Tuesday, 15 July 2014

London Bridge Walk and Kidney Failure Symptoms

13th July saw Mum, Tom and myself attend the London Bridge Walk for Kidney Research UK.

A turn out of over 1000 people - the warm up

Mum getting ready

The kidneys are designed to filter waste and toxins from your body. When they start to fail, this job isn't done properly and you start to feel the build up as a dull ache/itch.
Standing still for too long can set my legs off. Walking a lot without much sitting down can set my legs off. I tend not to realise they're in a dodgy state until I stop moving completely as the walking can actually act as a form of morphine, stretching the leg so I don't feel the ache.

Now I like to walk. During the tube strikes several years back, Tom and I would travel to Paddington then walk all the way to Euston. We did this for a week, passing parks, in the sunshine. It was great (til the last day decided to throw plumes of pollen in my face and my eyes suffered for it)!
But this walk pushed my limits and I was really feeling it by the end! I was originally going to be part of the cheering team. Why did I swap? Well, given the fact that I've recently been suffering from depression, I wanted to 1) feel like I was actively doing something to make a difference 2) support mum who was raising the money 3) get some exercise.

It was totally worth it, raising over £650 for Kidney Research UK! Again, I cannot state enough thank you's for those of you who contributed.

There were over 1000 people doing the route shown below:

I think we were over the 3rd bridge when it started to really rain. That's when we saw people with ponchos and wondered how we'd missed those!
That and the crush of the London Eye crowd were the two things I didn't enjoy very much. I'm not a huge crowd person (unless it's all for the same thing eg like before we began the walk), so I was left feeling a little uncomfortable during that.
Oh yeah and the clown....I don't like clowns. And this one squeaked. Fortunately, he wasn't too close to us, but the walk became quicker when I saw him. I really don't like clowns and this one didn't look too friendly!!

However the whole walk itself was extremely rewarding and just as mum and I were started to lose it, we saw the end.

Here's a sample of photos taken throughout the day. The middle one marked when it started to pelt it down and we had to take shelter. Tom was with us for the first hour, then had to head back home as there were duties calling him and we hadn't realised how long this would take, but I love him for having come along in the first place to show his support.

The two photos in the collection above, in the bottom corners are as we started to approach the finish line. I kept thinking 'If I stop, I'll never start again' and here mum, bless her, told me to turn around so she could get a photo. That look on my face is amused despair as I wanted a photo but also really just wanted to get to the end!

We got medals for our efforts....then I fell onto the grass and refused to move. After a few moments, mum convinced me to stand up to have the photo taken.
Getting home was a breeze and I was met by Tom at the station. As I got in the car, I gave him a blank stare which I think spoke volumes of how I'd forgotten to brain.
I plonked on the sofa, then had to fight the compulsive need to get up and keep walking! My legs and brain were so wired from the walk, I had to exert effort to stop myself getting back up so I could rest.
I woke up half an hour later with no recollection of having fallen asleep in the first place.

The next day, I couldn't feel my legs. When I could, it was unpleasant. But again...totally worth it and now I want to do more!!

Some medical facts:

Now in the light of my having done the walk yesterday, I did some quick research into kidney failure and came across the following facts which may help readers understand the symptoms better. Bear in mind, Kidney Failure is known as the silent killer because you generally don't get really obvious symptoms until it's too late. The symptoms creep up on you so slowly, it's easy to mistake them for 'just part of who you are'.
The only reason I was 'caught in time'...ish (pre-dialysis) was because I kept describing my day to my friends and in the end, they emotionally blackmailed me into going to see the doctor with 'that's not normal!'

Note: these are the different symptoms...not their order because I don't have swelling or rash...yet.
Also - some of these are a tad graphic, depending on what you classify as 'too much information'

Symptom 1: Changes in Urination - 
Kidneys make urine, so when kidneys start to fail, urine may change.
  • You might have to get up in the night to urinate. 
  • It may be foamy or bubbly
  • You may have to urinate more or less often 
  • it may contain blood
  • You may have difficulty urinating
Now the last one hit home for me. Before I started taking blood pressure medication, I actually had physical difficulty in passing urine. To me, the bladder is like a water balloon: when it's full of liquid, you squeeze it and liquid comes out with no difficulty. I was actually having to create pressure to get decent results. When I started taking medication, the difference was actually shocking.
And I thought the foam was just from my having applied pressure. Nope.
Also, urine should be as clear as possible...it's basically just a liquid passing through you, coming out the other end. If you get a small sample and look at it in the light, if it's got bits in it...that's protein...and shouldn't be there.

