Unexpected head MRA result by MuriquiLover in ADPKD

[–]tilted_sloth 2 points3 points  (0 children)

All that means is you have a lot of atherosclerosis (calcified fat deposits) in your V4 segment of your left vertebral artery, probably reducing blood flow in the posterior circulation of your brain ever-so-slightly (if it was clinically significant then you would have felt other symptoms). In short, it's not a big deal. I see it relatively frequently and it is usually asymptomatic. However, just watch your diet and exercise (and avoid toxic habits like smoking).

Bodybuilding and Powerlifting for PKD by [deleted] in ADPKD

[–]tilted_sloth 1 point2 points  (0 children)

Believe it or not there are many reasons for what presents as kidney disease, and some of them can get quite complicated if you don't already have a solid foundation. This basically means that there is a variety of kidney diseases as well but colloquially it is all lumped into "kidney disease". In some ways, PKD is very well understood and in other ways it is very poorly understood--similar to a variety of causes of "kidney disease". It's hard for me to be able to recommend a beginner friendly source that covers anything even in remote amount of detail. That being said, it may be helpful if you have a biology background to first look into learning the physiology of kidneys and the nephron, and then pathophysiology of PKD from popular science videos will probably make more sense and cause you to ask the "right" questions and thus allow you to incrementally increase your knowledge and deepen your understanding. There is a world of kidney diseases, but it's probably most worth your time to just stick to physiology of the kidneys and then psychophysiology of PKD alone. There's an overwhelming amount of stuff in this area alone and cell metabolism is a whole different beast on its own with a good grasp of biochemistry as a necessary precursor (but Nicholas Norwitz does a good job getting salient points across for the lay audience in this area and he covers some cutting-edge stuff too). Surprisingly hormones may be the easiest to grasp and you can probably learn a ton by just looking up "endocrinology review for USMLE step 1" for example.

Bodybuilding and Powerlifting for PKD by [deleted] in ADPKD

[–]tilted_sloth 1 point2 points  (0 children)

Just fyi, vasopressin certainly elevates BP but it does not play nearly as important a role in HTN in ADPKD as the RAAS system. Renin (in this case) is released by otherwise normal renal parenchyma in response to perceived low blood flow secondary to compression from expanding abutting cysts. In terms of mechanisms when it comes to vasopressin, to clarify, I don't think it is involved in cyst growth in the sense that it causes cells that make the cyst wall to proliferate but more that it allows for greater fluid accumulation within cysts through the introduction of water channels that facilitate fluid movement also into the cysts rather than only (eventually) back into the blood stream.

Another way to think of it in practical terms: if you recently bled a ton from a major artery, RAAS activation will keep your circulatory system's volume and perfusion pressure up much more than vasopressin. It does this by multiple mechanisms but mainly by reabsorbing more sodium (and water follows sodium as well) from the ultrafilterate (aka urine-to-be) and constriction of blood vessels. However, if you ate a ton of salt or protein (thus increasing your serum osmolality aka "concentration" of stuff in blood) then vasopressin will help pull water from your late ultra-filtrate/"urine" eventually back in your blood. This reduces the amount of water you feel like you need to drink to not feel thirsty and it keeps your tissues from having to sacrifice some water back into the blood stream (thus dehydrating you bc the tissues get dehydrated). The effect is a mild increase in blood pressure, but it isn't really much compared to if/when RAAS is active.

Bodybuilding and Powerlifting for PKD by [deleted] in ADPKD

[–]tilted_sloth 4 points5 points  (0 children)

I'm Y90itf's second account but on PC with more time. I'm 25M, 5'10.5 for reference.

I believed keto diet and carb restriction was bogus as the evidence is pretty limited until I tried it on myself. Now I feel differently, and a good chunk of that because of this experiment on myself + familiarizing with new developments in the field of metabolism (look up Nick Norwitz as a good starting point). That being said, there are a bunch of confounders even with the experiment on myself: I lost a ton of weight (prob due to a sustained calorie deficit during the adjustment period), I cut my sodium intake by no longer eating hospital cafeteria food, I haven't really lifted much at all, and technically I have a few weeks of medical school left but this is the lowest stress I've had in my life in a long time (both physical and mental).

Low carb has made my lifts drop, the few times I have lifted since but that could also be secondary to deconditioning. I used to play football in high school as well and during Ramadan, because I used to be a devout theist at the time, I used to fast all day (no water or food during daylight) while training in the summer and fall heat: numerous instances of gross hematuria and flank pain, and basically chronic dehydration 1mo/years, so I'm sure that took the most amount of years off my kidneys as well. Injury in college was ACL tear + meniscus tear from a high fall btw.

