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

@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.

@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?

Dear Rosemary, You. have always checked in. It has been a nightmare since I was last here. Days a horse and time are all blended. I wrote a probably way too long post about 3
three hours ago. Because I needed to vent and want people to be aware and have the knowledge and especially get 2nd 3rd opinions. My Darling David passed away so abruptly on May 15th after being rushed to the hospital. He never had AFib until dialysis, and from then on, these difficulty breathing exercises worked. I was fighting to get him to the Mayo Clinic or Stanford. I know if he had gotten the cardiac ablation, he would be alive. The Drs ignored me. I could go on and on . he finally had to use oxygen, as they blatantly said, just anxiety. He was having lunch with me in the sunshine; we were sick of this leaving California. We planned to go home and be by the sea where we grew up. We always knew when we got older, we would return. So much of our family is there. That day, for some strange reason, I said David, let's be in the moment. I love you so much; I will get you home. Let's say grace or something we are grateful for. He said I told mine. We talked about our mom, how good and sweet and sang such beautiful Irish songs. We had a wonderful childhood. The leaves on the trees were shimmering. I asked if I could see those two red leaves up there. In the tree. That's so strange. His back was to it, so he couldn't. he kept taking the oxygen mask and breathing slow and deep. It was time to go to dialysis. So his helper came. He was a private, dear friend, and he loved my .brother. As we were walking to the car, David grabbed my hand and said sally can't breathe. He died like that. I screamed and said call 911 kept holding my beautiful warm cheeks, blue eyes fixed open, and tongue hanging out. They rushed him to the hospital. I hated that they had released him 15 days by sending a letter. Not one doctor would talk to me. The letter was from a company called Levant LLC. He's gone, and as I am doing what one does to close his estate, packing and hiring a law group to guide me, although he has a trust, I went to get a few copies of his death certificate at the county office. This lovely woman said this is so odd. There is nothing here. She said she had worked there for 20 years. Shea asked me the name of the funeral home. She said I know them. Let's call them and see what they know. Would you like to? She could tell I was shaken. The funeral home said they couldn't get any death certificate because no doctor had signed it. The woman from records took the phone and asked her who she had spoken to, and she hung up. So the bottom line is the doctor would not sign because he did not know the deceased history; although my brother's records are all online, the primary physician, who I know very well, seems to. Not be answering his phone. The county coroner had to be called in. He wouldn't sign and ask why a doctor didn't sign this. So I went home, called dr G, and told them to have him call me and say why, then I called the county coroner's office. It feels surreal writing this. A woman answered. I told them why I was calling, and she asked for my brother's name. She didn't even ask for my date of birth. Yes, I will explain it as best I can. It seems that the county coroner investigator since your brother has other comorbidities. No doctor will sign because they really can't determine the cause of death !!!! I became both sad and angry and very suspicious. I told her everything he went through at the hospital everything. She said she would handle it. She is calling dr Glover again. She had called him today, also. I figured out why I called the funeral home and asked if my brother had been cremated. Which I thought he already had. She said no, we can't yet. Good sass has been lying in a clicked bag somewhere. I have the right, and I am demanding an autopsy; please, under no circumstances is he to be cremated. This is enough. It was 616pm, so everyone was closed. I am calling the coroner early tomorrow. I left a voice message. I thought about this, but I have to because I know. I. am now at war. I sound crazy. I have so much proof, and they know what they did; it is all in this letter, and when Dr. Rainbow finally talked to the cardiologist, I had a plead and beg. I asked him if he read my brother's records, and he was rude. Nope, don't have to. your has nothing wrong with your brother, just anxiety,
and the letter in my hand is damming to the hospital. Have you ever heard of a company called Livanta LLC, a hospital subcontractor that Medicare pays them?
I'm sorry for the long-winded answer. I would love to upload the letter, but I know this is going to be a tragic event.n down and only 75, I'm already worn. I dont sleep I have to take care of myself. See, it is 4.12 am, and I am wide awake. So i will stop
I send you so much gratitude for reaching out and helping people. With my sincerest and Respect
sally Catalana

@sally86, I am so very sorry to learn that your dear brother has died. I wish that I were nearby so that I could wrap my arms around you and embrace you in a big hug to let you know that I care. I hope it is okay that I said a silent prayer this morning when I saw your message. I asked for strength for you as you go thru the complicated legal processes that you are facing, and for comfort in the future. You have been a good sister, and he knew it. I trust that you will always be able to treasure your beautiful lunch on the beach. ❤️

Sally, I hope that by the time you read this, that you will have found a resolution of the legal paperwork. Are you trying to do this alone? I don't have experience with the death certificate problem, but I would encourage you to consider getting some legal help. This seems like it is a puzzle that is beyond your means currently as you are in the midst of your loss and grief.
I'm thinking about you.

