The relief of no longer feeling like I am starving cannot be underestimated, and that has made this week far more bearable in terms of the keto diet. I feel like what I am doing is accepting some of the differences in what I can eat, finding ways to substitute cravings for more responsible options, and not beating myself up when I just need the carbohydrates due to training. I am also experimenting with using KetoCitra as a way to stay in ketogenic therapeutic levels on those days I need the glycogen to replace what was lost in session. To put things in perspective: in a hard session I may lose around 1100 calories in an hour of Brazilian Jiujitsu and that involves every muscle in my body, from toes to nose. Monday I did a noon session and a seminar (total 4 hours), Thursday I did 8 hard rounds and a class (2 hours), and Saturday began with an hour private lesson. When bigger, younger, faster men are trying to kill you, the glycogen disappears far faster than say a 10k run or an hour of yoga. Think of it more like running while doing yoga as people try to strangle you. Fun.
So far the experiment is working well in terms of how I feel after and before sessions. My ketone levels could be higher, but then for me that might not be as useful if I cannot do the physical activity that keeps me focused and happy with life. I am not certain how I feel about the process in the long haul, but right now, this week felt so-able for a lifestyle, which it did not before.
I have also been able to thrown in two 16 hour fasting periods, go for a 10km walk and rest a bit after a harder week before school ended. Looking ahead, I have my MRI scheduled for September, have a week training in Estonia, go camping this week and also spend 3 weeks visiting family on Prince Edward Island after that. Warmer weather means that I feel less aches usually and Hope seems easier to evoke from something as simple as a bird chirping at 6am.
As you can see from my weight charts, my weight loss since getting ready for the Ren.Nu program has been steady; nothing too drastic, but steady. I feel like my body composition has improved and inflammation of my joints is less, too. Blood pressure has steadily improved as well and stabilized since starting the program. It had rise as 2022 began for no obvious reason, and I would not necessarily attribute it to Ren., but then it seems to follow the weight loss curve. for full disclosure I did opt to start taking 5mg of Ramipril in April of 2021 to take some load off my kidneys. While this was awful for the first 3 weeks, my body seems to have adapted to that with only a few random drops while exercising or in other unexpected moments. Worth the small effort on my part, and I take it before bed to avoid initial dizziness I had if I took it in the morning.
In the end, after five weeks, I feel like this may have been one of the best wellness choices that I could have made for my health. I remain skeptical, as everyone should about any programs, but just having some more information, a group to observe and connect with, and to feel less alone made it worth the costs for me. I do seem to have a LOT of KetoCitra at the moment, but that is fine, as it will get used eventually. I probably should try two servings a day, but the one double scoop feels “right” for now. I will not be taking it to Estonia with me, however. I simply do not want any hassle at borders or airport security given the insanity of current airports.
One stop solutions, all-in-one answers, and that damn screwdriver on your Swiss Army knife tend to leave you disappointed at the end of the day. I feel like ketogenic therary in its hardcore iterations may well be the same kind of experience; that being said, for me it remains the best game in town. Perhaps the hardest part of any diet remains the question of how sustainable it is for the body and mind over a long period of time within a certain social culture. It is much harder to go ketogenic in a colder climate where carbohydrates and sugars are the common response to a lack of fresh vegetables/greens and some darn depressing weather. Personally, my body hates the winter; I absolutely would rather live somewhere like Bangkok, Spain or Hawaii. However, even as I edge towards only 6 years before retirement, I know the value of the having a superb, almost accessible medical team with all of the hi-tech kit my kidneys could hope for. I feel fortunate to have been given three sclerotherapy sessions to drain four large cysts off my kidneys over the past year. How easily that might happen in Bangkok is questionable at best.
Now access to the best medical resources is one thing, but becoming a patient who seems like a good bet for such access is the hard part. If one thing drives me to stay healthy, lose weight, drink water, adapt my diet and maintain a positive mindset, then it is to appear like a better choice than the other patient who smokes, drinks, eats Cheetos all day long, and feels like a 5 minute walk is a vigorous workout. Survival of the fittest when in the land of the blind, the one-eyed man is king. But let me be clear: none of this can happen without helping to build a better PKD community experience for everyone. If I can help one or two people somewhere in the world to rethink their diet or mindset once they are diagnosed, then writing a blog about my experience or participating in the Ren.Nu program is the least that I can do.
