GFR dropped 5 more points and I don't know why.

Posted by csage1010 (Sue) @csage1010, Sep 22, 2021

HI all, I got some blood work today and I was actually expecting the results to be good, or at least stable. My GFR dropped from 59 to 54 in 2 months. I have lost 20 pounds and my sugars are within normal limits. So sad.

Interested in more discussions like this? Go to the Kidney & Bladder group.

@gingerw

@csage1010 My oncologist had talked to me about this agent. But last time I needed a scan that is best done with a contrast, we decided in my best interest that we would go "no contrast". I was already below 30% eGFR and we didn't want to risk anything. The technicians were pretty awesome people, had everything set up, and understood my insistence to see the orders!
Ginger

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Sounds like you worked in concert with your doctors to make the best decision for you. Great job Ginger!

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The point is that the safest decision–no dye use–doesn't provide the best images. The best images are essential for the best treatment.
This is 2021. Billionaires are flying into space for fun. Here, on earth, there's no definitive test for early stage kidney disease that would perhaps result in a treatment that would save vital organs. Does this make sense to you? Perhaps we need to contact Elon Musk, Bill Gates and the rest of the crew and ask them if they'd prefer to sit in a dialysis chair or fly into space. Our values seemed to be turned upside down and inside out. You can make money fighting illness as well as seeing the planets. Also, how many brilliant scientists and cyber people have been sacrificed to nuclear dye. Why just watch kidney function fail and play with drones.PSomething very wrong with the perspective in this picture.People are living longer. It's time to improve the quality of their lives. The future is now as well as in the future.

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@petuniamom567

The point is that the safest decision–no dye use–doesn't provide the best images. The best images are essential for the best treatment.
This is 2021. Billionaires are flying into space for fun. Here, on earth, there's no definitive test for early stage kidney disease that would perhaps result in a treatment that would save vital organs. Does this make sense to you? Perhaps we need to contact Elon Musk, Bill Gates and the rest of the crew and ask them if they'd prefer to sit in a dialysis chair or fly into space. Our values seemed to be turned upside down and inside out. You can make money fighting illness as well as seeing the planets. Also, how many brilliant scientists and cyber people have been sacrificed to nuclear dye. Why just watch kidney function fail and play with drones.PSomething very wrong with the perspective in this picture.People are living longer. It's time to improve the quality of their lives. The future is now as well as in the future.

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petuniamom567, you sound very upset, and for good reason. But, if I may say, I think it’s important to acknowledge the issues and then put them aside and do the best you can. Focusing on this stuff is really not doing you any good. The anger and stress are legitimately awful for any disease progression. Acknowledge the anger and frustration and then try to move on. I’m sure they are working on the dye issue. I work in a hospital as a clinical & neuropsychologist. I can tell you first hand, the development of technology for the human body is infinitely more complex and challenging than the development of technology for drones and space flight. Please hang in there and enjoy your time with friends and family!

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Thanks for your thoughts. Still believe harmless dye should be a top of chemical development list. Think of all the kidney patients that would benefit.

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Wish there were some way to push the chemists and biologists in this direction. Have many friends with this disease and diagnosis with proper dye is extremely difficult. Don't really understand what's going on and why.

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@petuniamom567

Thanks for your thoughts. Still believe harmless dye should be a top of chemical development list. Think of all the kidney patients that would benefit.

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YES i AM ALLERGIC TO THE DYE SO WAS MY FATHER DUE TO OUR INHERAITED CONDITION Hemochromotosis swell up like a blimp and very sick hoping they do come up with harmless dye someday Barb BAKER

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the use of a dye that does almost nothing to help either doctor or patient makes almost no sense.how can we convince the medical community that the invention of a dye harmless to kidneys is a life-saver. forma a group. go on social-media. i don't know. but something has to be done. proper diagnosis saves lives.

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Dye and kidney problems remain a mystery to me. I like the comment about the printer material. Also, there are
lithographs, fabrics, numerous sorts of materials that utilize dye. Some of it natural. So what's holding up the
works? More money to be made, the less we know about the organs of challenged people. Hate to sound cyncial,
but that's the only conclusion you can come to in this advanced technological age. You would think that someone
would have invented an articulate organ camera that simply used light. We can see to the edge of the universe, but we can investigate our own bodies. Very strange. Kidneys are killers and money-makers. Let's home things
improve. Let's think about how we can encourage that improvement——-

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I'm sorry to hear that. My cousin's (who also has CKD-3) and they went down from 54 to 50 in two months. She isn't very diligent with her foods but she was at 54 for a while. My numbers were 49 last blook check and in the past 6 months or so I have been very diligent re veggies, eggs, fish, and very aware of my salt intake. Have you changed any of your eating habits in any way??? My blood work is due on September 11'th so I will see just where I am after 6 months of waiting. If I were you I wouldn't panic but try to cut down on salt (if you haven't already done so), drink more water. Have you ever seen a Nephrologist? I have not done so yet but I will shortly. Best of luck and keep writing to let us know how you are doing. : )

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@petuniamom567

The point is that the safest decision–no dye use–doesn't provide the best images. The best images are essential for the best treatment.
This is 2021. Billionaires are flying into space for fun. Here, on earth, there's no definitive test for early stage kidney disease that would perhaps result in a treatment that would save vital organs. Does this make sense to you? Perhaps we need to contact Elon Musk, Bill Gates and the rest of the crew and ask them if they'd prefer to sit in a dialysis chair or fly into space. Our values seemed to be turned upside down and inside out. You can make money fighting illness as well as seeing the planets. Also, how many brilliant scientists and cyber people have been sacrificed to nuclear dye. Why just watch kidney function fail and play with drones.PSomething very wrong with the perspective in this picture.People are living longer. It's time to improve the quality of their lives. The future is now as well as in the future.

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You are so correct but I don't think any of these things are important to those very rich people. I do have an important question for all with CKD. I was speaking with my Cousin Carolyn who also has CKD-3. This is what her Nephrologist said to her (not verbatim): Keep eating the way that you are and watch your sodium intake. Really?? I have been avoiding magnesium, phosphorous, potassium (although I run low so I take supplements), caffeine, protein, etc. I'm not fanatical but I do watch the numbers. Who do you listen to?? I was shocked when she told me what he said. Am I being too diligent and missing out on some foods that I avoid? Any answers will be much appreciated. I already had CKD-3 in 2018 but the only way I found out was by reading my after visit summary. GP's need a course in kidney disease.

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