Week Nine: Covid Comes to Fight

It had to happen eventually. After the European travel and jiujitsu camp, after the 4th vaccine, after two years of safety, Covid hit me. It hit me hard. I knew it would and frankly, I have worried about its long-term effects on my PKD, lungs and heart. Still, like death and to quote Tori Amos, “Can’t stop what’s coming, can’t stop what is on its way”.

I have to say that no matter what the politics of America likes to suggest, Covid is awful. As a PKD person, this may have been some of the hardest moments of my days during the past few years. I had five days in absolute bed rest with maybe only an hour of meal preparation a day. Nothing felt ok. Nothing felt like it would ever be okay again. I had fever. I had some serious pain. I had nightmares wherein I felt messages that my dna was being rewritten in the night. It was horrific. I still feel like that may have well happened. All of that being said; I was healthy and ready for Covid, at another moment in my time this might have killed me.

So…yeah. How about the Ren.Nu program? I am not sure what to say other than nothing mattered more than a Snickers bar for about 5 days. I had no appetite, ate nothing except for sugar and got maybe 700 calories a day. It sucked. I hated it all and the tealized at the end of it that I had lost my sense of smell 100 percent. I put on my favourite perfume before bed and smelt nothing. Now I understood why the room smelled but I did not know it. Losing your ability to smell is a disaster; not realizing that you had for a few days is disturbing.

Otherwise I am doing okay. I am still hitting 0.6 on my ketones and losing weight overall. I feel awful and have no desire to eat except for the most random of cravings and I just have to accept those despite the idea of diet. If I can only eat a double chocolate donut from Tim Horton’s on the ride to PEI, then that is what it is. My calorie count is tiny, so whatever. I need to just get through Covid; I am not there yet.

I made it home to Prince Edward Island after two days of driving and it will take a few more days to get back to normal. I also officially signed up for the World Masters in Las Vegas next month despite all common sense. The game is afoot and all I can do is play.

At the end of this week, I feel a mess, but I also feel pretty solid. For me to sign on for Worlds while reconfirm Covid must mean that I believe in my dietary lifestyle changes and the way I am moving forward. Let’s see how it goes, but despite the awful physical challenges of Covid this past week I feel like I have a program that works to get me to the other side. Not bad, not bad at all. Eating lots of seafood and avocado on the Island, and made it to a jiujitsu class yesterday.

However, my lungs and heart are just not normal. Took a LOT out of me to do a 5km run and the class at Gracie PEI, but I also felt like I needed to push my body a bit to recover. Apathy can create entropy in body systems sometimes.

The Negative: Danger of Worst Case Scenario Thinking

Life is brilliant. As I spend my last days in Europe, I cannot help be appreciate that this all could be gone in a blink of an eye for me. When I was younger, I was struck by the pressing nature of the need to travel while the world was expanding, because history dictated that it would contract again. Japan, Russian and China have closed borders at the turn of the Victorian period, but in 2020 the whole world closed. War is on the horizon for a place like Estonia and who knows where China will aim its dreams. I was concerned about even coming to this camp with Covid still lurking and the war in Ukraine being not so imaginary for here. My wife’s family left here at the end of WWII for a reason, and I feel blessed to have been able to come here twice in recent years for jiujitsu camps.

I know now that I will never get a safe chance to visit China or Russia based on their human rights infringements. The Trans-Mongolian Railway is now a pipe dream of an adventure. Africa is out as well as it has become a melting pot for viral mutations without full vaccine strategies. I do wonder what opportunities Phoebe will have as a world citizen and what I can do in my lifetime to help her develop as a traveller. Two decades and I keep finding ways to make this easier.

Money helps. It helps to be able to afford refuge without sheltering yourself from too much of the reality. Eating Big Macs and staying a a room serviced Four Seasons accomplishes less than nothing. However, having the funds to buy access, transport, shelter, and the such makes travel easier. Now I am not rich, by any means, but I leverage points, buy long term quality items for travel and love grocery stores for the experience and cheaper food options.

