IGAN and FSGS

[Scully79]

Hi there

I’ve recently been diagnosed with CKD with eGFR at 30. Biopsy showed both FSGS and IGAN. Not sure what the future holds now… I wonder how quickly things will progress? So much to learn about kidneys.

[Bet117 NKF Ambassador]

Welcome Scully,

You are not alone and among friends here.

First thing to remember is to see the positives rather than the negatives.

This is a journey and process.

Key points are to have a medical team who you are comfortable with, who are thorough and explain things in basic language. Additionally, that your team members are willing to share visit summaries and speak when necessary so that everyone is on the same page.

Your nephrologist is your go to person.

Medication, diet based on your labs which is also commensurate with any other medical conditions that you have are very important to slow progression and get this under control.

If you have not seen a renal dietician who will look at your labs and make food suggestions, portions etc. which are both appetizing, nutritious and kidney friendly. Ask your nephrologist for a referral or call your hospital and see I the real dietician will meet with you.

With any autoimmune kidney disorders, such as the IGAN and FSGS, it's also important that you minimize or avoid any foods which cause inflammation such as sugars as it can initiate a flare up. Your dietician can help you there.

Red Meats, processed foods, excessive dairy, high fat or fried foods, dark colas are not beneficial. Limit your sodium intake to 1200-2000mg daily.

Avoid NASID pain relievers and aspirin.

Each person is different, so bear in mind that what may work for one patient may not for another.

I have walked your walk as I am a Membraneous Nephropathy patient which is the sister disorder to yours and a close friend of mine is an FSGS patient who are now holding our own.

Please reach out to me at any time as I would be happy to share and support.

Stay Strong!

Bet

[Scully79 in reply to Bet117]

Thanks so much for your support Bet, and for sharing some advice. I hope your kidney journey is going ok for you. Nice to be able to reach out to people who have gone through something similar. I feel mostly fine. Can’t sweat the unknown, but wish I could wave a magic wand that could tell me what I’m in for the next few years Thanks again

[Bet117 NKF Ambassador in reply to Scully79]

No thanks ever needed, we are all in this together, Scully,

We all wish that we had a crystal ball at times, but for now, know that this is a process.

You have a diagnosis, which is a start. Go one step at a time and take the necessary steps to keep things from progressing. It's a life style change as well.

Let your loved ones and friends be there to support you.

Reach out at any time, here or via private chat.

Stay Positive!

Bet

[bumblebee_tuna]

Did they talk to you about Sparsentan?

[Scully79]

No? Haven’t heard of it.

Specialist says they’re not sure how quickly it’s likely to progress due to dual diagnosis… time will tell. Taking a few other things they’ve recommended