Tag Archives: Kidney

This year is going to be a good year

First of all, HAPPY NEW YEAR GUYS!!! As if it is 2015 already! Last year has gone so fast, it’s kind of unnerving…

I celebrated New Year on 31st Dec 2014/1st Jan 2015 like most other people in the UK but I was having quite a rough time… I had been suffering with a lot of muscle weakness over the past few weeks which had got progressively worse to the point that the energy I needed to get out of bed, or even to stand up was so massive that I pretty much spent a lot of my day lying down and not moving out of my room. I was also having quite big problems with fatigue which contributed to me not getting very much done each day. I didn’t really know what was going on since I haven’t really experienced muscle weakness as one of the symptoms of my autoimmune disease before, but I did know that muscle weakness and fatigue are both symptoms of loads autoimmune diseases and considering my diagnosis is possibly one of four it was quite possible that the muscle weakness was a symptom of mine. I had all these thoughts going through my head… “This would be the 4th symptoms I have to fit the lupus criteria… maybe it is lupus?” “Is it the plaquenil?! Am I having a reaction?” and things like that… And then my Dad came down with a stomach bug, and then my brother, then my uncle and it went all through the family and then hit me…. I am thankful to say that I am over my stomach bug after loosing 6 pounds over the course of a week and a half, and I have more energy… And no more muscle weakness… Which suggests that it was this bug that was causing my symptoms in the first place. It is so difficult to identify exactly what is causing your symptoms when your body could be causing every symptom! Because of this stomach bug, my 2015 didn’t start off well so I decided that my new 2015 would start from the 3rd and I would leave my stomach bug, and muscle weakness back in 2014. So far it has worked well!

From the 1st I started doing my physio exercises which are essentially stretches that we hope will make me more flexible, or at the very least will mean that my muscle tightness won’t play such a significant role in the loss of movement I have at my joints. 7 days on and all I have noticed is that my muscles are sore… but physio is something that takes time and I am more than willing to work on it.

I also got my appointment through for my podiatry appointment which will be on the 18th February. I am hoping that the podiatrist will be able to work out whether my achilles tendonitis is inflammatory or mechanical and based on that will be able to treat me accordingly… I was checked for new insoles in the summer, and got 2 pairs then and since my feet haven’t grown I don’t see why I would need a new pair but it could be that my insoles just aren’t doing the trick, in which case it would be an easy fix. On the other hand it could be inflammatory and steroid injections might be needed, and if my Rheumy feels that my tendons are affected enough, a change of meds may be in order but we shall come to that bridge if that is the situation.

I next see my Rheumatologist in the middle of March and so far there isn’t an awful lot to report on the Plaquenil front. 7 weeks on and there hasn’t been all that much change… I have found that the ligaments in my left knee, especially my Medial Cruciate Ligament, have been swelling which makes my knee look way weird but my actual knee itself hasn’t been swelling as much as it was before. Don’t get me wrong, it still swells often, but I have been finding that if I do the some of the stuff that used to make it swell, it isn’t swelling as much. I wish the same could be said about my right ankle… it is just being a pain in the backside! It swells when it wants, it gets warm to touch, it wakes me up at night, I find it difficult comfortable, but then other times it doesn’t feel too bad. I just don’t understand it. Now I have been diagnosed with Raynaud’s I am reluctant to use ice treatments on my extremities so it is difficult to know what to do about it but I have found that if  raise it and support it well at night it isn’t as bad. This is definitely going to be a talking point at my next appointment, along with my ligament and tendon issues.

One thing that I forgot to mention to my Rheumy last time I saw her was that I STILL have costochondritis that is still quite painful despite high doses of Naproxen and Paracetamol. This has been going on for years now and I have accepted that it is one of those things that I am going to have to live with but I would prefer my Rheumy to know just in case it means something to her… The reason it took so long for me to be officially diagnosed with Raynaud’s was because I didn’t mention my feet getting really cold because I had just got used to it, and it was only when my Rheumy actually questioned me on it and then gave me all these guidelines about picking up cold things did I realise how serious it could be. I’m also going to ask whether my kidney function has been checked, not because I feel there is a problem but because I know that lupus and NSAIDs can mess with kidneys and since I only have one, I am not taking any risks when it comes to that. I haven’t had my kidney checked since I was a kid so I would rather be cautious and know everything is fine than worry that I could have missed something.

I am feeling quite good about 2015, I am no longer searching for a diagnosis and treatment. I feel that I am in more control of my health because I have a health care system that is now working with me, rather than not working at all. Even though my condition is not actually under control yet, I still feel good mentally because I feel that my doctor and I are on the same page and we are finally getting somewhere. This year is going to be a good year.

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University, Flutiform and World Kidney Day!