Tech is now everything. You NEED a smartphone. You SHOULD buy data while travelling. You MIGHT consider versing yourself in the best apps to make any travel easier. For this adventure I needed to load up Two airline apps, ArriveCAN, and Bolt. TripAdvisor is more used than Yelp in Estonia, so on it went. Wallet became essential for accessing hotel room codes and reservations. Bolt was ubiquitous for accessing scooter or taxi transport. Getting a 49 year old to decided to hop on a green scooter was a challenge, but Bolt actually made everything easier. But, man, QR codes are everything now. While I am glad I did not upgrade my iPhone yet, I will when the new 14 comes out. Tech is essential to connecting with people, sharing info, footage collection, and just finding your way around a beach town where the idea of the English grid system is simply not present. Data seems to be costing me about $15 a day here, which adds up, but the ease of travel and less wasted time/money make up for the costs. I do appreciate being able to call home without speaking to operators or dialing in weird codes. The world has changed since my first trip to the UK when I was 21.

Getting to the airport or even the Bog Walk was made a hundred times easier using the Bolt app. I never needed cash, I could find my driver and it all seemed way easier than Uber (which I avoid in Toronto). I hate taxis, but somehow all things Bolt seemed like it had gotten things right in Estonia. Now I would not ride a scooter in Toro to, but then I have my Ducati Diavel for rides in the downtown core.

Now I did make a few calculated errors like buying the camp meal plan (still better to lose a bit than possibly not have food), forgetting my camera battery in the charger at home (so lugging an expensive lens and body for no reason), drinking too many Chimay Blue on the first night of camp with Katy and Angel, and thinking that I could do keto on this trip. If that is all that goes wrong, and I get home in one piece today, then that is all good. Overall, I feel pretty good about this trip. While I did nothing crazy like going swimming in the big pond or party with the Globetrotters, I made those choices for kidney reasons and that is necessary if I am to keep travelling in any near future.

Which brings me to the elephant in the room: how long can I hope to travel with PKD. Santa Barbara Nutrients posted the above image on their Facebook feed, and, frankly….I HATE this image. I simply hate it and always feel the worst thing that medical professionals can do is throw out the old “worst case scenario” to educate patients or the public. The idea of carrying around 60 pounds of kidney weight and having all of that internal pressure in my body just…well, makes me want to give up. It does. While different it is akin to telling a pregnant woman that she might need to carry a dying baby that will keep growing and may never be removed. It is not pleasant or all that helpful.

How does this relate to travel? What about jiujitsu? If I end up with kidneys and cysts of that magnitude, then sitting in economy is over. If I end up on dialysis, then travel is over. If I end up with either of the above two, then jiujitsu is over simply because I will no longer be able to invert or take pressure. So, yeah, the infographic is depressing AND I do not believe that is a positive way to educate about PKD. Maybe I am foolish, but I firmly believe that people need to hear about success and that there are ways to slow the progression of the disease. Maybe I am wrong, and time will tell, but I see that intermittent fasting, ketogenic diet, lower calorie intake, consistent exercise, positivity, meditation and connection to community can improve the outcomes. I may not beat Death by PKD, but then no one beats Death. I am not aiming for that; I am trying to hang out with Life for as long as I can in a managed, thoughtful way. I have too much to live for to simply give in to the voices who seem to surrender to the inevitable.

I do appreciate those readers who have taken a moment to click a like or make a comment; not for any “social media” gain, but rather because hearing that my writing reaches others with PKD makes this type of writing seem somewhat valuable to the community. Now I get it; not everyone is going keto, training jiujitsu and what not, but maybe, just maybe, a reader feels a little better, tries some kale for the first time or starts meditating when the anxiety hits at 2am like it has for me during much of this travel adventure.

I feel like I have about another 16 hours in transit and have already been fasting for 20 hours, so not eating on the final leg of the journey might be a little over ambitious, but we will see. I am not moving much on the flights, so it is not like I am going to starve. Seems like a good plan for now, and frankly my kidneys could use a break from the Estonian diet. The path is long, if one is lucky.

Week Seven: Jiujitsu in Estonia

It remains hard to believe that I am still able to train Brazilian jiu-jitsu with Polycystic Kidney Disease after five years since the diagnosis. Frankly, most doctors would tell a normal person my age to stop; they have told me in the past that it all seemed a little too much, but then that is to be expected: most people see the idea of a combat sport to be for crazy sadists. Most people might be right. But then again, jiujitsu has kept me stable and with purpose since I began seven years ago, so it has a deep intrinsic value within my paradigm.

