Ya know what changed the medical profession, when doctors became specialist. I’m 78 and I miss the days when old fashioned doctors had to know everything. I’ll give you a prime example. In 1944 I was 6 months old when my mother became concerned about me losing weight, throwing up and having diarrhea. She took me to our local hospital where two doctors told my mother to take me home that I was dying from a condition called “Waste of Life”. My grandfather was Native American and had told my mother that if she had a child White man’s doctors couldn’t help, to talk it to a medicine man. She did just that and I was Pow-wowed and given a spiritual healing. He knew what was wrong, gave my mother some herbs to drink like tea and it would get into her breast milk and heal me. She did and here I am 77 years later. Why did I tell you that story, here’s the answer.

Zip 30 years and I’m at my old fashion doctor’s office. I had been doing research for my book of older medical names compared to more modern names. I asked my doctor had he ever heard of the medical condition called “Waste of Life”? He paused what he was doing, looked up towards the ceiling of his office and searched his memory. It was an old medical term that often killed young babies and toddlers and it was what those two doctors said I was dying from. Yes my doctor answered, he had had a few cases himself when he first started his practice. He said that it was an immune system problem where the child’s bowel couldn’t absorb enough nutrition to keep it alive. In today’s medical terminology it’s called “Failure to Thrive” and is still killing babies in 2022. I miss my old doctor, he had to know everything. Do you think any specialist could answer my question, they probably never heard of it. Any person that reads my replies knows how sickly I’ve been all my life. I have or had so many rare or very rare conditions, I literally tell each new doctor I get to throw away their textbook knowledge because I’m not in them since I’m a “Freak of Nature”. I’ve been misdiagnosed to many times, several nearly caused my death. So it was my body against their text books, and I became my own specialist!!!

Appreciate your appreciation. Now, what can we do?

I had a similar experience but with my GP. I had CKD3 and I never was told about it so I tried to find more info on the Internet. I did find DaVita site very helpful and now, of course, this wonderful site. You can't get much better than the Mayo Clinic. I'm sorry to hear about your experience but I'm not sure, did you have this trouble with a Nephrologist? Who the hell do you get help from if not a specialist in kidney disease?? Take care and don't give up (easy to say). I have to wait until September for my next lab work and I with it were sooner. It's lousy having to wait 6 months to find out how you have been doing by your numbers. Oh well, no choice there but the waiting is frustrating. Again, my best to you.
Nancy