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.

Quick, quick, slow…

Another day in the life of a living donor:

08:30 logged on to work laptop to check through some emails.  Luckily my employer has been very understanding about the tests that both I and C are having done and has allowed me to be very flexible in my work patterns.

09:15 Drop the cat at the vets for a tooth extraction – we all have appointments today. See you later Murphy!

11:00 Arrive at Epsom hospital for C’s appointment with his renal specialist who is pleased that his latest blood results show his kidney function is holding at an eGFR of 15 for now.  He also confirms that C will be referred to the surgeons for assessment too as part of the transplant process. Back home for a bit more work

13:00 Lunch at a lovely little pub half way between where we live and St Heliers.  It’s become a tradition that we stop by for some food on our way too or from the hospital. I often imagine the celebratory lunch we will have here one day when we get good news.

14:00 On our way to the hospital. I get a call to say they need to move my CT Scan appointment for tomorrow to this evening – great news, we can get it all done in one day.

14:40 I arrive at the renal clinic and check in.  I go to have my blood pressure checked and mange to introduce myself to the nurse as “Doctor Sadie”…. She looks confused and I don’t really blame her. I manage to clear things up and take a seat.  The waiting room is full and it’s clear that kidney disease in all its forms does not discriminate.  There is diversity here in so many ways but I know I’m probably the only donor here.  The rest are people that at some point will need dialysis and/or transplant.  So many lives could benefit if more people were on the NHS donor register and took the time to discuss it with their families.

15:20 In with the doctor who takes the time to go over my results so far; explain once again the donation process; its risks, benefits and considerations. He takes a medical history and completes a quick physical examination which picks up a soft heart murmur.  It’s something he thinks is not going to be an issue, but worth checking out so I’m booked in for a echo-cardiogram to make sure.  This will be the final test before my referral.

16:00 Over to the CT unit for my scan.  They are having problems with one of the scanners so its a bit hectic.  I gown up and one of the radiographers puts the biggest cannual I have ever seen into my arm.  We know it’s gone in OK as it happily sprays blood out whilst she tries to get the cap on.  The cannual will be used for the contrast die that is injected as part of the CT scan to show up my kidney structure in glorious detail.

16:30 I initially wait a while for the scan as they are busy and then suddenly I’m in, on the scanner bed and being briefed about the procedure.  I’m told I will feel warm when the die goes in; that I will get a metallic taste in my mouth and “It will feel like I’ve wet myself” Excuse me? Yes, it will feel like you are having a wee, but you’re not. Don’t Panic. Right….

The scan starts and whilst not scary, it is a little unsettling in its unusualness.  The scanner bed moves back and forth inside a spinning ring; a laser guide is used to line it up on the right part of your body and a robotic voice instructions you to “breath normally/breath in deep/hold your breath” in succession.  Then the die goes in via the cannula and yes you feel warm, yes there is a metallic taste in your mouth and YES – it does feel like you have had a wee. All this happens at once so you just need to lie there, breath as instructed and keep still – its all normal and all over very quickly.

17:00 Back to the vets to pick up  a sleepy cat who is minus two teeth but otherwise intact.

C and I both log back on to our laptops and finish up some work before logging off and gathering on the sofa to relax and reflex.  So much happened in just one day to move us forward but for now we are back to the waiting game.  With a holiday looming along with the July matching run deadline there is much for us to think about whilst we wait.

The Eternal Waiting Room

Apparently time is a constant.  It moves at the same pace no matter where you are or what you are doing.  I think this is a lie: It moves quicker on holiday, Sunday evenings and when you are drinking a glass of wine (or maybe that’s just the wine that moves quicker…) and it moves slower on Monday’s; when watching a kettle boil and waiting for test results and appointments.

My results from my day of testing did come back and I got the all clear to move to the next stage (hurrah!) which includes a chat with a kidney specialist (to talk through the procedure and the risks etc) and a CT Angiogram to look at the structure of my Kidneys and make sure they have all the right bits in the right places.

