Thriving in My Third Year of Home Peritoneal Dialysis - Spring 2023

Thriving in My Third Year of Home Peritoneal Dialysis - Spring 2023


Welcome back to the chronicles of my third year on home peritoneal dialysis in 2023, the year I thrived and learnt to live my best life on dialysis.

Following my bout of peritonitis in January 2023, I found myself more lethargic and having difficulty getting back into the normal routine of things both with dialysis and work. My recovery and treatment of the infection felt quick in comparison to the stories I've heard about peritonitis. In my experience, it did not physically hurt nor take too long to recover from. Perhaps 2 weeks at most. However, what I did find was that my physical and later mental fitness declined in the wake of the infection.

The year I thrived and learnt to live my best life on dialysis

My Kidney and Lai (2023)

Nevertheless, Spring is one of my favourite seasons of the year, which has always been reflected in my personal life each year. As leaves grow back on trees and blossoms bloom on our fruit trees, so do I, and I enter a season of productivity, creativity and renewed energy! 

March 2023

🍞🫓🍕Baking Low Salt Carbs

A silent low point of Spring was that I was unable to identify the building fluid retention in my body due to reduced dialysis efficacy. However, at the time, all I noticed was weight gain on my physical appearance and increasing blood pressure. I had assumed, at the time, I was just eating too much salt in my diet and drinking too much water!

I decided to take action and picked up low impact cardio and light weights. I found this was an effective way to lower my blood pressure, albeit temporarily.

Unfortunately, you cannot exercise away failed kidneys and poor dialysis sessions.

However, in an effort to fuel my increased physical activity, I doubled down into learning how to bake low salt alternatives to all the carbohydrates I wanted to eat regularly, which was mainly breads such as crumpets, sliced bread, and pizza.

🧂How much salt can there really be in bread?

I calculated a long time ago that bread is one of the worst offenders when it comes to salt, and it's probably even worse from your artisanal bakeries.

Sourdough, I'm looking at you.

The NHS recommends an adult should have a salt intake of about 6g.

My Renal Dieticians, Nephrologists and GP have all said that with my high blood pressure I should be on a low salt diet. Which varies between practitioners from 2g to 3g.

That's like 50% or less of daily recommended allowance.

So... I challenge you to now go to your kitchen look at your sliced bread, your crumpets, English muffins etc and look at the nutritional information.

These days, supermarket packaging has the traffic light system on the front and list nutritional information on a per serving portion (slice, crumpet etc.).

Now look at the Salt % and then double it.

Does it not shock you?!

For Example

Kingsmill 50/50 has typically 6% salt based on daily recommended values.

For Low Salt Diet it forms at a minimum 12% of your intake ... PER SLICE!

When I have breakfast I eat 2 slices of bread which is at minimum 24% of my salt intake, you know that's if I'm aiming for 3g a day.

and then you're like who eats bread plain...

You can repeat this exercise with your many spreads and you can get some astronomical figures. It can go as high as 30-40% of your daily intake.

And in the grand scale of your daily intake this is just from your breakfast meal. All because you decided to have 2 slices of toast and spread of choice.

Ultimately, it becomes a cost benefit analysis of

"Is the % salt intake for this meal ( breakfast or perhaps lunch, sandwich lovers) worth the calories, satiety satisfaction and taste!?

For me, the answer is no.

I rarely ate breakfast and if I did it was one slice with unsalted butter or an egg on a weekend. Don't get me started on cereals and milk when you're on a low salt/phosphate diet and fluid restriction!

Saying goodbye to crumpets was the saddest for me. 20% salt intake per crumpet even with unsalted butter. 😭

Side Note:
I will never forgive Tesco own brand crumpets changing their recipe from 1% salt to 10% salt per crumpet. They clearly did this to go in line with all the big brands out there. I literally survived on those 1% salt crumpets through university.

Honestly, I should just write a whole other post about this, but as you can see there is a definite incentive to cut out processed bought carbs for a low salt diet. Reliable low salt carbs for me remains to be rice, grains and pasta.

Disclaimer: These are just my calculations/opinions based on advice I was given. Always consult your renal dietician or medical practitioner.

