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Told I had kidney disease at stage 3
Chronic Kidney Disease (CKD) | Last Active: 2 days ago | Replies (95)Comment receiving replies
@ddon
Hi,
I'm past the worrying and am just mindful not to do anything stupid that can affect my kidneys.
I have just dropped to GFR39 at age 73. I'm pretty sure Autonomic polyneuropathy is going to get me way before my loss of kidney function will. I live by the colour of my urine, it tells me when I need to be drinking more or not so much and that is what keeps the kidneys functioning.
What you need to watch out for is Dr's that try to mitigate your health without consulting you. I have made it plain to my Dr's that won't happen without my consent, ask first. I usually make suggestions to my Dr's and they can agree or just roll their eyes! I do more research about my health issues than they do, so I believe I know as much or more about my situation then they know or appreciate. I find the younger Dr's are the ones more likely to want to do more as they still think they can cure the world. When they eventually find that I'm incurable and untreatable they drop me like a hot potato. I still haven't found out exactly why I get the symptoms I do but I'm getting closer, it is some sort of Autonomic problem caused by a serious bout of Campylobacter which very nearly killed me. Very much like long Covid can cause, except I predate Covid.
Cheers
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@cheyne
I have had the good fortune to have helpful, educable doctors. Five years ago, my PCP referred me to Nephrology when my creatinine continued to creep up and was approaching 1.0. I am still seeing the nephrologist I was assigned to see. I always tell physicians that I can generally understand what they say and will ask if I don't. (I taught organic chemistry and took a fair amount of biology--a year of advanced physiology, a year of biochemistry (at a medical school where the university's Biochemistry Dept. was housed) and a semester of microbiology.)
I had a gazillion tests before a kidney biopsy revealed the problem. Even that wasn't easy--my sample stumped the lab at the HMO where I have been seen since 1978, was sent to the County hospital in Minneapolis and from there to the Mayo Clinic. A pathologist in the Nephrology and Hypertension Dept. at Mayo had the necessary test reagents and experience to decide my sample should be examined by electron microscopy. Apparently, the micrograph was the clincher--she'd published a paper on that before studying my sample. When my nephrologist received the report, he made a pdf and sent it to me via the HMO Patient portal. It was his and my first time to see the phrase Immunotactoid Glomerulopathy aka ITG.
I still have access to university library loan and used the web to research ITG. I found articles published by "my" pathologist and worked to get an appointment with the Mayo nephrologist who was a joint author on a few of those articles.
I was sent to see a hematologist next because of the approx. 100 patients who were found by a team led by my Mayo nephrologist, 70% have lymphoma plus ITG, 30% have myeloma plus ITG. So, I was tested for lymphoma (neg) and myeloma (neg). That means that I am one of about 10 known idiopathic ITG patients in the world.
Fortunately, the HMO nephrologist and hematologist were curious and educable. I shared medical journal articles on ITG with them. My hematologist decided to treat me for lymphoma, just in case, because lymphoma patients with ITG who have successful lymphoma treatment, are also cured of ITG. That failed for me. Next, he treated me for myeloma. He still doesn't think I have myeloma, but the treatment slowed the progression of "my" ITG.
The doctors have recommended against further treatment since 2023. It is an amazing feat considering the average time to dialysis for ITG patients is four years from diagnosis and survival on dialysis is only 3-5 years.
The downside is that my immune system stubbornly refuses to recover from the treatments, so I am either forced to isolate (which I've done since covid isolation started in 2020) or pick up one after another viral infection.
Masking with an N95 or N99 seems to be somewhat protective. (Although an Infectious Disease Specialist told me I must have gotten covid through my eyes on one of the visits I made to the local hospital where I was getting myeloma treatments.)
I have been able to attend St. Paul Chamber Orchestra concerts. I've successfully flown to HI and to see the grandkids in NC. (I get what they've got though.)
To echo your fine sentiment: Cheers!