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

Posted by anet @anet, Oct 21, 2019

My husband who is 75 is in stage 4 kidney disease according to his gfr. His last Gfr was 27. That sounds terrible to me, but his nephrologist says he is stable. He is not diabetic. His creatinine is 3.2, albumin 4.1. Phosphorus, sodium, calcium, potassium are all normal. His blood pressure is controlled by medication. He exercises by walking one and a half miles every day. He has two heart stents and takes cholesterol medicine. He has shortness of breath on occasion, but still does all of his normal activities like light yard work, fishing, dining out, going to church activities. I do think he sits too much, but try not to nag. He is not good about eating healthy, but is getting better. Maybe I am just worrying too much. Would like to hear from others in this stage of kidney disease.

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annbelle | @annbelle | Mar 19 11:34am

In reply to @pakyun22 "I got swollen eyes though, can you use dash for the soup? cant find soup ideas..." + (show)

just make the soup, replace the salt with flavoring, garlic , mrs dash, pepper etc etc

sally86 | @sally86 | Mar 24 8:09pm

In reply to @colleenyoung "Hi @s6885, Your original reply was very informative. Your experiences as someone living with stage 4..." + (show)

Hello, sorry for not replying to my Brother, who had just started an analog at the ER when I wrote to you. As I might have said, he was diagnosed with nephrotoxicity from so many antibiotics from knee replacement. Now, as of 6 days ago, he had declined rapidly .. when he was rushed to the hospital to go on dialysis, he had three ventricular fibrillation. So, he has difficulty catching his breath, especially at night. He gets pretty scared and often turns into
panic attacks. He has been given Valium 5 mg for this.
Then, if this was not enough, Sadly, he fell trying to get from his bed into his wheelchair and Fractured his HIP on the same infected left leg side. So now he is at UCSF, and they told him gently with compassion all that can be done now is a whole leg amputation. He has met with four teams of Drs. cardiology, endocrinology, orthopedics, and Hospital Team.
He was admitted on March 19th. The plan was to have surgery yesterday. I have met and my brother numerous with Drs from each field. As one would expect, the plan kept evolving, as this was such a complicated surgery, including the hip. This morning, they. It was decided to wait. So we have my brother, and I have been through every emotion, from resignation to acceptance to happiness. This morning, I am finally heartbroken for him.

celia16 | @celia16 | Mar 26 10:50am

In reply to @sally86 "Hello, sorry for not replying to my Brother, who had just started an analog at the..." + (show)

I’m so very sorry about your situation. How are things today.

sally86 | @sally86 | Mar 26 4:36pm

In reply to @celia16 "I’m so very sorry about your situation. How are things today." + (show)

Hello, Well, Now he is having difficulty breathing, and sad fluid is seeping into his lungs. I called Maya's clinic, and he has an appointment in May. I called today, and they said they could take him tomorrow, but we are in San Francisco. I'm calling again tomorrow; I have to be sure he can fly and can't catch his breath. I went into hospital today. They were going to discharge him. I stopped that and spoke to all his DRSs.They are pulling a little more fluid today, but this will continue. I've got to get him there and aim very worried
Thank you for asking

annbelle | @annbelle | Mar 26 5:53pm

In reply to @annbelle "just make the soup, replace the salt with flavoring, garlic , mrs dash, pepper etc etc" + (show)

add veggies no salt liquid beef broth, bring to boil then simmer til cooked

annbelle | @annbelle | Mar 26 5:57pm

In reply to @rosemarya "@pakyun22. I don't have a rcipe for onion soup, but did find these links that will..." + (show)

i add extra pepper, which is very good for u

celia16 | @celia16 | Mar 26 6:38pm

In reply to @sally86 "Hello, Well, Now he is having difficulty breathing, and sad fluid is seeping into his lungs...." + (show)

Discharge him? So, they don’t think he needs the surgery now?

Rosemary, Volunteer Mentor | @rosemarya | Mar 26 8:21pm

In reply to @sally86 "Hello, Well, Now he is having difficulty breathing, and sad fluid is seeping into his lungs...." + (show)

@sally86, I want pop in and suggest that you look into a medical transport. Talk to the doctor, the social worker, your insurance...

Before my transplant, I was in local ICU and needed to be seen at Mayo, Rochester because of my particular complication. I was in critical condition and had to be flown there. The local liver doctor had been in contact with Mayo Liver dept. and after they agreed to accept me, my local pre transplant coordinator contacted our insurance company who approved the transport. They and the nurse coordinator made all of the arrangements.

Like your brother, I had a scheduled appointment with Mayo. But I missed it because I was in ICU.
I encourage you to have his own doctor make contact with Mayo. Can you talk to his doctor first thing in the morning? - Or tonight if his condition warrants it.
❤

Lynne Marie | @lbrockme | Mar 28 4:27pm

This must be so stressful for you. I'm praying for continued wisdom. Perhaps you can Explore medical transport as opposed to discharge etc. You may have to advocate for this.

Rosemary, Volunteer Mentor | @rosemarya | Mar 29 6:18am

In reply to @sally86 "Hello, Well, Now he is having difficulty breathing, and sad fluid is seeping into his lungs...." + (show)

@sally86, I want to check in this morning and let you know that I am thinking about you and your brother. Did he get relief after the paracentesis procedure (pulling off the fluids)?

Has he been released from hospital and will he be traveling to Mayo?