Every kidney patient has different blood results which dictates the restrictions on their diet.

This led to remarkable breakthroughs in bread making.

I learnt how to make no added salt steamed buns, enriched breads and pizza/focaccia dough. Technically there is salt in most raising agents so there's always a little salt knocking around but in yeast risen doughs, I think it's at its minimum!

It's important to note, I didn't necessarily eat these breads plain but because the base carb is plain you can go a bit more creative and salt intense on the fillings and toppings such as choosing pork over chicken, a mix of hard cheese and soft cheeses instead of just cream cheese etc. This all helps with keeping variety and having a palatable low salt diet for many years, particularly when hosting guests.

Of course if eaten plain it's basically guilt free.

From March onwards, I can honestly say the sensation of being full and satisfied was something that occurred more frequently. Up until this point, I did follow low salt, but in a way in which that wasn't the healthiest in that I restricted portion size of 'normal' food or cut food options entirely.

April 2023

🍽️🥘🍲Celebrations with Family & FOOD!

A massive part of my family, friendship circle, and I suppose humanity in general is when we celebrate, we come together and we eat big meals.

Particularly as part of my Chinese family culture, homestyle dinners are a big thing.

Our bank holiday, birthdays, even a typical weekend sometimes solely revolve around a multi course meal!

Which, I cannot lie, can be dull when you are on a heavily restricted diet. Low salt Chinese cooking is just not a thing in my opinion. Hence, when the cuisine can't fit your dietary requirements, portions are the only thing you can control in this situation and this applies to restaurants too.

Stopping soy sauce on rice actually had me cutting rice out of my life entirely for a while!

One of the hardest aspects of being on a restricted renal diet, particularly low salt, is that it limits your participation in these food oriented events. In my case I often felt a sense of distance in the festivities when it came to celebratory dinners and by extension my family.

However, my dedicated weekend training in bread making and low salt carb recipe refinement in March led to the most beautiful creation in our family which was the lowered Salt Char Siu Bao.

cross section of char siu bao. Low salt steamed bun + reduced salt pork filling

The beauty of this dish, for me, is that the steamed bun can be almost discounted as having low to no salt, which allows the sweet/salty pork filling my dad makes to be a little more decadent. Ok... there's no getting away with the fact that roast pork in 'bbq' sauce is going to be high in salt. It consists of the saltiest meat, and a careful concoction of sauces and spices for the marinade. But the saving grace of this dish is that it is a round, individually portioned bun.

It is very easy to count and control the amount you eat and the ratio of the bun to filling can be as you wish. This innovation to make low salt carbs was what allowed me to participate more actively in family dinners.

Moreover, the act of participating in the creation of an item on the table also allowed me to partake in the celebratory atmosphere and allowed me to be more present at meal times.

Additionally, making Hong Kong bakery style breads like the hot dog pizza buns that evokes nostalgia in my generation and something wildly exciting for the new was so rewarding. I haven't been able to go back to Hong Kong in years and my parents had just come back from holiday there. The only messages we ever received were food photos 🥲.

Amongst the many golden images of Hong Kong specialty buns and breads was this enriched dough hot dog that is topped with cheese and sweetcorn. The recipe, I had altered had no salt and became very sweet dough but was easily balanced against the frankfurter and mozzarella maintaining the sweet savoury components of the bread. Even though, I ate around the sausage, it was such a big hit at the family gathering that when my nieces and nephews return the next weekend they ask if there is any more.

I felt that I was able to connect and contribute more to the family weekends celebrating Chinese New Year, Bank Holidays and Birthdays alike without feeling like a bystander.

By the end of March, I was always planning my next dessert or side dish to add to the next multi course celebratory meal!

May 2023

✈️🚢🏖️Holiday FOMO [Fear Of Missing Out]

By the time May came round, I was starting to feel restless at work and at home. Sometimes, I think starting dialysis during the pandemic in 2020 was both a blessing and curse. It was a blessing in a sense that everyone was stuck inside like I was, but it wass a definite curse in that I became extremely cautious about going outside in public spaces and travelling.