I have just received some really exciting news. I got a conditional offer from the University of Bradford to study Physiotherapy. I didn’t really think the interview had gone that well, but I kept my mind open and tried not to think about it too much and I got an offer! I can’t actually explain how happy I am, and even if I don’t go to uni this year, I know I still got an offer.

I still have to wait to hear back from the other 3 universities I applied for before I can make a decision about which university I would most like to go too, and which uni would be my back up choice if I didn’t get my insurance choice.

The offer really brightened my day up! Especially since I have been struggling with my lungs so much today. I have a pretty bad cold which kept me up most of the night with the coughing, and I woke up wheezing quite a few times too which I am not so happy about. But I am so thankful that I am actually on Flutiform because I would hate to see what my lungs would have been like if I was still on Symbicort. In chemistry we did an experiment which involved burning matches and that just sent my lungs into overdrive… My lungs were already having issues and after the experiment my lungs absolutely hated me. If you put my hand on my chest, you could actually feel it rattling (more than it usually does) and I think I might have given one of my friends a bit of a shock when she felt my breathing (Sorry about that!). Surprisingly though my peak flow isn’t as bad as I expected it to be, although that is a pleasant surprise.

Although I absolutely love Flutiform, I am struggling with the fact that I can’t increase the dosage when I am feeling rough, like I used to with Symbicort so I am kind of stuck with Ventolin. I had taken a lot of Ventolin today and I was still wheezing which is quite disconcerting when you are in class, and you can’t concentrate on the lesson because you are trying to concentrate on breathing right. Thankfully, my lungs have eased up this evening but they are still pretty tight and I’m still coughing up a storm but I haven’t wheezed since about 3 so I am happy.

I have a pharmacist phoning me on Friday to see how I am getting on with Flutiform so I am going to ask him if you are allowed to increase Flutiform when you are having issues, although I suspect that he will tell me to phone my GP.

Okay so another exciting day is happening this week… IT’S WORLD KIDNEY DAY ON THURSDAY!!!

The World Kidney Day logo is looking pretty cool isn't it?
The World Kidney Day logo is looking pretty cool isn’t it?

So I have fished out my Kidney Research UK T-Shirt to wear on Thursday to raise some awareness… Why don’t you wear something purple on Thursday to support World Kidney Day?

Kidney, UTI and antibiotics

[WARNING THIS IS GOING TO BE A TMI POST]

For those of you who read my blog regularly, you’ll remember a couple of weeks back when I was struggling to shake a temperature and was feeling generally wiped out. And later, when I mentioned that I had back pain the mini freak out my family had since we do believe that I had some sort if kidney infection/UTI. And eventually my body sorted it’s self out and I got over the temperature and the back pain went away. I was practically back to new except from the complete lack of energy I had. (Read about that post here)

Well yesterday I woke up feeling pretty tired, as per usual. I figured that it was because I had been to a university open day the day previous which, had really wiped me out. Everything was dandy until I went to the loo, which caused immense pain when I urinated (told you this was a TMI post). The pain was so bad I couldn’t actually stand up straight for 2 hours after I had been to the toilet.

On Sunday mornings I have work, where I teach kids to swim but I was in so much pain, I couldn’t actually go.

Normally I wouldn’t tell my parents if I am sore because I am constantly sore and there isn’t much point telling them all the time, but yesterday was quite different. To start with I didn’t think that there was anything too serious wrong, I thought it would just pass but it didn’t and I was still in a fair amount of pain by the evening. I also had a bit of a temperature going on, which was hanging around 99.6-99.1F with ibuprofen and paracetamol on board.

The pain was sharp, starting half way down my torso and continued down (I’m not going to say anything else) but that wasn’t the only pain I had. The right lower quadrant of my abdomen was also really painful which had me thinking that this may not be just a straight forward UTI (urinary tract infection) but maybe it was the start of appendicitis… Why was this happening on a Sunday of all days?!

I went straight away to tell mum and we decided to head off to the out of hours (OOH) clinic, not just because we suspected a UTI (not good when all of my other UTIs turned into kidney infections and I only have one kidney) but also because we wanted to get my screened for appendicitis.

When we got to the OOH clinic it was around 7.30pm. They make you write all your details down on a form and pee in a cup (if you suspect a UTI or kidney infection). We only had to wait 40 minutes to be seen, pretty remarkable since there was a 5 hour wait at A&E and everyone was being sent to this OOH clinic.

So when I got called in I was still feeling pretty rough, I still had a temperature of about 99.3F and still had major pain in my abdomen. The nurse was really lovely and did a super quick urine analysis and an examination. Turns out that most of my pain is over my appendix but I do have a UTI according to my urine analysis. She also checked my pulse which was hanging around 110bpm at resting and she checked my oxygen saturation too as a precaution. To be honest I don’t think the pulseox machine was totally accurate with my heart rate because according to that, my heart rate was fluctuating between 124bpm and 90bpm, but it did feel like my heart was going at around 110bpm.