In fact, one of the main drivers for me to join the Ren.Nu program was so that I could regain some of what I lost through Covid and three sclerotherapy procedures last year. Some of the loss was actually a weight gain that came from being unable to train, find the fresh food I knew I should be eating and that added to blood of pressure and stress levels. The reality is that in my experience, the mental health toll it takes on patients is quite devastating, relentless and exhausting. To know that Death or dialysis is waiting just down the road is not a cozy-comfy feeling. Ahh, and most doctors are not really able to help much in terms of answers, positivity or timelines. We have heard the drill: drink water, eat better and good luck. But what if there was something tangible that you could arm yourself with, a bit of armour and knowledge?

I guess that is where the Ren.Nu program filled a whole for me at this juncture. It is a bit of armour that I can take with me for the long haul, and that might make all the difference. Who knows? What I can report is that I am learning and adapting my food intake in a way that works for me. Will it keep working? Will it solve some issues? Again, I am not sure if that is the point. The endgame is not the point, rather the moment is the point, and right now the program has given me some strategies to implement so that I can travel to Europe to train 3-5 hours a day with some beautiful monsters. I can move. I am not feeling too much kidney pain, and my recovery seems reasonable for the next day. For my mental health, to be able to rejoin the BJJ Globetrotters for another camp is almost priceless, and a prize for making to here, through Covid and through my sclerotherapy sessions and my wife’s open heart surgery last August. I am still here.

Food is a mix of good and bad. Good luck finding an avocado in Parnu. As a Baltic state, Estonian food is fish-based with some pretty healthy vegetables, dark breads and alcohol-expected. For the week I signed up for the vegetarian meal plan, which means that I can get vegetables and fruit three times a day. Otherwise, my options are restaurants or convenience foods. I am doing my best to hydrate, eat fruits and vegetables, lower my meat intake and accept that I am burning through calories all day long. If I do not eat carbohydrates this week I would not make it without injury. Now that being said, I am really trying to always make the healthier choices at every meal knowing that it will affect my return to strict keto next week. It is not a zero sum game where I can just eat cheeseburgers, drink beer all week and hope for the best. I can do a tiny amount of that, but frankly, my body does not like how I feel after or during such “cheats”. I crave fresh food and fibre right now in lieu of fast food or heavy meals. I will consider that a win.

Food intake. One interesting idea that I am reflecting on is how much food I need and what I need to eat at camp to be able to train each day. In regular life I do not eat that much, certainly not three meals a day. Here, I need to eat three times and a reasonable amount for my body to be able to do 2-3 classes a day/rolls. I feel swollen a bit, but also do not have the normal pain I have from one class at home. Anyway, I will be glad to eat normally (keto) again when I get home. Carbohydrate-based is necessary for this much training so that I do not get hurt, but I always feel like there is no space for my kidneys. I think that I should aim for one or two times a year where I train like this and then for the remainder, training should be either less traumatic or few weekly sessions. Pacing while keeping consistent may be my best way forward with PKD….that being said: everyone is trying to kill me.

Maybe the best part of the week was meeting old friends and new ones who could not care less about my kidneys, but rather acknowledge that we all have our own demons but only a few recognize them. I did 8 classes and 14 rolls in the week, which is good but not insane. Generally, my kidneys held out. There were a few moments while wrestling or in a round with much younger guys that I felt clear pressure or pain, but I just stepped it back a bit or stretched through yoga poses for the hour instead of participating in the next class. I knew how to say no to the little voices telling me to push on; going too hard could always compromise the remains of the trip as I do not exactly want to be in a hospital or dental office in a Baltic state as a foreigner explaining how I hurt myself as a person with PKD.

