CKD stage 4 FSGS

[worried_mommy]

My 20 year old son has CKD. He had a biopsy last year and was diagnosed with mutated primary FSGS. Tried every medication to try and slow it's progression but apparently his condition is resistant to steroids. He has a eGFR 18. I've heard people tried celery juice and Chitosan supplements to improve eGFR. Anyone try either or both and have good results? Thanks

[Charlene_Coxhead]

Your bound to be worried and it's only natural. I was diagnosed at 21years old with a egfr of 20, so slightly older and slight more function bit not a lot. This was in 2001. I was told I would need dialysis by 2009 but I was so determined that I wasnt going to be on a machine. There is no science behind delaying CKD and not even sure if it is possible but I made some changes and not sure if that helped or not but I lasted another 10years dialysis free. I started home haemo in jan 2019.

I have never heard of drinking celery juice or taking Chitosan supplements but all I would say is before you try anything consultant your renal doctor as herbal supplements arent great for renal patients. I made the mistake there and collapsed. It was a dandelion and thistle tea but it dehydrated me. This was back in 2010 but luckily I bounced back.

I do drink 15mls of apple cider vinegar and 1tsp of honey in a little warm water as it helps with inflammation and suffer with gout and i checked and the consultant was fine with this.

So what i did but I'm not saying it will or wont help but just from my own experience.

Stop drinking all dark soda, eg coke, pepsi.

Reduce sodium intake so no adding salt to your boiling water or to the meal use herbs and spices instead. What for hidden sodium in stock, soya sauce, tomato ketchup and other condiments.

Try and avoid jarred sauces and pre packet soups and canned soups and even canned vegetables. If your going to have tinned fish like tuna make sure it's in spring water and not brine.

Avoid processed foods like sandwich meat sausages and burgers. Maybe start to make your own that's what I do and then you know exactly what's going into the foods.

Also he needs to spot takeaways and ready meals as monosodium glutamate is the devil in disguise.

Maintain a health weight so if his BMI is to low he needs to gain weight and if overweight lose it.

Try and maintain a health blood pressure and this can be achieved my following the above and trying to stay active. I'm not saying he needs to join a gym or go running unless he already enjoys these things but a 15 minute walk several times a week can really help and then slowly increase it. Anything that raise his heart rate a bit.

Now i know this is a lot of dont have dont do but he doesnt need to live like a nun just make the tweaks and you never know he may be one of the lucky ones like me. If he doesnt have a renal dietican then insist he gets one. Some people need to reduce potassium and phosphate in their diet but I'm not going to talk about that as dont know his blood results and no dietican.

Hes 20years old and a hard age to be diagnosed but it doesnt have to stop him. I became a black belt in tae kwon do and then a second degree black belt all after diagnoses and was a solo skydive with 209 jumps. Dont let home give up he will have rough days and be grumpy sometimes and take it out on the ones he loves but he wont mean it. Just remember we are here to support you as I know from watching my parents ots really hard seeing your baby struggle and it doesn matter how old or young he is he will always be your baby.

Take care

Charlene x

[Irelandy in reply to Charlene_Coxhead]

That was a great response, very positive and supportive for everyone, thanks and good luck.

[Charlene_Coxhead in reply to Irelandy]

Thank you that was very nice of you to say that and glad to help in any way possible

[Bassetmommer NKF Ambassador]

HI Worried,

Charlene gave great advice. There is no miracle cure and supplements can be more dangerous than helpful. It seems now that kidney disease is becoming more frequently diagnosed that all sorts of "snake oil salesmen" are coming out of the wood work. Try to have him follow Charlene's suggestions. Take him to a renal dietician. We are here for you both so ask away...

[NewStartIn18]

I had secondary FSGS. It progressed slowly at earlier age, but I could never stop the progression. I tried many of the things Charlene mentioned and kept the decline fairly stable in my younger years, but eventually had to pull the trigger for transplant.

I suggest working working with your sons nephrologist to get him on the transplant list so he can start accruing time for when he may need a kidney.

I wish your son the best

[Kbressler NKF Peer Mentor NKF Ambassador]

Dear Mommy, First of all I share your concern I to have FSGS diagnosed in 1984. Three years after diagnosis I received a kidney transplant from my brother. That was 32 years ago and I have had a great life and career and am now retired. I tell you this to offer you and your son hope. It is my opinion that he should seek, under direction of his Nephrologist a preemptive kidney transplant. Doing so now while he is relatively healthy gives him a greater chance of not having to undergo dialysis. Blessings to you.

[KidneyCoach NKF Ambassador]

Yes I was also going to add once EGFR hits 20 or below its time to get evaluated and on transplant list. Look for a living donor from family and friends.

I love all the other advice. I will also add talk to your nephrologist about seeing a renal dietitian which could help with an individualized plan.

Take a look at kidneyschool.org and try the book "HELP! I need dialysis". You can find it at homedialysiscentral.org or MEI Medical Education Institute. It's only $6 and so worth the price.

Blessings

[Cbdhappy]

My 24 year old son was in stage 5 in August 2018. I began to give him CBD oil, today his doctors and myself are all(his doctors are at Hershey Medical Center Penn State) amazed his counts are all normal and GFR is 58 when we started GFR was 19. He was getting ready to start dialysis now we only see his kidney doctors every 6 months(still do blood test every 2 months). I don't know if it would help him but if it doesn't hurt no reason not to try it. We took 35mg a day you have to stay with it. He uses the oil that goes in your mouth under the toug.

[SN23]

I can totally relate to you as a mother with a son who has CKD. My son was also stage 4 of IGAN when he was diagnosed. Have tried all kinds of diet etc to help him but very recently joined this group on Facebook called Natural Kidney Journey and have begun plant based whole food diet and their overall protocol that seem to be helping many. The founder himself came out of dialysis practicing the regimen. The group is full of people who have improved their lives. I am hoping that my son improves his numbers too following their way of living🙏 You can take a look and see if it is appropriate for you. My prayers and best wishes.