So, how has this week been? This is my hardest week of the year, as my wife is chaperoning a Indigenous Awareness school trip on the other side of the country, my five year old daughter needs a lot of ice cream and shoe-shopping to cope with no mommy-time, I had 140 school reports to write, a jiujtisu class to sneak in. Very little sleep, massive amounts of caffeine and some familiarity with my old friend alcohol, would all be the challenges of a week like this, but to pretend that weeks like this do not happen would be highly detrimental when considering the sustainability of this diet. As the week came to an end, I was surprised to see how well I came out of it by Friday morning. Yes, I went over on carbohydrates. Yes, I am out of ketosis. But…and it is a big BUT, I feel pretty awesome overall. My body feels healthy and my weight is around 171-173 lbs of fairly lean muscle. Hence, the message that I took from the week is deeply founded in the reality that I can survive a week of less than optimum behaviours, thought I doubt that would continue for more than 7 days.
Perhaps what I found most interesting was that while my body told me that I needed carbohydrates, I readily compromised with the choices I went with. Instead of a hamburger bun, I would added 1/2 cup of brown rice to curried ground beef with dandelion greens. Instead of a nice piece of lemon cake, I went with some heavy cream and strawberries. There was no fast food options chosen, and pizza never appeared in the pantheon of my cravings. Maybe one idea to take away is that the idea of cheating is easier to deal with when your cheat options are still healthy by anyone’s standards. Yes, I know that the program swears off things like bananas, rice, almonds, spinach and red meat, but I personally feel that some of those elements should remain in tiny quantities while I am still functioning with fairly solid kidney function. That level of function will undoubtedly degrade over time, but a slower degradation is my personal goal. I am not attempting to eradicate my 50-100 cysts, I am just trying to outlast them to the end of my life.
As far as ketosis goes, I am mostly in a 0.5-0.7 low level for my ketones, and that is okay for now. Once my weight loss stops (it will once the love handles get eaten up), then I will slowly edge my ketosis up. Once I start being able to recover from the stresses of year end, it will be much easier to sleep a full night and a bit into the mornings. I only have a few days before the family goes camping and then I am immediately off to Estonia for a BJJ Globetrotters Camp. It will be pretty hard to tell how many classes I can do on any given day, but I feel like I can do 2-4 hours of camp a day with just some time spent watching from the mats’ edges. I am really hoping that the meal plan gives me a decent healthy factor of choices with the “vegan” option, but given the sheer number of calories burnt in a session, I am pretty sure that my body will just burn the glycogen before it can even settle in my muscles.
The opportunity to train with a large group of European players can only add more depth to both my game and open up a whole different paradigm to the martial art. I could also just use some fun, some conversation and a few days where I can be quiet. Train. Eat. Sleep. Train. It will also be super cool to have another chance to hang out with my friend Angel from California. Covid took its toll on our correspondance, but it will be reassuring to see how his game has evolved in two years passing. He was the first to introduce me to the Squid Guard and the lapel game that I have been working so hard upon over the past few years.
Week Four has been decent. I am not setting the world on fire, but I am settling in to the diet lifestyle in a way that finally seems sustainable for a long haul. Whether the blood and urine labs in September will confirm that this is the right approach for me remains to be seen. I suppose that I am finding my own way, and hopefully along the way I will inspire a few people through this blog to find their own way. Whether that involves KetoCitra or keto or calorie counting or meditation or whatever, the point is that we can all forge a pathway towards a slightly improved health outlook. For my own part, it has been quite a long haul with a lot of fear, anxiety and negative surprises founded in the fact that most doctors are not particulary good at giving any guidance to their patients beyond “there is not much you can do, so don’t stress and drink lots of water.” It felt like idiotic advice 4 years ago, and it feels even more irresponsible now.
Week three on the diet has brought me to many thoughts and realities about Polycystic Kidney Disease, and my place within it…perhaps. It has been a week of endings at school, continuance at jiujitsu and beginnings of the summer. So many personae and identities to blend: father, teacher, martial artist, musician, writer…
It is Father’s Day and I decided this morning to take a devil may care day on the diet; I do not want to forget that I am trying to stay alive to live and not eek out a meagre existence without experience or joy of a good meal with family that does not include Cronometer at the table. I also know not to let that line smudge so that I descend into a Hell of getting back to ketosis a week later. I never forget that I am fortunate enough to see a long horizon in lieu of death sentence on my PKD. I am in this game of Ren.Nu to make long term changes to keep me going as I am as long as I want. I also know that MOsT of these changes are positive, doable and will have a great affect on the quality of my life. But a great thing soon can become a cult of sacrifice and I know better; I studied vampire cults and identity construction for my Master of Arts at McGill University. Too much is often worse than not enough.
