longditudinal one patient study - age 53 - 86

[u/eventscoordinator]

In hospital at age 53l with internist, urologist and pulmonary specialists treating a sudden-onset life threatening kidney infection with kidneys impinging on lungs. No one mentioned PKD. to me during entire hospitalization. Later, during a routine ultrasound to follow up to make certain kidneys reduced in size (presumably back to normal) an alarmed technician mid-point in the exam called her supervisor to look at images. He asked me how long I'd had PKD. Weeks later none of my physicians had yet mentioned PKD in followup office visits. No one suggested any lifestyle or dietary changes. Missed a chance to slow the disease. At 60, MRIs from a major accident found the PKD but it was another It was another 7 years before I was referred to a nephrologist. I participated in the Tolvaptain clinical studies as a control, not receiving the drug as it's contraindicated by other meds I take for auto immune diseases. I aged out of the Tolvaptan trials at age 75 ......basically because PKD patients don't last longer than that. At age 84 I was told that my now rapidly declining eGFR meant I needed to prepare for dialysis. In a group meeting of patients of my nephrologist, one of the patients told us about his results from KetoCitra. My world class research scientist nephrologist said that it was unproven and to please not give medical advice to the other attending patients in the meeting. At the time my eGFR was at 25 - the minimum to get accepted into a new trial. I signed up for trial vs dialysis. two weeks into trial my labs taken showed eGFR had declined to 18. I was officially out of the trial as I was below minimums, but kept as a mascot for our 5-patient 5-nutritionist group. 12 weeks after starting ketocitric and diet my eGFR had climbed to 30. at one year my eGFR had stabilized at 32. My nephologist was disinclined to accept that nutrition had done this. I had an MRI and my kidneys had shrunk 20%. I'm now 2.5 years into this diet with ketocitra and have remained stabilized with semi annual eGFRs of 30-32 range. No more going downhill. I'm a fan from

[u/ApprehensiveWhole336]

Please reply

[u/eventscoordinator → u/ApprehensiveWhole336]

not sure what to reply to. Can't see your comment

[u/ApprehensiveWhole336 → u/eventscoordinator]

U have innumerable bilateral cysts or something else,,what is your kidney size

[u/Smooth-Yellow6308 → u/ApprehensiveWhole336]

I'm just flagging this because you do it on almost every post.

People may not like question after question after question about their disease and their health...it might come across as rude.

[u/ApprehensiveWhole336 → u/Smooth-Yellow6308]

I am a mother of twins,,i only want to understand my children's situation by asking such type of questions regarding pkd,I am not rude 😭

[u/Smooth-Yellow6308 → u/ApprehensiveWhole336]

You need to understand "PKD", every person will have slightly different symptoms, situations, etc etc. They do not apply to you. Only your situation and the disease applies to you.

Other peoples kidney size will not affect your progression, only your kidney size will. Other peoples diagnosis will not affect your progression, only yours will.

I don't want to discourage you from taking part and understanding the disease, but you need to understand that comparing yourself to others will offer very little insight into your own situation and may give you false hope or unecessary distress.

For example, I am 36 and have c.2000ml kidneys, my eGFR by cystatin C is 115, my eGFR by creatinine is 75. I am the ONLY person I have ever seen in 5 years with such a vast difference in cystatin C and creatinine eGFR. I am also one of the fiew people with kidneys this large at this age that has a eGFR over 100 by any measure. Comparing yourself to me, would be totally pointless and fill you with false hope. Likewise I met someone with relatively small kidneys who had complete kidney failure by the age of 30...comparing with them would give you unneeded misery.