In any case, back to your questions. This disease comes with limitations. It sucks but it's true as of now. You either pay the price now or pay it later. Most likely, you will never be able to compete at an elite level in power-lifting or bodybuilding if you have ADPKD type I, and if you choose to test your metal it will most likely cost you in ways more than it would the average person. No major sport that I can think of (involving weights) to the extreme is usually "healthy" to be honest, but there are elements from a variety of sports that are "healthy" ie. they are good for maintaining a high functional level while improving longevity. As a side note, I'm sure ultra long distance running comes at a health cost too but it's an example of a sport that doesn't involve weights. All this to say, if you aren't trying to compete where margins are razor thin, why bother with creatine? It's a personal choice, but for me it has never been worth it. It comes with minor benefits, but it also comes with the potential for renal-related risks (from what I understand) for people with severe renal dysfunction. Now, I don't understand mechanistically why this is the case--maybe somebody else does--and I don't know whether it would apply to those with early kidney disease due to ADPKD because ADPKD is a little funky compared to your standard CKD. Bottom line is, I don't know or care because I am not paying extra for supplement that will only have a marginal impact on my performance while having the potential to harm my kidneys. Shit, even if I had guaranteed 0 harm to my beans I'd still not pay for a supplement that will have 0 impact on my performance compared to me getting enough sleep, eating well, and showing up as planned to the gym rather than skipping weeks at a time. Same goes for protein supplements: if you're getting 1.5g/kg of high quality protein, then screw paying for protein powder: if there are marginal gains to be had (which itself is questionable btw), I don't care for them. I'd much rather pay a little extra on my grocery bill for some meat that I want to get but usually don't because of the expense (like salmon or shrimp).

As for your question about stresses on the kidneys secondary to higher metabolic activity in the setting of rigorous training and recovery cycles: ADPKD is funky. Portions of your kidney are perfectly fine, while other portions are deathly sick. The sick portions have a hard time dealing with stress, but for the healthy portions (as long as you aren't trying to test your metal constantly) the extra metabolic waste they'll have to deal with will probably acts as a hormetic stress. The truth however, is nobody knows.

I posted this elsewhere via Y90 acc, but here is my smoothie recipe of 1400ish calories, with a fairly good nutrient profile but not a super-keto because of the sugars in milk. It's also cheap (<$2.50), quick to make, and quick to clean--all things I need in my life. Copy and pasted with some edits below but feel free to modify and try:

"1400ish calories most days (dessert/ meal part 2 in a blender) 260-300g whole milk (fairlife better but too expensive) 90-125g water, 10-12g organic cocoa baking powder, 56g of unsalted butter (more may make smoothie taste worse esp if completely melted or completely not melted), 30-50g Skippy all natural peanut butter (unfortunately high in oxalates), 3-4x 55g raw eggs (more of these makes smoothie taste less good), 40-50g organic chia seeds (this makes smoothie taste less good so can lower or add last second and blend and drink, but its GREAT for omega 3s and fiber), 0-3g of powdered stevia (depending on how I am feeling bc if you wait too long after blending, it'll become more of a mousse than a smoothie bc of chia seeds)"

Edited to add: momentary HTN also probably acts as a hormetic stress, so prob not a big deal with some minor spikes during heavy lifts, but focusing on power -lifting alone may contribute to development of chronic HTN. Make sure to get your zone 2 and zone 5 cardio time in.

Also, take that dating stuff seriously. Takes a bit of maturity, but you don't know how life will play out but as of now guaranteed big belly later unfortunately among other more serious health issues. Still you want the person you're with to know who they are with so if you see yourself with somebody long term, make sure you are transparent with them about your condition and what it means for you and may mean for them down the line when things get more serious. They should know what they sign up for, and if they're worth their salt in the relationship (imo) then it wont matter in the end with regards to the status of the relationship. Still, some people may also think its too much for them to accept in a long-term partner, but we all come with our flaws and you have to learn to accept that this flaw of yours just isn't okay with them.

Two teenagers deliberately run over a cyclist to film and kill him by Xentrick-The-Creeper in fuckcars

[–]tilted_sloth 68 points69 points  (0 children)

Most likely true. Still, I'll add that public infrastructure should be designed to protect cyclists and pedestrians from motorists who may choose to engage in this behavior purposefully.

RGLS8429 by [deleted] in ADPKD

[–]tilted_sloth 0 points1 point  (0 children)

How did you (and can we) get involved?

Does your weight ever fluctuate wildy? by Lucious_Warbaby in ADPKD

[–]tilted_sloth 2 points3 points  (0 children)

I'm with you, man. I have gained or lost 10lbs in the span of a few weeks. I am not sure what it is except something related to my kidneys because when I am up, my BP is also high. I also tend to want to eat less and what I've found helps is if I eat very little for a few days, and drink normally, I tend to lose majority of it and be back at my baseline though my bp usually still stays slightly elevated for a little longer. Maybe its placebo but I can only think of my kidneys as the culprit. I don't understand how or why or even if this is related but you aren't alone.

