Newly diagnosed with CKD (Chronic Kidney Disease) and terrified

Posted by nightwhisper @nightwhisper, Jan 21, 2024

Hello. I'm looking for some comfort because what I read on the internet about kidney disease is very bad. I had blood in the urine from the glomeruli of the kidneys in 2011 but we monitored it and I was doing very well things were quiet. Now suddenly it started to rise my creatinine and the percentage of my kidneys working is low as my nephrologist told me. I think I'm in stage 3 kidney disease. I'm doing tests all the time and I'm afraid that every time I go for blood tests my creatinine will be more and more up and I can't handle it all.I'm so scared it's progressing fast.I always shudder at illnesses and now something so serious is happening to me,it's a nightmare.I thought I was doing fine,I don't know what this new kidney problem is.Can can someone give me some advice to get courage for my disease? What would you say to someone who has just been diagnosed with kidney disease and is panicking? I am very sad and scared, I feel like my life is over and I am worried about my family how will I leave them .

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seapen | @seapen | 11 hours ago

Contact a dietition who is kidney certified. I did that and she is very helpful. She gave me a Gold subscription to Cronometer app and she monitors what I eat from that. I am 3a ckd. My PCP would not give me a referral, so I looked at the Kidney Foundation website and found the only kidney certified dietition in Maine. It is completely covered by my insurance, as many visits as I want. She is 3 hours away, so we meet via zoom.

Cheryl, Volunteer Mentor | @cehunt57 | 9 hours ago

I have chronic kidney disease (CKD) stage 4. I’ve been diligently following this thread but it is getting tedious. It originated in 2022 and is now 10 pages long. I feel compelled to try to summarize all the great information.

* Kidney disease is assigned a number and sometimes an alphabet letter depending on the amount of function the kidneys have.
* Lab tests (blood & urine) plus formulas are used to determine the level of functioning. Regardless of the particular tests used, it is the trend results overtime that is important. A single test (type or result) isn’t all that helpful.
* MANY factors affect the above two things: genetics, age, co-morbidities, medications, diet, hydration …..
* Treatment depends on all the above. There is no such thing as “one size fits all”. It is best to find providers and specialists who are willing to look at the whole picture and collaborate with other colleagues to develop an individualized plan to meet the patient’s needs.
* Side note. Often there are no symptoms of kidney disease until it is fairly far advanced. Doctors sometimes don’t consider it a problem at all until it is in Stage 3 or worse. It is a good idea to start learning about kidney disease at the first indication there might be a problem. BUT prepare; don’t panic!