So, in 2023, when we are very much over the pandemic and EVERYONE is going on HOLIDAY ABROAD, I begin to feel the FOMO! It creeps up on me every year since the pandemic but people go on holiday during Spring (April/May) as well as Summer and Christmas time. Slowly you see less and less people coming online on MS Teams at work and more bounced out of office messages.

This often left me feeling bitter because sometimes you feel like you are the only one working in your engagement while everyone is off on holiday. Once they return, you have to endure the holiday highlights chat. Honestly, I'm so petty, but I still remember suffering through the jubilations of someone's ski holiday. I don't even ski but I was envious.

It was also another long period of living alone with various family members, my parents included, going on holiday and taking advantage of half terms and pre-peak season tickets. Obviously, all this comes from a source of envy but the bombarding at both work and family group chats with holiday photos was insufferable.

🚗🛣️🏞️Did I ever go on holiday whilst on dialysis?

In short, yes but never abroad. I was always too scared of missing my transplant call and being suspended on the transplant list.

By year three on dialysis, I hadn't been on holiday abroad for about 4.5 years.

Autumn 2021 - I had a 1 week holiday in Wales, where I dialysed away from home in hotels for the first time. I was still remarkably strong in my first year of dialysis living off the fat reserves of my 23/24 self. We went to Snowdonia National Park and took the train up 2/3 Mt. Snowdon to hike to the peak and walked the way down. However, my most favourite hike was up to the base of Cadair Idris, and looking at Lake Cau.

Autumn 2022 - I had another 1 week holiday in Wales, exploring the Breacon Beacons.

Each year we would try to dovetail the free patient experience with the Young Adult Kidney Group Residential Weekend that is open to all (18-30) kidney patients alongside by one dialyse away from home holiday a year.

It probably didn't help that I was probably not doing too well physically. The fluid retention was identified but not resolved. I was on an increased day fill prescription but had not fully switched to the heavy night prescription until early summer.

The increased day fill, did put a little spring back in my step but I was never happy with the further extension of my stomach. I eventually became more tired and sick and just generally feeling very isolated at home. I was working in a paired down team in an empty home.

My YouTube channel, I had semi-abandoned at this point because I had really low self esteem and mood. The mix of fluid retention on my face, poor skin health and an even more extended stomach due to the increased day fill did not inspire me to film but the need to let out some of my frustration and melancholy and connect with the kidney community did not dissipate.

I hope to return to YouTube again in 2024!

Which is why during one night in May, I decided to start this website I've always been a lot more comfortable writing than speaking in front of a camera but I am probably more comfortable speaking to people than writing. I hadn't expected speaking to a camera to be so different. It's amazing how much we rely on that in person feedback on steering the tone and depth of a conversation!

From there, I began to fill my evenings on dialysis, writing for everyone who reads this today!


Concluding Remarks

Looking back, what I take away from Spring 2023 was the joy of actively finding ways to connect with my family through baking food that we can all enjoy together rather than just isolating and dissociating myself at the dinner table with my restricted diet. I made desperate but active attempts to improve my fitness and wellbeing through exercise and diet. I do wonder now sometimes if my lethargy was just not eating enough calories a day!

Moreover, what was really highlighted in April and May was the mood shifting within the country and the wider world that the Pandemic was really over.

Everyone was going on holiday and the impacts of being so isolated and fearful of travelling had started to have its effect. It led me to challenge my beliefs about travelling and going outside, which led to one of the most memorable and joyful summers I've had in all my years on home peritoneal dialysis.

Please stay tuned for Summer 2023 (June, July, August) !

‘My Kidney and Lai’ | Thriving on My Third Year of PD
Looking back through the seasons of my third year on home peritoneal dialysis in this 5 part series. The year I truly learnt to thrive and live my life on home peritoneal dialysis!

Missing a season? Here you go: Winter 2022/2023

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IGA Nephropathy confirmed at 21. Crashed into End Stage Renal Failure at 23. Now, I share with the world my 3 years lived experience on Home Peritoneal Dialysis and Post Transplant Living 10/10/2023