Enough philosophy. How has the diet been going? I think very well. I feel less dead at 4pm, though I have had a few headaches along the way. I enjoy my weekly text check-in with my nutritionist just to see what she sees. It helps and makes it worth the cost of the program. The KetoCitra is good. I actually like it as a drink. Caveat emptor: it is awful as a sports drink. I had some in the car before jiujitsu so I used it and ended up with a massive headache after 8 rounds of 8 minutes of combat. Bad idea, genius. The group sessions help remind me that there are others doing the program who have more and fewer challenges than I do at this stage. I am always interested to see the difference between Canada and the USA when it comes to food and medical experiences. The sessions are a bit of a slog, but they probably need to be.
I have been doing my own meditation program as usual with the Waking Up app. I spent a long time finding the best mindfulness approach for me as a way of letting go of the fear of death, pain and illness that comes along with PKD. I do not think I could have done the MRIs or the sclerotherapy procedures without Sam Harris. My preference, but also a suggestion for others. I expect to always use the app especially now that he has added lectures by others about Self, duality and Buddhism.
Jiujitsu has been rough. I have zero power still. Opponents have 100 percent and adrenaline. Still, this is what I do, and lost 15 lbs in a month have made my body so much more fluid. I am losing one session a week, but I did a 6.6 km run instead of the second session in 40 minutes just to get my body moving at a keto-friendly pace. With a week of day long training sessions in Estonia in a few weeks it is in my interest to find a balance between what I can do and what I need to do, both in terms of carbohydrates and exertion.
Ketosis is slippery. I am just holding on at the bottom end of light nutritional ketosis this week. That is fine for my current goals; I feel pretty solid, am losing weight and have a reasonable mindset, I think. From my experience before, things will get hairy in two weeks as those voice of “reason” start chiming in. People will say: “uhhh, you look too thin.” or “aren’t you too old to be doing this; you need to eat. !” I am fine with that. The beard had to go or I would resemble Rasputin pretty quickly.
What motivates me? My daughter had her first ballerina recital at age five. I want to be here for her as long as I can. I want to be mobile, pain minimal and active for as long as I can until I cannot. She mischievously asked me whether I would die from eating her candy this week; she wanted to know whether it had to be hidden, I think. Life is extraordinary, and I appreciate the struggle, because it gives me the beauty of a summer night motorcycle ride, a blistering blues guitar solo, a perfect Jiujitsu strangle or a profound conversation with a friend. I can avoid a doughnut for that, can’t you?
As I begin the second week of the Ren.Nu program, I have to admit that I feel like there is no life force in my body. While this may sound a little hyperbolic, the one thing that I find hard to explain to others are the days when I feel like there is no spark being ignited within my body. I feel like my kidneys become almost a heat sync for energy or that they are like the ignition in a car; no spark to light the fuel to create internal combustion. It kind of sucks. I should note that I sometimes felt like this before the diet began, but today is especially difficult. I imagine that it relates to my body desperately seeking glucose and turning to my protein to convert that instead of going to fat as fuel. That is what I think; but it may not be true. In my current diet, I am still eating too much protein even though my carbohydrates are around 30-40g. Regardless, this is an expected hurdle for me, and one which will take this entire week to sort out.
Perhaps the hardest part of a diet like this is the self-judgement that the Ego creates with failure to comply to with the exact macro counts. As this deprecation occurs, the Monkey Mind is constantly demanding carbohydrates, demanding “cheats”, and rationalizing all deviations from the planned course of action for the day. It is a reality that I encountered in 2019, but I am finding that the parameters of this “better” dietary change is much more challenging that the parameters I set out for myself then. In 2019, however, my goals were weight loss to get down from 170-163 lbs so that I could move from the Middleweight to Lightweight Division. I did not care about exact macros, nor did I care what effect the diet was having on my kidneys, per se. I only cared about making weight for Masters World, and I did.
This time around, I actually feel better overall than I did before. I am losing weight, I am dropping in inflammation, and I feel decent about my daily internal body cavity pressure against my kidneys. On the flipside, I feel too weak to train in the ways I had before, and I feel a lot more keto flu effects (and I am still not near ketosis). So what has changed? I expect that the Ramipirl (5mg) I decided to take in consultation with my general practitioner is reeking havoc with my previous protocols. Blood pressure has dramatically improved on the charts, but with the lower heart rate and pressure I imagine that I negatively feel the effects of the body fuel switchover much more accutely. Time will tell how things progress, and I see no reason to abandon ship.
