Ten things you only know about kidney disease when you live with someone who has it.

1. They often don’t look like anything is wrong with them. Unless they are already on dialysis or have other health issues it’s very hard to tell that someone is seriously ill with Chronic Kidney Disease (CKD). Some people don’t even realise they are sick themselves until their kidney function is already dangerously low. It can also impact their lives in ways you may not see so can be a hidden disease.

2. They get tired really easily and are so used to feeling that way it becomes normal for them. One of the essential functions of the kidneys is to regulate haemoglobin levels and when these are low you can become anaemic which makes you feel tired as your blood is not so good at taking oxygen round your body. This can come and go and isn’t necessarily constant so it may not always be obvious how they are feeling.

3. They get itchy. Really itchy. As waste products build up in the body they can irritate the skin and cause an itch that will not quit. The skin also gets drier and more sensitive. Antihistamines and dry skin creams can help but not always. It’s just one of the many small but significant symptoms that can impact suffers lives on a daily basis.

4. Brain fog come and goes. A combination of toxins in the blood, tiredness, stress and worry can contribute to brain fog – forgetting things and getting confused more often than normal. This can be frustrating and annoying for sufferers as others get frustrated and annoyed with them for not being on top form all the time. Patience, understanding and communication is very important.

5. Healthy superfoods can be deadly. Lots of so called health foods and superfoods are actually high in potassium which is dangerous for kidney patients. Avocados, spinach, quinoa, bananas, potatoes, chocolate, nuts and seeds… the list goes on. As discussed in This Post, kidneys play a key role in managing levels of potassium and too much of it can damage heart muscles. Keeping potassium levels low is just another daily requirement to prevent serious damage to other organs.

6. Salt. Is. EVERYWHERE. Sodium is another electrolyte that has to be carefully managed as it impacts blood pressure which in turn damages kidneys. Once you start looking for salt on food labels you realise it’s in lots of things you wouldn’t expect like biscuits and even some fizzy waters. Stock cubes and packet foods are particularly high in sodium so now we make a lot of recipes from scratch without adding salt and add in other seasonings like herbs and spices.

7. Everyone has advice for you. What food to eat, what you should and shouldn’t drink, what exercise you should do and other miracle cures they’ve heard about. Whilst the advice is well intended, and often useful for someone who does not have CKD and wants to stay healthy it’s dangerous to experiment with unknowns when there is so little margin left to play with in the remaining kidney function. A difference of one or two percent can result in having to go on dialysis at very short notice.

8. Waiting times for transplants feel like a life sentence and some people don’t make it. There are currently almost 5,000 people in the uk waiting for a kidney and the wait time for a transplant is two to three years. Currently in the UK you have to give consent for you organs to be donated after death and your family will be asked to support this also. You can help reduce wait times by joining the NHS donor register and discussing your wishes with you family.

9. You can’t let it run your life. There are days that are bad so you have to make the most of the days that are good. On those good days, others may think you are better or not really that sick but the disease hasn’t gone away and will never get better without transplant. If you know someone with CKD they (probably) still want to socialise and go out just maybe not as much as before. They will probably also be quite happy to answer questions you have as well.

10. There’s no cure, just waiting for either dialysis or transplant. It takes some adjusting but the fact is there is no alternative path. This is the life we have to live until a successful transplant – there is no plan B. So we live it. Each day, as it comes and we will be thankful for it.

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.