In which we learn about the body as a system…

Our bodies are a system – so many components that are dependant and linked to each other that you cant just impact one part of it in isolation.  The kidneys do so much more than clean toxins out from blood. They help regulate blood pressure; regulate acidity and electrolyte levels (like potassium, sodium and phosphorus) in the blood as well as playing a role in hormone production to keep bones strong and blood healthy.  As the function of the kidneys drop, its not just that toxins build up, its those other important functions that are impacted too – the most important of which is the regulation of potassium as this impacts the heart.

Do you see where this is going?  Bad kidneys = poor potassium control = heart problems. This is one of the scariest implications for me and that’s why it has been so important for us to be mindful of ensuring C has not too much Potassium (or sodium – the electrolyte black sheep) whilst I still get enough from our food. Cue scenes of us closely studying food labels in supermarkets and scouring recipe books for suitable interesting meals.

If you search the internet for “low potassium food” you tend to get a lot of food and meal ideas to help you boost your potassium with avocados, bananas, seeds, nuts and all the other trendy super foods – not what we were looking for at all!  There are also results that feature foods suitable for those with CKD (this NHS one being a very good starting point) but meal ideas were lacking… So I’m making up my own and am happy to share them (remembering this please). I’ll add recipes to the blog as and when I’m happy they are suitable for sharing – there wont be anything fancy, but hopefully it will go beyond boiled cabbage and chicken!

Other Tips

As well as looking for low sodium, low potassium foods and meal ideas, we have started these other habits to help monitor and be aware of what C is eating:

  • Using the MyFitnessPal app to record food and water intake.  This isn’t about monitoring calories, this is about being armed with as much knowledge about the food we are eating and being able to look back over the week and see clues in how he has been feeling that may be the result of food choices.  You do need to have the paid for version to monitor micronutrients, but its a very good app and worth it.  They also do a free 30 day trial and you can export meal diaries from the website if you are meeting with a dietician or a doctor to take a closer look at your diet.
  • Removing or at least halving the salt requirements from recipes.  Being a salt fiend I did miss it at first, but there is a whole world of spices and herbs out there for you to add flavour and seasoning without relying on salt. We also have stopped adding salt when boiling pasta and have switched to unsalted butter – small changes will add up.
  • Adjusting recipes so I  can add in things like sauces or seeds and nuts (or some salt!) after cooking but before serving so that I can still benefit from them but C can avoid them.

It’s been an interesting, engaging challenge to look at food in a different way and I feel more educated and aware as a result.  I’m not a chef but cooking quality, nourishing food that is not going to be a further danger to C’s health is just one of the small ways I can help and support him through this new land.

A brief history of recent times

Kidneys.  Not the most glamorous of organs.  They are not the biggest, they don’t quite have the high profile of say the heart or lungs;  they don’t have super regenerative powers like the liver and the most that anyone probably thinks about them is when they are a bit achy after a big night out on the booze.

That’s how I felt about them until my Boyfriend (who we will call C) had some tests done about seven years ago and was diagnosed with the very hard to say  IgA nephropathy (nuh-FROP-uh-thee) also know as Berger’s  Disease. I’ll refer to it as IGAN because it is much easier to spell.  Even when we first got the  diagnosis and learned about the potential long term implications, we didn’t think much more about it and the impact on our lives (other than C’s daily meds to control blood pressure) was minimal.

Then, over the years C’s kidney function – measured as glomerular filtration rate (GFR) – began to drop. Phrases such as “Chronic Kidney Disease” started to feature in our life alongside increased blood tests and a rising sense of this being something more that a distant potential threat.

The progression from Stage 3 to Stage 4 was rapid and happened over just a couple of months during the 2017/2018 Winter. We started then to join the dots between unrelated minor symptoms that became the sinister herald of more to come.  His itchy, restless legs; a constant tiredness and creeping lethargy; the bone deep cold that would not shift no matter how high we put the heating up, or how ever many layers C bundled himself up in.

Finding out C’s CFR had fallen to 19% was the trigger for conversations with his renal specialist to start to include words like Transplant and Dialysis – life changing concepts that drove me to sit up and really start taking notice to something that really was not going to go away.  I started to attend appointments with him and requested to be  considered for becoming a living donor. This far of distant danger was now sitting front and centre in the middle of my living room; putting its muddy feet on my sofa and showing no sign of going away.

And here we are now – about to face some serious, big scary stuff that I have no idea how to handle.  I’m hoping I can use this blog as a place to record our experiences; keep a track of useful things and start to share some of that with others. Because this is a terrifying place to be in, and no one should be here alone.

I don’t know what the future holds, just that it is coming whether we want it to or not – so I’m going to make sure I’m ready for it.