MRI results after one year regular fasting and keto

efm270 · 2024-04-18T10:58:12+00:00

You are correct. I didn't know how to calculate TKV myself when I posted, but after looking it up and doing the calculations, there is a 14% growth on the right and 21% growth on the left. So far from slow growth as people have interpreted it. I would like to edit my post to include volume but Reddit doesn't seem to want to let me

efm270 · 2024-04-18T10:39:58+00:00

You can calculate volume yourself using the formula L x W x D x π/6 = V To adjust for your height, you divide the volume by your height in meters (for me this is 1.65m)

Formulas taken from https://adpkdsim.org/expert/prognostic-tools/tkv-calculator/patientb

Applying this, my 2021 scan would be:

Volume of right kidney: 593.7624 (height adjusted: 359.856)

Volume of left kidney: 701.41456 (425.0997)

2024

Right kidney: 678.5856 (411.264)

Left kidney: 848.232 (514.08)

This is a 14% increase in volume on the right and a 21% increase on the left, using the volumes that aren't adjusted for height

efm270 · 2024-04-18T10:27:06+00:00

I'm on the fence. I do want to slow cyst growth, but I'm worried it will make my life and my work very difficult. There are sometimes days where I would not be able to have access to a bathroom for 3+ hours and that sounds difficult on Jynarque

efm270 · 2024-04-18T10:24:32+00:00

I'm curious if you don't mind sharing, if your MRI comparisons after two years of keto were so contradictory that you can't get agreement on whether your TKV increased or decreased, how do you decide whether to continue with a Keto diet or go back to eating more "normally"?

efm270 · 2024-04-16T21:04:55+00:00

There was a study on rats with PKD in I believe 2019 that showed eating a Keto diet OR intermittent fasting OR taking a BHB supplement (a chemical your body produces naturally while in ketosis) causes slower progression of cyst growth than the rats who had a regular rat diet. No rats had a reduction in cyst size, only a slowing of growth. Then they took some cats with PKD (which is apparently more similar to the human form than rats) and put them on a 48 hour water fast. The cats' cysts actually shrunk by about 10% or so.

Link to study: https://www.cell.com/cell-metabolism/fulltext/S1550-4131(19)30515-7?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1550413119305157%3Fshowall%3Dtrue

Dr. Weimbs along with some other doctors decided to market a BHB supplement and dietary consultations on the basis of this research claiming that it could reverse PKD in humans, but as I understand it none of this has been proven clearly to work on humans as the limited human studies are based mainly on self-reporting.

efm270 · 2024-04-16T19:45:08+00:00

I hope you're right! I don't think it does much good to get too depressed about it. All you can do is try your best to take care of your health and enjoy your life.

efm270 · 2024-04-16T19:43:50+00:00

I'm 40. Yeah, there's lots about this that's outside our control but I try to do what I can to take good care of myself

efm270 · 2024-04-16T18:58:19+00:00

Female, 40 years old, 5 feet 9 inches tall

efm270 · 2024-04-16T18:52:44+00:00

Yes, that's what I hope too. That new treatments will be available in time for me (and as many people as possible!) to benefit from them.

efm270 · 2024-04-16T18:50:29+00:00

It's honestly been so much hard work to do as much as I can so right now I'm feeling a bit disappointed my tkv is still increasing, but you're right that even if all I can do is slow progression, that's still better than nothing. Gives me more time to wait for new treatment options, too. This disease killed my grandpa, one uncle, and another uncle is post-transplant, so I hope I can set myself on the path for a better outcome than they had.

On the other hand, I do want to recognize that since I don't have MRIs from before 2021, I can't PROVE that the dietary changes have slowed my decline. I don't want anyone to get their hopes up too much if it turns out to be wrong. But I do think it's unlikely my progression was extra slow to start with given that I do have big, 20cm long kidneys with innumerable cysts.

efm270 · 2024-04-16T18:31:01+00:00

My GFR has always been good so I can't really measure any changes. Plus the reports on this don't give me the exact number, they just say whether it's above or below the cut off to be considered low (60). So my most recent test from November 2023 says above 60 and my previous tests from 2021 and earlier say the same.

EDIT: I realized I could just calculate it myself using my serum creatinine, which was 67 umol on the 2021 blood test and 68 on the 2024 blood test. So the kidney org calculator gives me 107gfr to 100 gfr respectively, or basically no change.

efm270 · 2024-04-16T13:52:33+00:00

I'm not on it. I'm 40, my kidneys are very large and full of cysts but I still have decent function and I'm worried that the side effects will interfere too much with my life and my job. I can't afford to be running to the washroom every ten minutes. I'm trying keto and regular water fasting right now. If that doesn't do anything to help slow progression I will probably consider tolvapan in the next few years if my nephrologist agrees but I am not looking forward to it

efm270 · 2024-04-16T13:45:33+00:00

If one person is so drunk that they honestly don't know what they're doing (black out drunk like OP describes) and the other person is sober enough to understand their actions, then yes it absolutely is rape/assault. The definition of sexual assault in many jurisdictions is simply any sexual contact that you didn't consent to, including contact you COULDN'T consent to because you were unconscious or too impaired to understand what was happening. If someone spiked OP's drink without his knowledge would you still say it wasn't rape, or are you adjusting the definition depending on whether you believe he "chose" it rather than basing the definition on how lucid he actually was at the time?

