As many of you out there will know, Lupus or more specifically SLE and Lupus Nephritis are more than capable of causing kidney damage, sometimes with dire consequences. So to mark world kidney day I am going to share some of my thoughts, experiences and tips for all things Lupus and the kidneys.
Starting with my issues with mine.......
Oh my continually swollen ankle, how I do love you dearly.....if only you could go down a little so I could wear heels again.......
This is a statement I make over and over again. Possibly, looking back, this swollen ankle was the first symptom of my battle with Lupus but it is hard to differentiate sometimes. As I have said before, I just thought this was swelling from an injury....I mean I have always done A LOT of swimming and this would not be a worrying outcome. The problem is it just didn't go down and along with the ankle I was also so bloated that sometimes I looked like I was pregnant. It was the summer and I was on holiday, with the biggest ankle I have ever seen.
(yep can't wear these anymore....not sure I ever could walk in them though)
After three months of struggling with the bloating and swelling I finally went to my GP. That is where the journey from believing I had M.E and that turning into hospitals, fear and the fight that I am living with now.
So what does this have to do with my kidneys? Well the swelling in my ankle and stomach was down to one kidney not functioning normally due to having been under attack for so long. I was retaining water and that was equally putting pressure on my already agonizing joints.
For me, hearing that my kidney was under immense stress was a lot worse than hearing about the other issues...skin, joint damage, photo sensitivity, hair loss etc. This was the one that actually involved something that could potentially cause me serious complications....I just thought I was bloated....this was so unfair. Now, I am monitored closely for inflammation of the kidneys, kidney disease and other renal problems such as recurrent UTI's (Urinary Tract Infections). However, in general I know the signs now that something is wrong. I know the different types of swelling to look out for, like joint swelling and water retention. I also know when a kidney infection is coming so I can act on it fast and quell it. This doesn't change the fact that at some point I may end up in a serious situation with this, but for now I prefer not to think about it.
What are the facts?
Firstly it's important to note that lupus can affect the whole renal system which includes the bladder, so any issues with Lupus Nephritis (specific inflammation of the kidneys), could also experience bladder problems. How lupus attacks the kidneys, is almost exactly the same as how it attacks everything else - it causes inflammation that, in the case of the kidneys, can lead to their inability to process waste products and causing blood clots.
I am sat writing this feeling the twinges of kidney pain....you will become very familiar with this unfortunately. Ok so the reality is, that over time the swelling (edema) can lead to permanent scarring of the kidneys, damage that will need to be monitored closely.
As a general rule, Lupus Nephritis shows up within the first 5 years of diagnosis - how true this is I do not know, but it fits my pattern. Out of 100 patients with SLE, around 40% will develop kidney function problems. The majority of which begin with swollen feet, ankles, stomachs and hands, leading to cloudy urine, pain when urinating and sometimes blood in the urine - I know this is all rather unpleasant...but it is important! The majority of kidney inflammations will be picked up through laboratory tests on urine samples and blood tests.
What I do to help my kidneys along....
Well to start with, I take all the medications.....any that will stop the progression of the disease is good for me. However there are some lifestyle changes that I have made that have really helped.....or I think they have for me.
This is probably the hardest one to do.....I have pretty much cut out regular alcohol......now I am not going to cut it out completely as I enjoy a whisky or wine. Cutting it down to once every couple of weeks has been a great help though and I noticed the difference within a few days. I was never a heavy drinker, but I did drink too much at weekends and often enjoyed an after work tipple. The problem is that it puts extra stress on my already distressed kidneys, so I simply stopped.
The funny thing for me, is that now when I drink I can feel my kidneys the day after....almost like they are saying "Why Cass, why do this to us?" So I would suggest limiting your alcohol to times of celebration or once in a while.
Drinking water with lemon in it. I don't know if there is any scientific reason why water and lemon works for me, but if I have a UTI coming it is the best way I have found to stave it off. It is especially good for first thing in the morning, instead of a coffee I will have this to promote the healthy workings of my kidneys rather than shock them with coffee. When I am not coming down with a UTI, I will often drink this throughout the day just to keep my water intake up....but I will go back to my coffee too.
Finally, when I am in the midst of kidney pain, or I am having a flare up, I chose ice packs or hot water bottles.....and lots of them. I prefer to use these over more painkillers as I am already pushing my system, plus a hot water bottle is cosy. Gentle walking in between the twinges of pain is also really helpful for me. it feels good to stretch out my back where the pain radiates and the fresh air is always uplifting.
