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

@virginia2020 If you have Zoom or facsimile loaded on a cell phone, tablet, or computer, you may wish to consider "one on one" televisits or telehealth care. Mine is with Mayo, and I see my renal dietitian every 3 months. She uploads all sources of material for me to retrieve. The best part about mine is that she encourages me to contact her in the intervening months should I have any questions,

Wow! Thank you for this information!!!!! Yes, I'm back to school full-time. I'm absorbing so much and want to learn as much as I can. And that is the Point: As you said, one's team is of primary importance. Unfortunately, my brother did not team up until I had to stir up some complaints in a polite, assertive way. It's so important, especially in the web of tangled medicine we currently Have. I am going to check CORE out now. And still searching for a better nephrologist.
Thank you, Marye 2. I hope your husband is doing better as well!

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.

Thank you so much, Rosemary. I slept all day, 12 hours. Yes, my son is coming over tomorrow because I can feel the physical and mental toll on my body. He is coming to help me find legal help.
I just made sure to eat and drink a lot of water.
You are so kind, and I appreciate you saying a prayer; I am praying so much to let go of the anger. I'm simply worn out.
I thank you so kindly. My warmest regards
Sally Catalana

My husband has stage 4 kidney. His nephrologist hooked him up with Circle of Care and the nutritionist has been working with us. There is a nice online program (freebie) that he inputs meals and we know the numbers of the nutritional values. He has to stay off of tomatoes and potatoes as his potassium is high. He has been very compliant in sorting out the diet. We have made small changes: adding a salad to dinner, eliminating beans, avoiding large meals. They also have a therapist and a direct line to the Dr should you need assistance.