I need to interview someone diagnosed with CKD

I'm in albany NY. I went to a nephrologists office and they wouldn't let me see patients.

If you're not comfortable answering online I understand but in person may not be possible.

The tasks I have intended on trying to ask about include,

Determine the person's level of awareness of CKD and its complications. How has the person dealt with the underlying disease contributing to CKD?

How has CKD affected his/her life? Are other family members at risk? What types of medical professionals have been helpful in dealing with his/her disease?

How has CKD affected your life? Are other family members at risk?

What types of medical professionals have been helpful in dealing with your disease?

I have dealt with it by having many UTI's and meds. I was born with a defect in my kidneys and so I have always had issues. You simply carry on and praise the Lord for each day.

It has affected my life with pain, infections, medical bills, and resistance to antibiotics. But, since it was a singular anomaly, the likelihood of passing it along is slim. However, not impossible.

Since this has an issue since childhood, and the physicians at that time did not consider the ramifications in the future, no one has been really helpful until now. The kidney has only been causing severe pain for the past few years and was just diagnosed with failure. It is only at 19%. But, the severe scarring, current crippling pain (her opinion that the kidney itself is infected), and recurrent development of phosphate stones has led the urologist to the decision it would be best to remove it. It will only continue to cause pain and problems. Now, I need to visit the surgeon, in 2 days, to make the definitive decision.

Thought I would give you an update.

Surgeon says removal is definite. The kidney was probably dysfunctional at birth, but docs never bothered to address the issue in later life. The kidney is not going to get better. My good kidney is actually a duplicate kidney with only one working system. It's healthy for the moment. However, I have to see a liver doc about non alcoholic cirrhosis before he will schedule the procedure. I'm a little miffed that docs in the US never bothered to address the issue of function, even though they could see the issue with the kidneys. They simply assumed it was doing its job.

Sorry, just seen your post saying your in the USA, so my experiences won't be of any help as the Nhs is very different from medical care there.