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

My husband is at stage 4, with high potassium and phosphate levels. We finally found a powder that he can make into a drink to manage the potassium. Lokelma gave him side effects due to heart meds. Our kidney dr referred us to Circle of Care (paid by Medicare) and so far, the services have been outstanding. We are using an online app to manage the renal diet, particularly potassium. He is missing potatoes and tomatoes, but generally not too many other changes needed.

@marye2 There is a community program in the LA area called Circle of CORE (UCLA) that is an advocacy group that makes sure kidney patients receive the best care possible. In any event, as long as your team of medical personnel include at least a nephrologist, a dietitian and a PCP, you should be in good hands.The most important factors are to learn as much about this disease and to follow up on your labwork regularly. We all have to watch the potatoes and tomatoes, but it sounds like you have a good start.

Maybe I misspelled it, but they have been terrific so far.

Would you will wiling to share the name of the powder your husband uses to control his potassium? I may need that too and would be nice to have the name.

Oh, did I try?!!!! I might have found my new calling as I was a nurse and happily trying to travel with my Husband. Don't worry; I will continue to do everything. I dearly love my brother, as I have said before; shame on Dr., especially his primary. But I am 75 and living in the present. UCSF played their game and blocked me. Mayo was willing to take it home. Their egos were hurt. So, he is in a skilled nursing facility due to a fractured femur. Of course, there was no operation; he was discharged after five days. I spoke per sally to Mayo, and they said they just requested our courtesy.
I never answered back, so he is doing dialysis three xs a week, and I am trying so hard to find a place to train for Home Hero. Like in the next stage, any signatures are happily accepted. I have gotten a little backup, which is quite costly. I wonder if I mentioned my dear husband, and I cook all his meals. There is no such thing as a renal dietitian. I do not want to keep chatting; I am taking up many other dear options time. The good thing is my brother was a well-known chef, and our whole family loves to cook. I have been into ayurvedic medicine for years, so we are the three. I am so looking forward to seeing my little grandchildren tomorrow. I guess today, there is a sense of either exhaustion or acceptance of resignation—a burnout. I thank everyone for their support and hope that as I get through this trauma, I may help others. On a funny note, Michael and I were supposed to be hiking the Dolomites in June.
Stage. Well, our training went by the wayside. So we save tomorrow for the next fight and stay steady. No choice,

No, he is in a skilled facility getting dialysis 3xs a week. I am so disappointed that UCSF is trying to do this.
1. appointment with Stanford Hospital. He will need a cardiac ablation to live, so I'm on that
2. I am desperate to find home hemodialysis, and so far, UCSF honestly has not answered me on My chart.
I have joined groups and searched all over the Bay Area. He goes to Davita on a stretcher, gets picked up in a van, and is carried in. We are on week 2. He gets picked. Vita does not train. I am fully aware of the dangers of three xs a week. I'm just praying tomorrow that I can find someone. Anyway, thank you for letting me ask and vent.
He's showing depression, which is. Not like him.
Anyway, I won't give up. I love him dearly. Going to bed, thx for helping and being supportive. It's so helpful.

Yes, the fluid was removed. My brother was discharged from the hospital to a skilled facility and was taken to Davita on a stretcher in a van this week. I have called Stanford; I'm worried he needs cardiac ablation to relieve continued shortness of breath. Mayo spoke to me and told me, out of courtesy, to ask for a referral to Mayo, and they said they would. Accept. The social worker and discharge planner Ignored the request.
So, crossing our fingers, we will make the appointment for his heart on May 17th at Mayo. I am being ignored for speaking my mind. How dare I. It's like I am a student in school being punished for telling the hospital what mistakes might have been made or oversights. As a retired nurse, I should have remembered—the egos. Thank you for all your support. It helps me so much to stay strong.

I am so sorry. This sounds like an incredible responsibility. Sending many positive thoughts your way. I’ll look for updates, realizing how busy and exhausted you must be. Bless you!

I am stage 4 and so far kidneys are stable. I’m 69 and I’m worried about my kidneys. I need help with the type of meals I can eat. I know only a renal dietitian is what I need but I can’t find one in Richmond Virginia. If anyone knows any please let me know. Thank you

@sally86, Have you learned whether your brother will be going to Mayo for his appointment as you requested? If he gets the appointment, will you be accompanying him?
How is he coping with all of the dialysis center confusion?