Introducing myself

[edm101]

Hi, wanted to introduce myself. I have CKD stage 2 due to post-infection inflammation. Looking to stay healthy and live a long and healthy life. Hope to connect with others who are dealing with this disease.

[userotc]

Most on here have later stage ckd eg 3 like my mum. To achieve your stated aims including manage early stage ckd, Nutritional Therapy is likely to be the best way forward.

[edm101 in reply to userotc]

yeah. I am getting healthier in general just by following a diet for my ckd. I was overweight and limiting my protein and sodium intake helps in losing weight also.

[userotc in reply to edm101]

It sounds to me like you are following a restricted diet more akin with later-stage ckd. Many observers believe that's unnecessary at early stage eg link below for protein. We have not yet severely restricted my mum's diet (within a Nutritional Therapy protocol), for overall health reasons including general nutrition benefits, avoidance of sarcopenia etc.

You may be losing weight in the form of muscle rather than fat so again a qualified Nutritional Therapist specialising in weight loss based on nutrition science may help.

ncbi.nlm.nih.gov/pmc/articl...

[drmind]

WelcomeEven though you're considered early stage CKD. I'm sure you will find others on this forum with whom you may share

Experiences. Good luck

[edm101 in reply to drmind]

Thanks. When I was diagnosed, I felt like it was the end of everything. I didn’t know the difference between stages so to me it was all the same. It really was scary. I felt a little bit better when I learned that I am in early stage. The point is that my experience has led me to connect with the ckd community and remind myself that I do have this condition and that I have to take care of myself and also support others where I can.

[drmind in reply to edm101]

Of course. It's scary to find out we have any medical condition. By joining this group, you will learn so much by sharing experiences Whatever stage you're on, there's so much to learn and share

[Carpeaux]

Hello. What symptoms have you experienced, considering you’re in the early stages?

[edm101 in reply to Carpeaux]

My experience has been asymptomatic. The disease was found by a clever doctor who spotted some nuances in my blood tests which led to a series of examinations which ended in a biopsy. From time to time I notice excessive foam in my urine as a result of proteinuria but it goes away after drinking a lot of water, which results in a clearer urine and hardly any bubbles. These levels of foam have become my number one concern and I use it to monitor the amount of water I am drinking.

[Ballspinner]

Yes, drinking more water and following a low sodium diet and avoiding Nsaids and using Tylenol for pain are all recommended for Ckd patients. I was scared, too when I first learned I had PKD. I was in early stage and started seeing a nephrologist yearly. He guided me with meds for borderline high blood pressure as I slowly progressed and I learned a lot from the PKD Foundation. A great resource is kidney school on the National Kidney Foundation website. They also have Peer Counseling. Good luck to you!

[edm101 in reply to Ballspinner]

Thanks Ballspinner. How has your ckd progressed since you found out you were in early stage? Have you moved to a higher stage?

[Ballspinner in reply to edm101]

My story goes way back to 2001 when I was first diagnosed with PKD, a genetic form of kidney disease. I was scared because there was no cure, only wondering how quickly it would progress . It progressed very slowly over a number of years. I had blood tests and urine tests every year and was followed by my PCP and my nephrologist, who had to change my blood pressure meds as I went into later stages. In 2015 I was probably stage 4 and my new nephrologist arranged for me to get a fistula for hemodialysis created. In 2016 I was in stage 5, end stage renal disease and my kidney function was down to 5%, so I started in center hemodialysis in October. The same month I was accepted onto the transplant list. And in December 2020 I was fortunate to get a living donor kidney transplant. I have had no major complications so far and consider myself very lucky! You should know that both dialysis and transplant are treatments, not cures, and you must be compliant with taking your meds and following diets and taking good care of yourself.

[edm101 in reply to Ballspinner]

Thanks for sharing your story and yes, you are very lucky. You are a survivor, in fact, and an inspiration to me.

[Ballspinner]

Thank you! I would also like to refer you to an organization built on hope and inspiration for fellow CKD patients and their caregivers - rsnhope.org. it was founded by an inspiring CKD patient who was diagnosed at age two and has been through a lifetime of dialysis and kidney transplants and who has given her life to holding up other patients in more and more ways, Lori Hartwell. You won't regret checking it out!

[edm101 in reply to Ballspinner]

That's interesting. I find these communities very supportive. Happy to be here and I will check that one also. Thanks.