Chronic Kidney Disease (CKD): How do I stop progression?

@trishanna It does seem to be a prevailing issue, like you said, and as @gladiator14 mentioned. I can tell you what has worked for me.

In 1988 I was diagnosed with Systemic Lupus, after a many-months long series of testing. Back then it was a lot more difficult to get answers. I frequently found myself being my own army, and insisting on complete information. I did not blindly accept whatever a Dr said, making them explain their decisions, educating myself on different health issues as they arose. So, I told my drs an army was needed, that was made up of more than just me. Dr's, medical assistants, nurses, lab techs, all had to help me be as healthy as possible. I refused to simply sit by, without giving my input. If a Dr was not onboard with this concept, I set out to find one who was. Easy? Nope, not at all!

Fast forward to now. This is still how I work. More health issues, more specialists, and they part of my army. Have I had to recruit? Yes. But right up front they know what is expected of them from me. Be your own advocate, don't be afraid to stand up to anyone.
Ginger

@gingerw Excellent ideas. Once suggested to one of my doctors that I have a "coffee" for all my doctors so they could get to know one another. He chuckled and said I couldn't afford all that coffee. Fast forward: same doctor just suggested major surgery for me, ignoring what would be serious problems in other areas, and when I balked, he really took it personally. I find a lack of communication - in spite of all those laptops medical people have now - to be a big problem.

@trishanna Yes, some drs will take it personally. Unrelated to kidney disease, I will relate a story.
While being tested for lupus, a dr suggested I go on prednisone. I asked if he had even looked at my chart, as prednisone might very well take me into medically induced diabetes due to family history. He refused to see me, and I signed up with another dr same specialty. He noticed I was there at next appt, and I overheard him tell new dr "It's all in her head. She's a nutcase." I came out of the exam room, half-dressed, and gave him what-for, right in the hallway! Registered a complaint with medical board.

A good dr will recognize the M.D. behind their name does not stand for Master Deity.
Ginger

Good for You, @gingerw!! Aren't you also the witty brain who mentioned having D.P. (difficult patient) in her chart??? Luv the Master Deity handle too!!

If I'd gone streaking out of the exam room half-dressed, wouldn't have been a need to report the jerk to the medical board; they'd have been calling the morgue for him instead...even I haven't seen this withered up wrinkled stranger who lives behind my voice in years.

Your story reminds me of daughter's experience at the teaching hospital where her hubby was chief of surgery. An intern passed her talking to the doc she had an appt. with saying: "and that Kingpin ..... (hubby's name) thinks he's Emperor of the Universe" Thinking fast, daughter held phone to ear and said excitedly, "Honey, do you know an intern named........? because he just dubbed you Emperor! I was with her when that happened ...poor intern nearly choked!

Your story made me lol, @fiesty76! Your daughter did good! @gingerw, love learning the true meaning of M.D. Should there be any of those M.D.s looking over our shoulders, let me hasten to ad that I like and admire many who I've come to know over the years. Like plumbers, lawyers and electricians, M.D.s come in all sizes, styles and skills. My questioning of doctors began many years ago, and saved my life for sure at least twice! Believe, trust and then verify!!! It can't hurt.....

I carry two pages of medical history and everything I now am being treated for plus medications I'm taking. I'm 86 and need to come up with and concise answers for the questions asked on the fly.

@cldmeyers. A good idea for us all, I think!

@cldmeyers I have a gray bag that is carried to my appointments. There are folders for:
1. Biopsies/reports/procedures
2. Lab results
3. Individuals Dr's and notes from their offices
4. Miscellaneous
In the first 2 folders, everything is in chronological order, newest on top, with ordering dr's name highlighted on header. There is a hand-written index in those 2 folder, so I know what is where.

Many is the time a Dr has asked a question and I can pull out a report for reference. No way I will trust myself to remember everything!
Ginger

@gingerw Got heavy duty tests coming up and long discussions about what's to be done. Forgive my ignorance, but how does one get copies of all that stuff?

Happy for your laughter, @trishana. And what you wrote about the differences in professionals is so true. Some are pure gold and others, mediocre at best so it pays to remember not to lump all into one basket or generalize.