The rest of this week has me on am end-of-year field trip with my 13 year old students. Eating properly while at a Hard Rock Cafe or a breakfast buffet will undoubtedly challenge my willpower to avoid carbohydrates and sugar, but that is fine. I already warned my colleagues that I may not be eating or drinking with them. Frankly, some rest in a hotel room or swimming in a pool might help in comparison to chasing my five year old daughter around until 10pm. I will continue to miss out on jiujitsu training, but instructional videos, yoga and the weight loss from the diet can compensate for a bit of that gameplay loss. My Ego had thought that I could still train full on, but avoiding injury from the lack of strength to resist training partners is probably a higher priority that pushing through.
After surviving three days with 120 twelve year olds on a Niagara Falls school trip, surrounded by candy, junk food and carbs, I am looking forward to home. I have been lowering my carbs and proteins while upping my fats, but still no keto. a little frustrating from the Peer to Peer pressure of hitting keto levels in the Ren.Nu group chat; since I could not make the session due to a jet boat ride, I watched back in the hotel at night. I am stuck at 0.3 or 0.4 m/mol.
Who knows if my body is resisting because it has been here before or if it has other plans for me, and frankly I have little control over that part of the game. There was a lot of talk about waves and tides in the mindfulness section, so to extend the metaphor: I am caught in the 0.4 current and I have to accept that and wait for the right time to start swimming hard. Might be a week away or tomorrow, but I cannot base my mindset on artificial targets. My journey, my Tao.
Otherwise the inflammation is still decreasing, and I feel fairly solid despite a disruptive week. A lack of decent coffee in Niagara has not helped with the sluggish fog of war that I continue to experience. A few days home, a 5k run and some yoga should help, but a small victory would help a bit. Not required, but it would help sway the tide
I guess that I should mention that I feel pretty calm for being on a school trip. More accepting, more mindful of my time and what I put into my body to get through the days of insanity. It is a nicer, more sustainable mindset. If I could just squeeze in some jiujitsu training then things would feel pretty good. I probably need to get my KetoCitra to two servings a day, but doing that at the Hard Rock Cafe felt kind of creepy from a teacher point of view, so I left that for home. Perhaps more exercise in my home gym and just general, easier fitness will kickstart things. We will have to see. Two more days before the second week closes, so all is not lost, all is still to come.
As the week came to a close, I finally hit moderate ketosis at 0.9 mmol/L. By all accounts this was a real struggle to get my body over to a fat fueling paradigm, but I definitely feel a difference in my energy and cognition. In the past two days, I feel less disgusted when eating greens with oils, have less of a craving for just meats, and my body seems to have figured out how to plate food in a way that actually meets the percentages and ratios I need for the diet. Vegetables are becoming more attractive to eat, carbohydrates less so (if only because I know how their suddent intake would make me feel again). The KetoCitra tastes pretty good in contrast to the lipids of the diet, and herbs from my garden are making the blandness of some items come alive. Basil, chives, fennel and tarragon all go pretty well with items like salads, butters and eggs. Cheese is probably the best way for me to add the fats that I was missing at the end of the day, and being in Canada there is a whole myriad of French cheeses which are high fat and low industrial processing. Pistachio nuts and walnuts are another addition to plates that give a bit of fiber and fullness to the mix.
I would not say that I necessarily feel like I can hit the jiujitsu mats at full force yet, but I do feel like a run or a workout in the gym is more than feasible, so I may do that this morning once I finish the blog and my morning decaf pourover coffee. My weight is down to 172 lbs from 186 when I began the diet and was retaining tonnes of fluid. The LMNT electrolyte packets have helped with salt intake and I am supplementing some B12 and D vitamins based on the initial blood labs. My blood pressure is also back to the ideal 112/65 when I wake up (I do take 5mg of Ramipiril to lower the load on my kidneys). So I feel like my body has self-corrected back to the path I am needing to take for the remaining 10 Weeks of the program. While the internal spark is not fully lit, it appears that the engine is starting to turn over after being flooded for the past two weeks.
The past week has felt like a dog chasing a car, and I really see no end in sight. This marks the end of the first week of the dietary project I have been looking forward to working through for almost the past year. Basically, I have signed on for a 12 week nutritionist-supported keto-therapy diet out of California with the Ren.Nu group, which is connected with Santa Barbara Nutirents who produces a medical food for polycystic kidney disease, KetoCitra. It was a bit of a stretch for me to decide to engage with a sort of pre-clinical trial based on a ketogenic variant diet, especially when the totally cost would be around $2000. However, the reality is that the money is pocket change when one looks at his or her health. To me, the science looked promising, and considering my last attempt at keto allowed me to compete at the IBJJF World Masters in 2019 in Las Vegas, I knew there was potential. If I could even learn a few tricks, a few more ways forward, or at least come to understand the disease better, then the 12 weeks would be well spent. In a worst-case scenario I would lose some weight post-Covid and maybe feel a little disillusioned. As long as there are no voodoo rituals involving chickens and ancient spells pushed through cosmic crystals, I will accept the outcome.
