I did a lot of "one last time" things over this past month and I woke thinking about the thing I forgot this morning. Sushi. Rare meat of anykind is now a giant no...hard yolks even. I dig avocado rolls so no big deal in this regard.
Burnt (well done) lean beef is still unappetizing and I wonder if I will change to different protein sources. I have tried for a few stints to go plant-based in the past after hearing how they can help kidney disease (flimsy data, but…). I documented my [n=1] experiments well if anyone is interested. After a single nice week on this approach everything falls apart… energy levels, hormone balance and performance. Also, it feels like I am eating constantly.
A cyclic ketogenic diet (not a recommendation, necessarily—nothing here is) worked best during dialysis as I was able to control my “dry weight” very effectively. Dry weight is key marker in dialysis treatment you establish one and then the clinic takes off the fluid you retain between sessions. In general, the more they take off the worse you crash. I had a few idiotic incidents in the beginning when establishing my dry weight. 16 pounds lost in three hours and waking up to EMSA, for example. After I realized I had to take a more active role in this, I knew my numbers and double checked the staff’s math… I'm sure I was a favorite patient. Kenzie and Aaron can tell stories for days now, I am guessing. Aaron was my Tulsa PIC was my driver/bodyguard on days things went south. Towards the end I would come in at or only slightly under/over my dry weight. Doing so made the treatments from that aspect less threatening.
I am curious what my nutrition strategy looks like in a few months. We (Mom has been cooking for me) are being very disciplined/boring with my nutrition at the moment because with the high-dose prednisone I could kill four pizzas a day and still get up rummage for cake. The prednisone will dramatically taper off this next month. This is typically one of the drugs that living donor recipients don’t have to suffer through long-term. For deceased donor recipients it’s a mainstay, forever.
The nutrition section of the notebook you get (They call it the transplant bible) is surprisingly basic and my assigned dietician was thoroughly unengaged. I feel this way perhaps because when Mom and I went to the Mayo Clinic last September we had a lengthy discussion with the transplant dietician there and had quite the report… I will be leaning towards her advice as I didn’t get any locally. Perhaps the strategy here is to put out fires. I prefer a more proactive approach.
I will likely lose some her who aren’t fit/diet pros, but it is worth mentioning that while I find the work of Ray Peat fascinating even though my personal experimentations with his ideas were disastrous… like admitted to hospital disastrous. I have friends and peers that have embraced it’s inherent logic with seemingly positive results, it isn’t the route for me.
Due to absorption issues and the critical timing nature (8am and 8pm) of my new meds. I needed to decide if would eat with my Rx’s or not. Either is ok but it needed to be same each time for accuracy. I opted to not eat as I’d rather be hungry than eat when I am not. This sets a natural eating window between 9am and 6pm. Easy; as I am used to intermittent fasting and my Ayurvedic practioner friends would approve.
I’ll wrap by saying that I feel more curious than anxious about my impending food journey. There are some strict restrictions and restaurants will be seldom worth the risk as I have been warned food-born illnesses are my nemeses, but what a small price.
Anna Cannington has offered to be part of this program. As a kidney donor with a nephrologist brother (not to mention next level human) she will be able to provide unique insight into "other side" of the transplant process. It is particularly apt for her to join up as she is Dustin's Donor. To schedule a conversation with either of Anna or Dustin just connect with either of us!
Dustin was diagnosed with IgA nephropathy (Berger's Disease) in early 2007. He and his family know well the struggles that come with suffering kidney failure, dialysis and the transplant processes. Born from these fustrations and Dustin's love of strengths-based coaching (centered on what is best in people) comes the Kidney Koach program. This NO FEE program is for Renal patients, their families and nursing staff that want support, understanding and a little help on the path.