Symptom 2: Swelling - 
Failing kidneys don't remove the extra fluid they need to so these build up in the body and cause swelling in legs, ankles, feet and/or hands.

Symptom 3: Fatigue - 
Healthy kidneys make a hormone called erythorpoietin which tells your body to make oxygen carrying red blood cells. As they fail, they make less of this. This is anaemia and means your muscles and brain become tired very quickly. This now means that stairs/steady slopes are a challenge.
I'm currently on EPO injections to combat my anaemia. A while back, something went haywire with my order and I wasn't unable to take them for 2 weeks which meant I did an unintentional detox of the medication and cleared it from my system. I felt abysmal after the first week and a half and it made me really appreciate the EPO after that.

Symptom 4: Skin Rash / Itching - 
Kidneys remove wastes from the blood stream. When they fail, the waste builds up and can cause severe itching. This is another symptom I don't think I have. I itch...yes...but I don't know what's normal to others.
What I do notice is there are times I struggle to get comfortable. If a person's sat next to me and they notice me move a lot or generally fidget, it's because I'm horribly aware of my skin and trying to getting comfortable. It's almost as if I can feel the hair on my skin being misdirected.

Symptom 5: Metallic Taste in Mouth / Ammonia Breath - 
A build-up of waste in the blood (called uremia) can make food taste different and cause bad breath. You also notice you eat meat less or lose weight as you just don't feel like eating.
I've still got a very good appetite, but it's literally just occurred to me that this symptom does in fact happen to me as once in a while, I'll randomly get a very strange taste in my mouth that is more noticeable when I exhale through my nose. Like an after taste.
Once a month, I'll also get a bad breath normally associated to feeling fluish and unwell or even a stomach bug. Despite feeling fine.
It's why I take extra good care of my teeth and carry gum around. My way of combating bad breathe.

Symptom 6: Nausea and Vomiting - 
A severe build up of waste in the blood (uremia) can also cause nausea and vomiting. Loss of appetite can lead to weight loss etc.
This hits worse once a month. 2 weeks or so before hand....when everything starts prepping, it's like my entire body conspires against me. Like normal, but with more elements thrown in as everything else wants to join in. I feel nauseas and uncomfortably sensitive, like my skin is more alive than before.

Symptom 7: Shortness of Breath -
Trouble catching your breathe can be related to the kidneys in two ways: First extra fluid in the body can build up in the lungs. Second, anaemia can leave your body oxygen starved and short of breath.
A couple of years back, I used to be able to run for the bus, or around a field during a game with no difficulty. Now....not so much. It's extraordinary the difference a few years has made.

Symptom 8: Feeling Cold - 
Anaemia can make you feel cold all the time, even in a warm room. Given I also have bad circulation and Raynauld's (a massive loss of circulation in my finger tips which turns them blue), the kidney failure doesn't help.

Symptom 9: Dizziness and Trouble Concentrating - 
Anaemia related to kidney failure means that your brain is not getting enough oxygen. This can lead to memory problems and trouble with concentration and dizziness. Yup, yup and yup. Especially annoying when you're on stage.
This is another reason I suffer anxiety. Forgetting means my level of organisation plummets, I can forget important things or get distracted at the worse moments. I then live in fear of upsetting people.
I've had conversations with people where I'll ask them a question, then zone out before I've finished the sentence only to zone back in 2 seconds later realising I haven't heard the response. That's why I use music.
If I hear the music when the person's talking to me, I realise I've zoned out and tune back in quicker than without.
It's here I'd like to add how much I appreciate the patience my friends have with me.

Symptom 10: Leg/Flank Pain - 
Some people with kidney problems may have pain in the back or side related to the affected kidney.
When I stand for long periods of time, my back threatens to go. Which is why I sit on the floor if the opportunity arises, or sway. Side to side swaying can help the tension in my legs and give my back the illusion of movement. I occasionally find lying on the sofa with my legs up in what others may classify an awkward position helps. Sometimes it gets so bad, Tom has to massage the muscles around my thighs and calves.

If these sounds familiar for yourself or anyone you know, go to your doctor. Even if it's not kidney failure, it's worth trying to catch it before it gets worth. Yes, I need a transplant, but it could have been a lot lot worse for me.
It's a lot harder being on dialysis than it is preparing for a transplant.

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