and at an important stage of his career. He has since then been promoted twice and has also completed several competitive exams as part of his career plan. I am writing this only for you to make you see that nothing stops or should stop for you and so do not be disheartened. You are very lucky that you have a doctor who was able to identify this fairly early on.

In terms of treatment my son only takes blood pressure medication and fish oil as prescribed by his nephrologist. His diet is mainly plant based with some fish and occasional eggs. He does not smoke and has only an occasional drink or so.

I am praying for you and I wish you the very best 🙏🙏

[Gillang in reply to SN23]

Tbh I am really glad when I read your comment, it really lifts up my moral before having the biopsy. It sounds like your son is quite a competitive and kind of a focus-toward-goals man, just like me 😀. Really happy to hear him having his greatest time of life, such an inspiration to make me look forward to my future.

Thanks a lot!

[SN23 in reply to Gillang]

👍👍all the very best🙏

[sylla123]

Hi Gillang .... My Husband has the same as you Rapidly Progressive Glomerulonephritis ( Which I presume is the same as "chronic" ) he took a low potassium diet .. and was on medication and he was kept healthy with this and lots of check ups for 12 years , until alas he had to go on to dialysis .. but he had age against him aswell .. he is now 78 and has been on dialysis for 3 years .. He was doing OK on the Dialysis .. until he got an infection in his emergency dialysis line , as his fistulas was not ready to use .. and from then on it has been down hill ....

What I would warn to anyone on Dialysis .. ( I wish I had been told this message ) is if you feel unwell and especially if you have "real" pain and can't move off your bed .. call 999 and get to a hospital quick for immediate treatment . which my husband did not get .. the GP arrived after a long wait .. and miss diagnosed .. telling him to try to keep moving and take paracetamol ... he actually had and infection that went straight into his blood and into his spine "Discitis " .. treatment must be immediate for recovery !

[Gillang in reply to sylla123]

Oh I'm really sorry to hear that sylla123, fortunately I'm still in stage 3 right now and doesn't have any other blood pressure neither diabetes problems. If I may know, what was his GFR when he first diagnosed to had glomerulonephritis?

[sylla123 in reply to Gillang]

I will get back to you on this Gillang, I promise, as I have to look it up and I want to be accurate ... we are going back now around 15 years .. he was first diagnosed year 2003 and at first was put on rather experimental doses of drugs .. and was checked every week .. As I am now his full time carer I have to prepare his lunch .. So I do promise and it is no trouble to go through his files .. Speak soon

Sylla real name ( Susan )

[Gillang in reply to sylla123]

Got it, I really appreciate it Susan. My doctor not giving me any medicines yet (which is good), although my biopsy result still in June

[sylla123 in reply to sylla123]

Hello again Gillang .. When my husband was first diagnosed 2003 his GFR was 42 ... But it was the biopsy that confirmed it was Glomerulonephritis .. his immune system attacking his kidneys ... and he had an intensive course of a tablet to suppress his immune system for 6 weeks ..

In those early days I / we were really just learning and it was difficult for us to understand all the terms and what was going on .. But it just seemed that the GFR jumped around like a "yo yo" ! it went up and down ... Infact we had a holiday booked for November and I asked the consultant should we cancel ? but he said no lets wait .. but then a week before the holiday he was very concerned as his GFR had dropped ( can't remember what it was) my husband persuaded the doctor to allow us to go . with the promise if any thing worried us we were to phone him on his direct line .. and then he would be intouch with medical staff in Tenerife where we were holidaying .. but as it happened nothing did happen and we went immediately to the hospital on our return and his GFR was back up and all was calm again .. !

And this seems to have been the pattern .... I started as I became to understand better to write the GFR in my diary .. and just to show you how up and down it was >>>> Year 2008 GFR February 26, May 21,August 30, December 28.......... Year 2012..GFR January 25, April 27, June 19, November 37 !

All this time we led a normal life .. My Husband was fit .. swimming 3 times a week .. walking every morning ... gardening .. he did most of the cooking , as he had been a chef in our Restaurant ...

In 20015 he got a very bad flu .. and his GFR went down to 6 and he started Dialysis ..

Look after yourself Gillang eat well , drink what ever is your favourite drink .. My husband loved his Brandy and Whisky .. just watch your potassium ... exercise and enjoy your life .. if you are young .. and your GFR is at 50 .. you have a long way to go .. Good luck with your Biopsy .. let us know how it goes ..

All the best

Susan

[Gillang in reply to sylla123]

Hmm I see, actually it seems tough for me as I have targets to stabilize my GFR (or even make it to stage 2) and not going down into dialysis stage at least until I'm 50 (which is still almost 30 years from now). I'm kind of outdoor person (who love road biking, traveling, and mountain hiking) and fortunately alcohol isn't my favourite drink, fruit juice is. But still as I have those targets in mind, I'm prepared to have really strict diet to prolong my life. Well, thank you very much for the info, I will update my biopsy resul here after I receive it.

God bless

[sylla123 in reply to Gillang]

Look forward to hearing from you in June .. and hope the biopsy result is good .. take care and enjoy all those activities ..

Susan

[Tani123 in reply to Gillang]

Hi Gillang, my husband was diagnosed with stage 3 CKD, GFR 52. He is 29. We are still trying to find the cause and getting tests done. How was your biopsy results?

[sylla123]

Ha ! ha ! just noticed what I had written .. 20015 !!! wow ! well that would be a record ! A correction >>>> 2015 .. that's better !

Susan

[Teshie27]

Do you have biopsy result by now?

Did your doctor tell you you can make it to stage 2 from stage 3?