I am on bottom

One highlight of the week was being able to spend an hour in a private lesson with Estonian iconoclast, Priit Mihkelson, whose defensive position system has been the backbone of keeping me (and my kidneys) safe for the past 4-5 years. Basically, I am most vulnerable through my abdomen for cysts to explode from impact and pressures associated with jiujitsu. Priit’s system, however, offers high effective and perhaps counterintuitive ways for me to protect those areas, defend, escape and counter-attack. The one challenge is that it is hard to build a foundation from video instructionals only. I have done pretty well with players who are not black belts, but there were holes that I started to experience since moving gyms. The hour where Priit rebuilt my Running Man position properly, guided me through a proper transitional movement, and improved a few others made a huge difference, which I felt immediately afterwards. I am sure he thought it strange for me to ask for a private lesson on this, but it will keep me on the mats and able to train safely for many more years.

Finally, camp is over. I survived with surprisingly little inflammation or injury. Sure, I feel love me I have some structural weakness but that is more based on just not being on the mats this much on a regular basis. Breakfast this morning is happily just a black coffee, and THAT feels so good. Frankly, having to eat so much just to get through training was brutal. I no longer want to eat carbohydrates, sugars or even meats in the way I used to, so I expect the transition back to ketosis to be fairly straightforward. Some intermittent fasting on the flight home on Tuesday should start me off right as long as I bring water on the plane with me this time. It will be good to get home, it will be nice to actually be able to attend a Ren.Nu session live again, and the rest of the summer should be much easier on all levels. One final moment that warmed my heart was seeing video of my daughter’s first real jiujitsu class at Oshawa BJJ this week. We were able to start her off with world champion, Janine Mocaiber, for 5 private lessons to get her started to encourage her. While we do not know if Phoebe has PKD (nor do we want to know until much later), perhaps jiujitsu will give her a way forward through the impossible like it has me.


Week Six: The Disasters of Camping and Keto

No one said it made sense to go camping while changing over my eating lifestyle. But family needs sometimes are more important than my own, and both my wife and daughter love camping at Arrowhead Provincial Park. I thought I was prepared for the challenge of eating on task, but camping outdoors for a week with only processed foods is not good for anyone.

First of all, the apps we use for the Ren.Nu program, Cronometer and Better, do not really function without cellphone data. Without an accurate way to track my daily macro and caloric intake, I was doomed to fall out of ketosis. There were a lot of spinning balls while I tried to add food into the phone. Eventually, I gave up and just tried to do my best. My best is not good enough for science yet, but all things considered I did okay.

Second of all, fat sources like avocados and cheese do not do well at a campsite. Dehydrated foods with high carbs do well, as does a lot of junk food. Throw in some bacon and eggs, and you get the idea. It did not help when family was pounding back S’mores, but I easily avoided though. Potato chips or a beer to offset the back pain from sleeping on the ground, less so. In the end, I came out okay, but not great. It was a good reminder that while this diet is so good for me, generally, in terms of how I feel, it does not do well without the comforts of predictable food sources or routines.

I was able to meet with my nutritionists for the midpoint meeting to talk about positives and ways I might improve my intake. I took away some great ideas about carb loading before training, about when to test for ketones and how to include more fibre into my diet. I do find these meetings with experienced nutritionists useful for bouncing ideas back and forth, and they have made this all make sense in a bigger picture for me.

Which brings us to international travel…I hit the road on Friday to fly to Estonia for a weeklong jiujitsu training camp in Parnu Beach. If camping was bad, then air travel is a disaster! I have travelled far and wide over the years, but at 49 years old, sitting in a packed plane for 7 hours over the Atlantic without more than 2 cups of water provided is a mess for me. All of the food is cheap, carb-based meals and the lack of movement plays games with the voices in your head; like “what the HELL am I doing HERE?”

Fortunately, all of the meditation and mindfulness work I have done to help cope with the stress of tests, sclerotherapy procedures and MRIs, helped with putting those voices mostly to rest. I finished watching three movies I had half-watched due to my 5 year old’s control of the television, and just sat with my thoughts. I felt awful by my connection in Munich, but despite so many other people having horror stories for cancelled flights and missed connection, I made it to Tallinn with one hour of sleep and not much else.