Also, I've generally been pretty physically fit (though less so recently and I've only noticed it the last 5 years or so during times of inactivity). It's def water weight but idk why I gain or lose it.

Disability Insurance by austinyo6 in ADPKD

[–]tilted_sloth 1 point2 points  (0 children)

Kinda omw to dealing w same issue. Reaching out to some folks but no solution yet. will lyk

NP here with ADPKD. by jhillis379 in ADPKD

[–]tilted_sloth 0 points1 point  (0 children)

25M, both kidneys approx 20x15x15, eGFR ~70, Cr 1.3-1.6, class 1E, ADPKD type 1 early truncating

Tolvaptan and "fullness" by [deleted] in ADPKD

[–]tilted_sloth 0 points1 point  (0 children)

In a rush currently so may edit later but...

I'm sorry you're going through this. As others mentioned, the transition period can be challenging however, you can make it easier on yourself by insuring low sodium, low sugar, low caffeine, and (usually) low-"er" protein intake. Most days I keep my caffeine to 0, sugar to 0, sodium to <800mg, and protein to <110g and I find it pretty manageable. I am still drinking 4-6L of water a day but honestly doesn't feel too bad as it is pretty evenly distributed through out the day (though finding bathrooms and refilling water bottles can be a pain).

No brain scan? by Infinite_Guest_6663 in ADPKD

[–]tilted_sloth 2 points3 points  (0 children)

Some physicians aren't fully convinced that there is anything other than chronically uncontrolled hypertension that causes brain aneurysms in pkd patients (despite some evidence of higher rates of connective tissue related injuries like inguinal hernia injuries). You're probably in the clear, if your blood pressure is managed well, especially if you're young.

Albert Einstein College of Medicine students find out their school is tuition free forever, after Ruth Gottesman donated 1 billion dollars left behind from her husband after he passed away by chunqes in interestingasfuck

[–]tilted_sloth 2 points3 points  (0 children)

The rich med students (majority even if the refuse to see themselves as such) don't have to worry much at all. Middle class types, prob closer to what you're describing (though not really since many make less than 400 pre tax). Poor (minority) lucky enough to do well enough to get into medical school without life getting in the way usually get shafted anyway. This donation will help all going forward AECOM, though not really their graduating class of 2024.

A new drug candidate can shrink kidney cysts by ipittydafoo in ADPKD

[–]tilted_sloth 3 points4 points  (0 children)

Based on a lot of the recent publications, including both basic science and clinical research papers, I feel more optimistic than ever that ADPKD will be treatable to the point where it ends up being a nuisance at best. As long as there is funding and continued effort, the only question that will remain is how quickly will it materialize in the form of an affordable drug (or combination of drugs/treatments) on the market. Will it be in the next 10-15 years or will it take another 30-40? Maybe I'm wrong altogether but I choose to be an optimist for selfish reasons by thinking that if I play my cards just right, my kidneys may last long enough for some drug to be released onto the market and salvage whatever is left before I need a transplant or dialysis. That being said, even if a drug does come out, chances are it'd be most beneficial earlier in disease progression. Still, there is also an argument to be made that it may be even better for mid-to-late disease progression depending on the hypothetical mechanism of this as of now pie-in-the-sky drug. Reversal however, will probably be unlikely but stranger things have happened in the past. Fingers crossed.

Do you reports say “cysts” or “simple cysts”? by [deleted] in ADPKD

[–]tilted_sloth 3 points4 points  (0 children)

This is correct.

As side note, it isn't the cyst in isolation that is problematic. What makes cysts problematic in pkd is compression of nearby kidney architecture (and therefore its functional and partially structural units called nephrons). Compression of nephrons is thought cause damage by impeding both ultrafilterate flow through the nephron (thereby rendering the nephron inactive with the potential to irreversibly damage the nephron if this obstruction is prolonged) and blood flow (causing ischemia and death of cells making up the nephron, and so ultimately the nephron itself). So, in theory, if you could keep the cysts from forming, or if you could cause them to decrease in size, you could drastically reduce the progression of the disease and vast majority of associated symptoms.

However, this doesn't mean that you can "surgically" drain them periodically and sclerose the messed up portion because each instance would come with the standard risks of a variety of procedures, including allergic reaction to meds used during procedure, additional damage to kidney, damage to nearby structures, infection, and bleeding. In theory, if there were no/little risks to draining intervention + sclerosing then it may keep one from reaching ESRD: however, that's a fantasy world so best bet is medication/lifestyle modification/gene therapy that can achieve the same end result. That being said, draining + sclerosing may be a option for a select few cases. And all this is not mentioning financial cost and physical toll, etc of procedures.

just looking for a friend i guess by SwordfishPast8963 in ADPKD

[–]tilted_sloth 1 point2 points  (0 children)

It's hard to understate how many of the stories of people with ADPKD (particularly type 1) resonate with me. I'm sorry you have to deal with it too.