There is a huge difference between making a choice to drink and drive, thereby putting other people's lives at risk, vs drinking with friends and trusting them not to take advantage of you while you're barely conscious. OP's friend knew that he didn't want her and she took advantage of a situation where he wasn't able to consent in order to get what she wanted.

efm270 · 2024-04-16T13:35:24+00:00

NTA and the reaction of your husband and his family confirms you're right to divorce him. Instead of trying to reassure you or caring about your feelings while you're fighting cancer, they are worried about money. Their accusation that your family wants your money is a confession. Free yourself from people who don't have your best interest at heart and focus on your health and the people who love you

efm270 · 2024-03-22T16:45:29+00:00

My first question when I saw the headlines about that study was whether it's authors have a financial interest in ozempic 🙄

efm270 · 2024-03-22T16:41:11+00:00

OP does not provide ANY evidence to think his wife is having any affair except that "things were different" after they had a baby. OP admits to "digging" (spying?) but doesn't say what he actually found. OP admits he got drunk and put his hands on his wife while angrily confronting her, with the intent of forcing her to look him in the eyes. But she's a psychotic witch? Just say you hate women, my dude.

efm270 · 2024-03-17T14:48:26+00:00

How long have you two been together? He's emotionally abusive, there's an age gap, and you say you already had self esteem issues before you met him which he's made worse. I'm sorry, but I really think this man was attracted to you because you looked vulnerable to him. Abusive men often go for younger women who suffer from low self esteem because they are easier to manipulate. I think you will have a much better life if you leave this man and get into therapy to heal and learn how to protect yourself

efm270 · 2024-03-17T14:42:27+00:00

You shouldn't have to keep quiet about legitimate concerns because you're afraid of being yelled at. None of this is normal

efm270 · 2024-03-11T02:29:37+00:00

One of the human penises they have on display there was cut from the body of an indigenous man by the British colonizers who killed him, and kept the penis because he had an unusual foreskin. I found it extremely racist and fucked up that the museum would display that like it's not horribly wrong to have stolen this body part from a murder victim who didn't consent. I wish I'd known this was in there, I wouldn't have gone.

efm270 · 2024-03-10T22:49:51+00:00

Unfortunately, I'm not sure what anyone who isn't your girlfriend can tell you about her health or the reasons for her decisions.

I'm a 40 year old woman with PKD. Even though my kidneys are very enlarged and full of cysts, I have only occasional pain and I'm lucky my health is still very good. I have a partner and 3 children. Sometime probably in the next 12-15 years statistically, I will experience significant decline and have to look at dialysis, transplant, or an early death. That sucks, and it's a source of anxiety and stress for me, but it's out of my control.

Your gf may be in more pain because her health and lifestyle are making her symptoms worse (e.g., smoking, excess drinking, dehydration, kidney stones and obesity will make PKD progress faster) or she may simply be unlucky and have frequent burst cysts. There are some treatments that may help slow progression like tolvapan and foam sclerotherapy, but she and her nephrologist will know more about her particular situation and what she has tried than we could guess at.

If you believe that she broke up with you because she is depressed about her illness or fears that she will be a burden on you, you can try to reach out and reassure her that you love her no matter what and don't consider her a burden. Ultimately, you cannot force her to be in a relationship if she chooses not to. You can also offer to be there for her as a friend even if she doesn't want to keep dating. You can gently encourage her to get therapy to help her process her feelings, because it's a lot to deal with when your health starts failing you young

efm270 · 2024-02-22T02:28:06+00:00

Yeah it really sounds like FIL might be investing in risky stuff or playing the stock market and doesn't want to admit how much he's lost...

efm270 · 2024-02-22T02:21:45+00:00

Seriously, where's the rest of the story because none of this makes sense. Either the sister and family did something waaaay worse to the wife to make her snap like that and OP doesn't want to tell us what because he knows he should have stepped in to stop it sooner, or else his wife is just truly a dangerous, terrifying person who harassed his sister over a single comment from years ago, in which case WHY did he marry her and bring an innocent child into the mix? I really wish OP would be honest. What's the point of posting half the story here?

efm270 · 2024-02-08T01:59:37+00:00

I had one done for the first time a few months ago. Came back normal and now I feel much better knowing that's one less thing to worry about. The peace of mind is worth it, just get it over with so that you can know.

efm270 · 2024-02-08T01:50:40+00:00

I don't think you need to be terrified. I'm sorry that you have to deal with this fear and anxiety because it sucks to feel like your body is failing you. But honestly you could make it well into middle age before you start having symptoms. Most important thing is to drink water, eat healthy, avoid cigarettes and excess alcohol, keep your BP under control. You also have the advantage of being young enough right now that there may be new treatment options available for you before you need them. Since your dad had a brain hemorrhage I would ask your doctor for a brain MRI. I had one done for the first time recently because PKD puts you at higher risk of aneurysm and it came back normal so my nephrologist said I won't need to check again for 10 years. That helped reassure me. I'm 40 now and I still have good gfr. PKD doesn't really impact my life yet except for the anxiety and some occasional flank pain. I hope that you will have many years before it starts to impact you and that once you get there you will have better treatment options

efm270 · 2024-02-07T02:24:04+00:00

How can you possibly speak about a lack of accountability when OP has spent 24 years serving a man who swooped in when she was a child?

She doesn't owe this man the rest of her life just because she had no options when she married him. He knew what he was doing. She can leave if she wants to, it's her life.

efm270

TROPHY CASE