I am a skeptic. I never gamble. I take risks, but only those that I am mostly in control of the main parameters. I also understand that Hope and Will can often “damn the genetics” and with a touch of science, magic is possible. Not Harry Potter magic or woo-woo New Age stuff, rather the unexpected leaps that a Carl Jung writes about in Synchronicity: the exception to the rules. Let’s face it, the rules seldom even make sense in our universe, so I see no real reason to expect all narratives to end the expected way; the best stories seldom do. They all end, but not in the way you expect.
How has it gone? Hmmm. Good question. I would say that I see positive changes in my eating, and I am back to being hyper-aware of my eating in a mindful way. The issues with water retention last month appear to be self-correcting, and I actually like the taste of KetoCitra. I had a tonne of blood taken for tests, and my initial results show significant improvements my eFgr and creatinine levels from March and November (probably based on my sclerotherapy procedures in December). I also feel super weak, brain foggy, exhausted and I feel frustrated with the challenge of balancing out a way of eating that meets the criterion of the program. At the end of each night, I am either too high or too low in calories, too high in carbohydrates, too high in protein, too low in fat or just hating the whole damn thing. The darkly toasted bread dripping with butter and jam calls my name. I just trudge off to bed and ignore the siren calls…for now.
Jiujitsu is probably the hardest obstacle to maneuver. It is a combat sport based on being fueled by carbs, caffeine and acai bowls. A single session of 90 minutes might rob me of 1100 calories and all of my glycogen stores on a normal night. When I do not have 1100 calories to begin with by then, it gets a little hairy in there when you get thrown in with some world-class black or brown belts. When the opponent is trying to rip your limbs off and you are fueled by avocado and a prayer…you get the picture. Suggestions always range from taking time off to doing yoga instead or maybe some gentle stretching; one of the main reasons for my work on my health is so that I can continue to train, so stopping training kind of defeats the purpose. Becoming injured by a carbed-up 26 year old at the end of a sweaty night also defeats the purpose. The dilemma ensues.
I do not know how other people are functioning through this first week yet. My ego tells me that it cannot be good for them, but then I am probably wrong. Other people can often follow the recipes and eat from a plan, whereas my brain demands that I use the recipe as a starting place and go from there. I don’t know; I will figure it all out by the end of the 12 weeks because I have to do so. Who knows, maybe it will get easier. Perhaps my nutritionist will have a eureka moment or my body will learn to perform on fat as fuel by the time I start my intense week of training at the BJJ Globetrotters Camp in Estonia in mid-July. Time reveals all, just as a butterfly flapping his wings in Brazil may cause the siren calls of carbohydrates to cease in my ears.
I should note that I already did a run with ketosis in 2019. I found that it was useful in terms of weight control, lowering of inflammation and pain, and self-esteem, but that it was unsustainable beyond a 3-4 month time frame. The body (my body) simply rebelled and said that enough was enough. Weight slowly crept back up with a bump in Covid due to the unavailability of fresh food in Canada, and no amount of exercise can counter social isolation, lack of community, and eating canned soup or frozen chicken fingers. I guess I see this diet program as my first decisive step back into the world post-covid. A hard, difficult step to be sure, but all great journeys begin in chaos and uncertainty.
I do have the distinct advantage of already having self-implemented a meditation routine using Sam Harris’ Waking Up app (by far the best meditation resource on the market). I have a digital scale (Withings), blood pressure monitors (Qardio), heart rate monitors, macro tracking app (MyPlate), an intermittant fasting app (Zero), and other tech that all integrate seamlessly on my iPhone. I have the metrics, but I do not have all of the answers.
Over the next few weeks, I will write a few reflections and see how my main health factors are progressing or declining: weight, stress, blood pressure, blood glucose, mental health, jiujitsu play, and any pains or aches in my flanks that normal come from the preceding factors. The goal here is not to write a review of Ren.Nu, Santa Barbara Nutrients, KetoCitra or anything personal about others. The goal is just to share my voice and perspective on a challenging disease which needs participation in groups like this if there is to ever be any long term progress. This week was about beginning the chase without ever expecting to hit ketosis nor having the car run over me. While there is great value in becoming a PKD Warrior (as I often see in social media posts), I feel that my true value in the community is as more of a magician or charlatan with cheap parlour tricks to entertain but provide riddles and rhymes to engage the little inspirational part of the mind. No warrior can sustain a war without end or purpose, but with a great story the weakest citizen can take down tanks and topple governments. With just a sprinkle of the magic that is a compelling story…anything can happen.