Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)

@cehunt57
Thank you for caring enough to reply . I am so pleased that your husband is fine.
Believe me I am studying CKD stage 4 . I am on a special diet etc.... Have just returned from having another blood test and praying the results will be ok.
The kidney disease I have is genetic...it is called Thin Membrane Disease. My sister had it and now her daughter has it. But this report of cancer in my left kidney came out of the blue.
Blessings to you.

@goibib it sounds like you are working hard to tend to your Stage 4 CKD. Good for you! But the “report of cancer” in your left kidney is something new? Is there a definite cancer diagnosis or are you waiting for test results and more scans? Waiting is hard! I’m praying for you and for you to be showered with God’s Blessings!

My husband is quickly approaching dialysis with GFRs of 11,12...they have scheduled a fistula procedure for him as apparently is takes a couple of months to heal before it can be used for dialysis. My GFR is sitting around 29. I've made some changes to my diet as I'm to watch phosphates, potassium and protein - but I need to do more. Drinking water is a challenge for me. I find this group helpful and hope you will too. Vicki

@cehunt57

Yes this report of the cancer is completely new. The Nephrologist referred me to a Urologist and because I also have Angina he doesn't want to do something immediately. The growth is 3cm. According to him kidney cancer can be a slow grower (or aggressive 🤔) so he will be seeing me on the 16th of November. Today I went for the blood tests. Am waiting for the results and his reaction to the results.
Thank you for your prayers. I will be praying for you too.
Blessings

Many years ago, I had a small mass on my right kidney. The mass turned out to be cancerous. My urologist sent me to an "interventional radiologist" where he did cryoblasia on my kidney, or froze the mass which eventually disappeared. I had annual scans done for the next 5 years and I was cleared. This lesson may be a solution for some, but not all, but it may be worth talking to your doc about.

@collegeprof
Thanks for the information you sent me. I found it extremely interesting and am going to follow it up . I haven't heard of it before, however I certainly intend to do as much research and asking as I possibly can.
So pleased to hear it was successful with you.

I am 88 and in your husband's boat. I do PT three times a week and get off my duff to battle getting bedsores on my rear end. I have been looking hard for a virtual support group for kidney discussions. I was in a group with one of the 'kidney foundations' but it has about 100 members and we spend most of the time introducing ourselves every week. Like you, I have a lot of anxiety about kidney disease. Dialysis is a pain in the you know what and there does not seem to be a better option/. I really hate waiting around to die with a tube in my belly and waiting around for the next pandemic. I am a fan of UCLA Health for a ton of years but they 'farm out' dialysis so it seems there is little research focused on. To be honest, I have an 'ear full' of information pumped into me but have no peers to talk with.

I hear the concern in your words, and the hope you can help your husband take positive steps in managing his kidney disease. I also feel the pain you are experiencing. My husband is 78 years old, and his GFR tested 15 last week (time to prepare for dialysis). He has not make good health choices over the years, culminating in denial and depression. He will not change, nor will your husband become more active. You can help yourself by forgiving him, loving him and doing the same for yourself...forgiving yourself and loving yourself.

Have you tried walking exercising and watching what amount of feed he eats

Can you share more about your diet? Thank you!