The past 24 hours in Tallinn have been great. I was able to sleep for about 14 of those hours in silence at a cool shipping container hotel, and walk around the city. I did need to overload on carbs at lunch while I waited for my room to free up, but that helped me sleep for a few hours. My digestive system did not approve of the whole affair, but I should be fine moving forward. At the moment I am eating smoked salmon with water for breakfast, and should be able to eat more cleanly throughout the week of training. Now I did choose to eat at my favourite restaurant in Tallinn last night, but I tried to keep that somewhat clean: smoked salmon with trout eggs to start and a nice, local beef tenderloin with celeriac and carrot. I did eat the house bread with lots of butter, but not t is a special loaf made in-house with molasses, ginger and pumpkin seeds. It is to die for.

Time for me to start the hour long walk to the bus station, but the next week should be interesting. I will gain a good sense of how my body handles the load of training each day again, and I can see how I can adapt to travel in terms of my diet. Now I did not take KetoCitra with me, as I simply did not want to deal with border control in the EU with a white powder. I do have my Keto-Mojo though so that should give me a tab on my blood levels for glucose and ketones. The key takeaway from this week is both that travel is not easy with the diet restrictions, but struggles are not failures. I continue to learn how my body feels on keto, and frankly, how much better that is in general in comparison to a normal carb-based diet.

Week Five: Making Better Choices As I Hit my Stride

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.

Victim Positions: Denial, Anger, Acceptance and Creative Non-Victim

It has been over two decades since I would have considered myself anything close to an academic, but some books, such as Margaret Atwood’s Survival, have stood with me along my own personal journey as philosophical ways forward. While it was an early, theory work by Atwood, the book has kept me aware of how we all need to progress through the challenges that devastate us throughout our lives. For me, Polycystic Kidney Disease has brought me through the whole gamut of emotions just as a misdiagnosis of bipolar manic depression and my jiujitsu training has taken me through the highest bands of the human spectrum and the lowest depths of Hell. In the end, I strongly believe that the greatness of the human condition is to experience as much of the bandwidth, to create the greatest surface area that one can with his life, is the goal. As Tennyson’s Ulysses asserts: ” I shall drink life to the lees!”

Now this particular blog entry is not really about PKD. I write one entry a week now to explain my experience with the Ren.Nu Program out of California and a ketogenic approach to dealing with the disease; but really, this is a personal blog to reflect on my progress through jiujitsu, which for non-practitioners is basically a combat art that puts one in the most uncomfortable positions imaginable, under pressure for rounds upon rounds. If you cannot imagine another human’s sweat dripping into your pinned eye socket or feeling an oppressive weight upon your stomach for minutes that feel like hours, then you need to live a little to get closer to death. Basically, it is mindfullness in its most profoundly awoken reality. When I explain it to others who do not roll, I often say “Your most horrific fears and places of discomfort are where I have learned to hang out and practice my calm, meditative breathing.” It gives me a massive advantage in this game called life, but it does demand a heavy toll of passage. In terms of Atwood’s positions, it is my way of becoming a creative non-victim.

Jiujitsu has gotten me through some claustrophic MRIs. Jiujitsu has helped me deal with the equivalent of a guitar string being inserted into my abdomen to perfrom sclereotherapy four times, and it has helped me deal with having a tube hanging from a cyst for a week out of my abdomen (my greatest fear). I am still here, and that is why I spend so much time meditating, reading philosophy and training to learn how to destroy non-trained human beings by strangling them or ripping off a limb: it brings me peace in the way an actual warrior finds peace in the fog of war.

So how is my jiujitsu these days? It has been an interesting year. I have gone from the Covid-era to a post-surgery era to being a teacher era to being the worst student in the room (but it is an amazing lion’s den of a room) in a few hundred days. That being said, I am about to embark on my first return to a BJJ Globetrotter’s Camp in two weeks in Parnu, Estonia. Estonia happens to be where my wife’s family escaped in post-war, Soviet occupation. It is also a really cool EU country where the JitsVulcan, Priit Mihkelson hails from, and it is his system of defense that I use in my rolling to keep my kidney’s safe against large men (250 lbs) who are trying to kill me.

