ADPKD and Intermittent Fasting

@mrainne Welcome to Mayo Clinic Connect! I do not have PKD, but rather a rare form of an autoimmune condition that is my kidney disorder. Several years ago I was advised to not do keto diets, nor intermittent fasting.

However, i found this article thst seems to support PKD patients like yourself being successful on an intermittent fasting schedule: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8760407/ It is a rather scientific and dry approach to your question; my apologies i advance!

Congratulations for having an appointment with Mayo Clinic in May! I will be interested to hear what they also have to say about diet choices/lifestyle when you see them. As you may surmise, diet is a real common thread of discussion for us kidney patients, and there are so many avenues to research! Do you have any other questioons for me at this time?
Ginger

Thanks, Ginger! Yes, I read that article and found a few others after I posted this question. It seems the benefit has something to do with Ketosis. I typically eat from 7 am - 2 or 3 pm then only drink water the rest of the day. I sleep better and give my digestive system a rest. I don't think I have an appt. at Mayo in May (misunderstanding). I'm waiting for them to call and give me an appointment. I appreciate your quick response.

@mrainne Hydration is very important to keep up with for any good health regimen. No doubt you have read our discussions here about what to eat, how to eat, what works for different people. Giving your gut a break sounds like a good idea! And getting decent sleep cannot be overrated, in my book!
Ginger

Sleep, for sure! Typically 9:30 pm - 6:30 am for the most part. I try to drink so much water, and plain water but my BUN is 30! I forgot to mention I also have nephrogenic diabetes insipidus with my PKD. A double whammy. But my nephrologist said the PKD is more serious. One of the reasons I really would like to see a Nephrologist at Mayo. I get mixed signals. When all the bloodwork and electrolytes are normal aren't my kidneys working pretty well? I was even congratulated by my PCP for having such good overall bloodwork! That pesky eGFR and creatinine level (1.9). My local Nephrologist says don't exercise too much before your blood test. Then he says to drink more water before your blood test. He's right b/c creatinine is directly affected by muscle. And BUN by dehydration. And creatinine levels seem to rise and fall. But I'm now considered 4th stage and that took me by surprise b/c I try so hard to be a good girl with my diet and intermittent eating habits. :))

@mrainne Exercising before bloodwork can indeed skew some numbers, with the lactic acid buildup in muscles. Likewise, good hydration before bloodwork is a godsend to those phlebotomists, making the blooddraw easier. My veins are fickle, and making sure I hydrate the night before is critical. [the best vein to get blood is on the arm they cannot use, due to the fistula in place there!]

All we can do is our best, on any given day. And don't beat ourselves up on those days when we think we could have "done better". Having multiple issues to contend with, like you and I have, we have to be forgiving.
Ginger

Ginger, this is a 100% horrible question but I'm on a great and private medical forum. I've always wondered about this: What is the dying process if I refuse dialysis or a transplant? I don't have children, had an absolutely wonderful life with my husband. We've talked about this. He has been positively responsive about that decision but thinks I'm overthinking the seriousness of my condition. I'm active, energetic, feel great, weigh 135 lbs., and love life. I have reservations about dialysis, hate the thought. And wonder if a transplant is even viable. Honestly, I feel comfortable about considering that option but don't know what it would be like. Are you able to offer that scenario or is it against a volunteer's area? I don't want to put you in a weird position. I should ask my Nephrologist, but he'll say "oh you'll live to 100" like he always does.

@mrainne
Well. This is quite the question! I hate to think I have hijacked this thread, but you were the one who created it, so here goes!

I cannot be transplanted for a new kidney because of my cancer status. I am on dialysis for the rest of my life, my life as I choose to live it, or not. I am attaching a link here from the National Kidney Foundation, that addresses the question you pose. Personally, I have known one person who chose to not go forward with dialysis, much to her husband's sadness. It is indeed a personal choice.

As far as being eligible for a kidney transplant, ask your nephrologist for a referral to a nearby transplant center, if you want to explore that option. Remember, there are several great websites also that will give you preliminary information. While my options don't exist, that doesn't mean yours don't. Does this all help you?
https://www.kidney.org/atoz/content/dialysisstop#:~:text=This%20varies%20from%20person%20to,and%20their%20overall%20medical%20condition.
Ginger

Thank you, Ginger. That article was very helpful. Mayo Clinic just gave me an appointment this morning. It sounds like I will be there for a week in June. I'm so grateful! All my records and imaging were electronically sent. I feel like I'll have a great team to discuss all this with. I'm getting tired of "googling" articles. Half the time I don't know what to ask to get information. And when my nephrology appointments are 20 minutes, well you know. I so appreciate your correspondence. Everything you say has been extremely helpful. You get 5* as a volunteer from me. I hope our thread has been helpful to others, even though it's been us primarily discussing.
I cannot thank you enough! Dialysis is certainly a personal choice and I have to think about it more.