Okay, so I don't know if my post will get deleted because it does not follow conventional wisdom and my specialist didn't even ask me how the hell this happened, but....

I have stage 4 (late) failure at 22GFR. I've had kidney failure progressing over the last 10 years from damage to my kidney from Vasculitis and inflammation. My doctor set me up to get prepared to be a dialysis patient and to get on the transplant list once I lost 2 more digits on my function. He told me he believed this level of non function was my new normal and to prepare for the stage 5.

I figured what have I got to lose at this point, so I followed everything they told me about salt, potassium and which foods to avoid. I also went shopping for a herbal kidney supplement and started taking this supplement along with eating a full bowl of blueberries every night. I did this every day for 2 months and even bought some creatine test strips just for the heck of it. After about 7 weeks I tested my urine and found I was on the last color of 4 colors of kidney failure advancement. But I kept up the routine and eventually a few tests I was on the 3rd color (with color 1 being normal). I took it as a good sign but it was time for my checkup and I did my blood work, went to the doctor and he talked to me more about our plan for eventual dialysis. Then he looked at my record and said "Oh, by the way, your kidney creatine level went back to 2.2 from my 3+ recent readings. This means I went back to my 2014 readings (6 years ago). He didn't make much of a deal about it but told me I was back at early stage 3 now with this test. I don't think he believes I got a good test because he wasn't that excited. But I am... The home test I have since moved from the 4h block (the worst reading) to the first block (normal). I had my wife do the test and compared the sticks and we are the same color. Her kidneys are in perfect health.

Were is this leading? I think it's leading to me finding out I'm out of level 3 and closer to level 1 or 2. I could be even better but who can rely completely on a home test strip. Now what is happening to me defies everything we know about kidney failure and the progression to stage 5. Am I getting a miracle? I'll have to wait for my next checkup to know but the home test strips show me at totally normal function right now.

I'll tell you I've prayed and prayed for a cure and it didn't seem to help. This past Chistmas in church we exchanged cards with a prayer need and on my card I asked for Kidney health. I then did my regiment of taking a supplement called Premium Kidney Cleanse Supplement by Sunergetic (on amazon) and I eat that full soup bowl size serving of blueberries every night. The blueberries are not a snack, it's a bowl full. Between my prayer request, this suppliment and this supplement I truly believe I'm headed in a different direction with my kidneys. Prayer is answered but not always in some magical burst of light through the clouds. I think God answered my prayers and set me on this path that is healing my kidneys. I also take Turmeric Curcumin, Cinnamon (these block inflammation), OmegaIII, Resveratrol (alleged to activate your longevity gene), and COQ10 every AM with Cinnamon Toast. I also take 500MG of Niacin which produces a very unpleasant flush sensation. The flush is blood that runs through your tiny veins that gives your body a light headed heat rush and it's no fun, but the kidneys are about blood, yes? I can't tell any of you if this .. any of it, is changing me but think it is! The herbal supplement I take has hundreds of reviews of people that claim it improved their kidney function. I took it to be a lie... but now I'm not thinking it's a lie.

We all suffer some kind of base for our failure and maybe mine is different than yours. But I was told there was no chance of getting better. At this moment that seems untrue. If anyone would like to follow up with me, This is my real name and you can find me on Facebook. Send me a friend request. I know first hand what you folks are feeling. I see some hope now.

Dear Sir /Madam,I am having proteinuria and haematuria since 2weeks feeling nauseous,headache,loss of appetite, metallic taste in my mouth and tired ,also cramps in my legs. J feel sick to death,my urine smells very strong .doctors say Imy kudneys are fine but I feel they are failing. Is there anything which can prevent proteinuria and haematuria that doctors give to patients to ease the symptoms and to prevent nausea and feel better? My gfr was 79 then 89 and creatinine was 61 then 67 but I feel sick everyday. Can someone give me some ideas please .I am 55 years old