Now the last time I trained with the Globetrotters, I was just awarded my blue belt, was naively heading to compete at World Masters 2019, and was super-excited to have some time with my friend Angel from California who I met in Iceland. He showed me this lapel guard called Squid Guard and we became instant friends. In the space between I have worked hard on the lapel guard, I trained in a cold garage wearing socks during the two years of Covid in Toronto, and I dreamt of one day being able to just hang out and be a part of a Globetrotters Camp one more time. It is funny, but I remember every damn class I have taken at these camps. From meeting Carlos Machado to being a poor uke for Chris Haueter to having Chris Paines pin me for a whole round just by pinning my elbows together, I made my way through Iceland despite being sleep-deprived from our first year with our daughter. The next camp a year later was funded by selling a bass guitar, and I got to learn some lapel wizardry from Mike Van Dammen after a hilarious drinking session about how I ate nothing but puffins in Iceland. I ate pig knuckles with Ben from Japan, the best fried chicken bao with Angel and went on a Pirukuud tour through Tallinn. What did I take away? I built a reasonable open guard and then vastly improved my leglock entries with Charles Harriot. Heading into next week’s camp, the sky is the limit even if I just want to be chill, hang out, love being alive and see if Christian Graugert has any new “jiujitsu for the beach” moves.

What is my game like these days? Ahhhh. Arrggh. Ummm. I play a lot of Running Man to Turtle a la Priit these days at Action Reaction MMA. Those two positions I have down to black belt level, but I need some kind of Hawking and a better Panda (specifically to avoid the Bow and Arrow Choke) to round that part out. My top game is a knee slice based on a seminar with Gui Mendes, a lot of time with my Brazilian coaches, and some Gordon Ryan instructionals from when I used to write for BJJ Fanatics. Once I pass, I am about riding mount for the Ezekiel, armbar or cross collar choke. It is based on a lesson with Kurt Osiander, an instructional from Roger Gracie and a Globetrotter class from Christian. The game I wish I could play is more like a Margot Ciccarelli Underworld approach to off-balancing with some Keenan lapel guard and Ryan Hall leglock game. I am not there, but I will try nonetheless as an almost 50 year old male.

The camp will be one thing that I have seen as a crack of light through the darkness for the past year. It has motivated me to try the new diet, lost 12 pounds, train hard and be positive in the face of so many places where I could be in denial about my skills and weight gain. I could just be angry and hate the world. I could give up jiujitsu or stayed at an easy club with status. I could have just accepted my doom as sooo many other PKD warriors have had to: I have a disease for which there is nothing but a long road to dialysis and that is that. Instead…here I am, a creative, subversive non-victim ready to keep ducking the executioner and trying really, really hard to offer the community another paradigm of what it means to be a warrior, a hero.

To end, here is a little clip of my school end song to send off the rest of my peers. I chose David Bowie’s “Heroes” as that is what resonated most at this moment. So thus begins the summer, I hope the hundred of readers who have found this site throught Dr. Weimbs continue to follow until the summer’s end.

Week Four: Angels and Demons of Ketogenic Diets

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 Two: No Internal Spark

Part One

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.

Part Two

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.

Magic Spoon Cereal

Part Three

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.

Week One: Chasing Ketosis

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.

Through the Fog of War: Returning to The Way

Jiujitsu is filled with truly talented individuals, and yet it leaves a wake of fallen casualities. Since I began practicing BJJ I have seen hundreds of training partners disappear from the mats; some return, while some simply are missing in inaction. Injuries, life responsibilities, disappointment with where they fit on the belt hierarchy and a myriad of other reasons take people away from whatever the reason that they chose to begin the journey. It might be possilbe that a few individuals had meagre goals for their participation and once that blue belt was achieved, the rest of a long, stuggling path seemed pointless.

As an educator, I tend to understand what motivates students to thrive, achieve and participate. Positivity, personal recognition, specific grades in an area of passion and even peer pressured support are all routes of engagement that can keep students in the classroom and pushing towards understanding. What seldom works is negativity, relentless struggle, promises of careers or Ivy League schools, or angry parents who always want more from a child. Upon reflection, I think our mats also function on the same foundations. If you want to keep a student or training partner, then they need to hear positivity about what is being done, feel connected to the other members of the academy and perhaps most importantly, feel like he or she is making progress in the right direction towards goals. Safety, both physical and emotional, is possibly another factor that we seldom speak about during the “grind” of training, but no one wants to deal with bullies or ego-maniacs trying to show “How dominant I am, Bro. I am barely even rolling hard because I am also humble”…as they rip an arm in a kimura or perform their “signature move”: the flying knee on belly cartwheel to inverted triangle choke. Ta-dah.

