I'm sorry about what you went through. I also did not feel very confident in my previous OB physician and felt that he pushed off my symptoms. I have found a new OB and MFM, who have worked with pre-e patients and patients with chronic kidney disease, and they have a plan to monitor me closely with a future pregnancy, along with my nephrologist. I think when someone has been through what we have, an OB with pre-eclampsia experience is a must. Do you have hypertension or are they just monitoring for it? From everything I have researched and been told my my kidney team, if you go into a pregnancy with reasonable kidney function (serum creatinine 1.4 or below, creatinine clearance 70 or better) and normal BP or well-controlled hypertension that the kidneys should be okay and pregnancy should not change the natural history of the kidney disease. Unfortunately that doesn't account for pre-eclampsia or HELLP which does have the potential to cause more stress and damage to the kidneys. Have they measured your kidney function with a 24 hour urine? From what I know sponge kidney disease does not usually result in loss of kidney function.
I went into my pregnancy with undiagnosed hypertension and kidney disease, so I feel kind of like I was behind the 8-ball from the beginning. While the pre-e/HELLP and loss of my son was devastating, I am fortunate that I did not lose any more kidney function and my BP is now very well-controlled on meds. In my case my body makes abnormally shaped IgA (immune complexes) that get "stuck" in the kidney and cause damage resulting in protein in the urine along with occasional red cells. I am fortunate to have a more "quiet" type of IgA nephropathy which is only slowly progressive and can go into remission. There are other people who will progress to kidney failure in a few years. No one knows what triggers the formation of the abnormal IgA
What did the cardiologist say about your heart? Is that doing okay??