But whilst waiting for those results, and then the waiting for the next set of test I feel in a state of limbo.  Like I’m in one giant waiting room, just… waiting.  I can’t sit and relax at home – I either need to be doing something or trying to get to sleep to just make the next day come quicker.  At work, I’m going through the motions but none of it seems important or relevant.  I think of events and dates as either “Before I have X appointment” or “After X appointment”.  I am marvelling at people who can remain focused on other things as every waking moment I am fixated on the donation process.

Each result feels like a lock unpicked on the next door to another waiting room, and what worries me most is that at some point after all the tests are done there will be nothing left but to wait.  Wait for the next matching run; wait for the phone call to say we have been matched/not matched… rinse and repeat until we find the keys for that next waiting room door that will lead to an operating room and all that lays beyond it.

I’m a advocate of mindfulness and meditation so I know that living in the past or future is neither practical or productive as only the present is real.  That is why I am keeping up with journaling, meditating and writing short stories as in those moments I am not a potential donor waiting to get on a list, I am just being me.

Testing, Testing….

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Last week I had my second round of tests to check my suitability as a kidney donor.  The first round had been some simple blood tests and a chat with the transplant nurse back when I put myself forward to check my blood and tissue types, but this next round really stepped things up.  Here’s how my day went:

08:00. Arrived at the Medical Investigation Unit (MIU) at St Heliers.  I was weighed; my height measured and blood pressure checked and an initial blood sample taken before the main part of the test commenced. This involved an “contrast agent” called Iohexol being administered via a cannula.  I have fortunately never needed to have a cannula before so today was the today I discovered the veins in my arm are shy so mine was fitted to the back of my hand. It wasn’t in for long as first the Iohexol was administered and then the line flushed through.  After a short wait back in the waiting room to make sure there was no adverse reaction, I was free to go for the rest of my tests.

09:30. Over to the renal unit to see the Counselor.  This was a one to one chat so she could understand my reasons for wanting to donate; make sure I felt supported and that at any time I could change my mind and that was OK.  The main purpose of the chat is to make sure the donor is not being coerced or paid to donate and I think I made it clear I was doing this for all the right reasons. (not money!)

10:20. I headed over the the ECG clinic.  There was quite a queue here and as time ticked by I knew I would not be back in time to the MIU for my next timed blood test.  A quick word with the receptionist and she assured me it was fine to head on over to my other appointment and then come back when I was ready.

10:50. Back in MIU, a second cannula fitted to my other arm.  Once again, shy veins in my arm meant I had to have it in the back of my hand.  I really felt this one go in, but once in and taped down I got used to it.  Two lots of blood taken and I was done.

11:00. Out of MIU and over to Ultrasound.  A quick squidge of cold gel, some prodding around my tummy with the ultrasound probe and I am declared “Normal”.  This is good news on many levels, the main one being it means I have two kidneys – one for me and one spare, hurrah!

11:30. Across the hall from Ultrasound was the X-Ray dept where I went next for a chest x-ray.  Another nice quick and simple procedure with minimal waiting.  The trickiest part was getting the gown on and off – you’d think they would have come up with something better than all those little ties by now?!

11:45. Back over to MIU for my next timed blood test.  The cannula works well and the two vials of blood are taken in no time.  One more test left…

11:50. Back in ECG and this time no queue and I’m seen very quickly.  Some sensors are attached to my skin and the test begins. On the screen I can see my heart beating away and after a few minutes it’s all done.  The test looks “normal” but will need full analysis along with all my other results.  I found it amusing that as advanced as the machine was, it sill produced a paper output that I had to walk over to the Renal Unit on the other side of the hospital, but it helped kill some time.

12:40. Back in the MIU for the final blood sample to be taken to complete the five hour Iohexol test that will be the true indicator of my suitability.

Kidney function is measured as GFR and normal for a female adult is between 120 and 90 with 99 being average.  If mine is below 90, then they will not allow me to donate.  Hopefully, this will be another test where I will be “normal”… time will tell.

And that was the end of the day.  I fully expected to have lots of time waiting around, getting lost, being told I was in the wrong place/wrong time, but it all went like clock work.  I cannot praise the NHS staff enough. I felt well looked after and valued – it really is a world class service when working well.

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.