As I move forward at a new jiujitsu school in Toronto, Action Reaction MMA, I am looking for those people who can offer me a space from which to continue to hone my skills and learn more about this art of movement. I will avoid the negative gossip. I will ignore the brain wondering about promotions or belts. I will direct my own goals for myself. I will enjoy my time rolling and learning on the mats in the year ahead; fun and positivity are my main purpose this year, because that is what I need to stay on the tatami these days. I do not need Bros who need to validate themselves on my body. I do not need to feel like conspiracies are afoot about who deserves that next belt based on that last roll with an upper belt half his size and twice his age. Jiujitsu is not about fighting hard, but rather it is about avoiding strength through technique so as to increase the chance of not wasting energy before the clock has run out. And some days the clock runs for round after round after five minute round.

I am always surprised how one cautious, heart-wrought decision can suddenly push one off in a new direction. Once I found my new gym and signed up for a year, I also was able to procure a spot in a new ketogenic diet program tailored towards people with polycystic kidney disease. While the cost will be somewhere in the $2000 for the 3 month program, I feel like it is a great opportunity to lose some of the post-Covid weight and ensure that what I think is a healthy diet for me is also a healthy diet for my kidneys. It is going to be a bit of a long road through some hungry moments when cheeseburgers or poutine calls my name, but the benefit of being able to even spend one more full day out of dialysis or kidney failure with my daughter and wife make the challenge worthwhile. Who knows, I might even get to Lightweight division by the time World Masters rolls around in Septemeber.

The second step was to commit to the upcoming BJJ Globetrotters Beach camp in Estonia this July. I bought the camp ticket last Spring, but with a pandemic and war on the Eastern front, it felt like I would have to abandon the trip for an easier visit to New York City to train. With these other two decisions, I found the will to take a bit more of a risk and head to Estonia for a second time. As you may be able to tell from previous blogs about my experience with their community, a Globetrotters Camp can be a life- changing experience if you love the idea of spending six days training with like-minded people from around the world. For me it has always been a place where I can reset, be reminded of how much I love my wife and daughter, and just focus on one thing for a while. I can just be me for a brief time each year.

So where is all of this leading me? I have absolutely no idea at the moment, but I can say that I feel more alive than I have in quite some time. Just having things to look forward to in a positive way, adventures with new people and mindsets has been truly invigorating. I do feel like I have some new goals forming; that for the first time since the pandemic I can finally plan with hope and aspire to pushing myself to do more than just show up, more than just go to my garage to keep learning independently for no particular purpose or goal. I know that I am still fascinated by some of the open guard and lapel techniques that I have been working for the past year. Connecting those techniques through movements feels like time well-spent. I also realized that I still have a place for no gi in my training now that I have swtiched gyms and have the camp coming up. It is much easier to bring spandex in carry-on luggage than kimonos. Plus, The Truck and Berimbolo entries are becoming easier for me post-kidney surgeries. Taking out a few cans of pop worth of cysts help with the inversion and stomach compressions.

I do know that none of this is about achieving a brown or black belt. Even if I am never promoted again, I made it to my ideal goal: purple belt from a black belt that I respected. The rest in terms of belt hierarchy and promotions is not really that important UNLESS my actual jiujitsu develops to that level. I need to grow into my purple belt and enjoy this moment, because in the end there will never be another purple belt stage for me, so I need to experience it fully completely. Others may fight to become a fictional king of their little mat fifedom, a kingdom where they sit like Macbeth and tell tales of how they, too, once were warrior. But I am no king. I am an adventurer or maybe a conjuror. I want to tap the sources of knowledge and run with the widest group of practitioners that I can before I die. I want to explore the depths and the widths of the art without fear, dogma or an ego which closes doors of opportunity to me. Maybe one day, my wife and daughter will join or re-join jiujitsu, but that is only for me to gently encourage as time passes. I certainly want them to feel safer when I am no longer with them, and perhaps in some sense that is why I continue to write: to share my hopes and fears with others when I am no longer here, nor there.

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