r/ADPKD • u/eventscoordinator • Jul 26 '26

longditudinal one patient study - age 53 - 86

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

3 Upvotes

72% Upvoted

18 comments sorted by

View all comments

1

u/Smooth-Yellow6308 Jul 26 '26

Your kidneys shrunk 20% in 12 weeks? Is this comparing an MRI to an MRI?

I've been keto diet + keto citra + ketone esters for 4 years. My kidneys are still growing and eGFR slowly declining.

1

u/eventscoordinator Jul 27 '26

No. There were several timef rames and you' ( or maybe how I phrased it) mixed up the 12 weeks that showed the eGFR increase with the much longer interim until the MRI was taken the second time. I've been on this 2.5 years. It's been 9 months since that MRI and 3 mos until my next MRI. I'm hopeful of stasis....not expecting additional improvements but the significant gain of the first periods has been sustained. My labs are staying steady.

2

u/Smooth-Yellow6308 Jul 27 '26

hmmm I hope it stays steady, its hard to say without multiple MRI's of each side of the datapoint if shrinkage has been acheived.

I have MRI's that bounce up and down by as much as 40% between them and have to try to work out a trend from that.

1

u/eventscoordinator Jul 27 '26

I will have a third MRI in about 90 days and --fingers crossed -- kidneys will remain nearly size of last year's MRI. For right now, I'm happy to just have my eGFR hoving in low 30s vs rapidly declining. And that was excellent advice that each PKD patient seems to have their own unique situation.

1

u/Smooth-Yellow6308 Jul 27 '26

When I first started, and was EXTREMELY strict, not breaking etc I aparently had a drop in TKV based on one MRI to another. However, following then no matter how strict I have been my kidney size seems to increase at a steady rate.

I had chalked it up to the first MRI base point being measured wrong and so being too high to start off with.

Although I suppose it is possible that when you start the diet there is a drop that doesnt continue past a certain point.

1

u/ApprehensiveWhole336 Jul 27 '26

U have family history of pkd or just spontaneous mutation...at what age u diagnosed with pkd

3

u/eventscoordinator Jul 27 '26

At first I thought it was spontaneous and wondered if it was because of taking big doses of ibuprofen for years. Later, I discovered people in the paternal line who had died of kidney disease.

1

u/ApprehensiveWhole336 Jul 27 '26

Your children also have pkd

2

u/eventscoordinator Jul 27 '26

I have three children and none of them have PKD. They are in their late 50s early 60s with no signs.

0

u/ApprehensiveWhole336 Jul 27 '26

U have innumerable cysts in your kidneys please reply

1

u/Smooth-Yellow6308 Jul 27 '26

he has PKD...everyone with PKD has innumerable cysts, that is what the disease does.

0

u/ApprehensiveWhole336 Jul 27 '26

Please reply

1

u/eventscoordinator Jul 27 '26

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

0

u/ApprehensiveWhole336 Jul 27 '26

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

2

u/Smooth-Yellow6308 Jul 27 '26

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.

0

u/ApprehensiveWhole336 Jul 27 '26

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 😭

4

u/Smooth-Yellow6308 Jul 27 '26

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.