The nurse advised me to go straight to A&E if I get any more signs of appendicitis (a bit scary) and explained that because I only have one kidney, and because my heart rate is quite high and I have a temperature she is going to prescribe double the dose of antibiotics that she would normally do for an extra 2 days so now I’m on a week of double dose antibiotics for a week. But as my friend GG says, I’d much rather deal with the side effects of double dose antibiotics than an infection… Too true!

Unfortunately since I didn’t get out of the clinic until 8.30pm there were no pharmacies open near me so I had to wait till this morning to get the antibiotics. So I have come to college since I am not infectious and walked down to town to get my antibiotics, and I treated myself to a Starbucks too!

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Who would want anything more than a Starbucks and antibiotics?!

The “joys” of only having one kidney

If you read my 12 of 12 yesterday… You will know that I have had a bit of a temperature going on…

I still have this temperature going on and it’s still sitting around 99.4-99.5F which isn’t too bad. It would be classed as a low grade fever.

My friends have been urging me to go to the doctors but I just figured I had a virus because otherwise I don’t feel too badly.

I have, however, had a sore back since Friday which is unusual for me because my back doesn’t normally join in with my other joints and I’ve just been putting it down to not being in the best of health which was making my body a bit more sore than normal.

But today my back has been slightly more sore than the other days so I mentioned it to mum and she went a tiny bit mental with me because back pain and a low grade fever are signs of a kidney infection. Oops…. I just figured because I am so used to joint pain that this was nothing special and of course because I told mum on a Friday evening we can’t see a doctor till Monday. This blasted joint pain is actually messing with everything… I mean how can I completely miss signs of a kidney infection?!

I’m really annoyed at myself for ignoring this back pain, I mean I’m normally really good at noticing signs especially when it comes to my kidney. I mean only having one kidney just keeps me on my toes whenever I have any back pain but I guess with feeling off, I just missed it.

I am still secretly hoping that I don’t have a kidney infection and that it’s just a coincidence me having back pain and a bit of a temperature. I guess if I still have a temperature on Monday, I will find out for sure.

My first blood donation session

I have been wanting to donate blood for ages, way before I actually could. The age requirement in the UK is 17, which I am but I have been wanting to donate blood since I was about 10… My parents would tell me things about what blood could be used for and it really amazed me… Surgeries, trauma, chronic illnesses and the list goes on and on. I have always wanted to be a part of that, to help someone who really needs it, not because it would make me feel good but because people actually need blood and it comes with the added perk of making me feel good.

I finally got to donate my first pint of blood today after months (I was 17 in June) of being turned away because donor sessions were full, so when I got this chance there was no way I was going to say no.

So I have been excited all week for today but literally right before I went in, I did feel quite nervous, as soon as I got talking to the nurses though everything was all good.

First you have to go in for a sort of medical interview thing where they ask you questions about your health based in a questionnaire that you have filled out. Apparently I am quite a “complex case” since it took a senior nurse and a district nurse (not sure what the difference is but they seemed to know) to figure out if I was allowed to donate. Basically the fact that I see a rheumatologist completely threw them but since I have been seeing her since I was 14ish and still had no diagnosis because if lack of evidence seemed to be okay, but they did say that if I was diagnosed with any type of auto-immune rheumatic condition in the future, I would not be able to donate which I am quite upset about really.

My having only one kidney completely floored them too. It seemed like I was the first patient that had come a long knowing that I only have one kidney… They weren’t entirely sure if that would mean that I couldn’t donate so they spent 10 minutes looking at some sort of database and came to the conclusion that I could donate since I don’t see a nephrologist. (I was going to point out that having only one kidney is pretty common and not everyone who donates blood with one kidney would know, but I didn’t need to say anything).

So after they decide you can donate they use a little finger pricker to take some blood (from your finger, amazingly) and then they put this little drop of blood into a test tube full of a green/blue liquid (I didn’t have the presence of mind to ask the name of this liquid though) and if your blood sinks within 15 seconds you are good to donate. It’s basically a little test to see if you are anaemic or not. I thought that the finger pricker would hurt more than it did, but it hurt less than a paper cut and you can hardly see the mark it left.

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And then after they prick your finger to keep your finger clean and to stop you spreading any little drops of your blood around which would be totally unhygienic they stick a massively oversized plaster on your finger that gets in the way more than doing anything.

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After they have decided whether you can donate or not, they make you take a seat in a little waiting area for a chair to become available, and while you are waiting you are forced to drink a pint of water. That doesn’t sound to bad but after you have drank a litre of liquid in the last half hour you really do need to go to the toilet!

I got a chair pretty quickly, within 10 minutes of sitting down in the waiting room… So then the nurse and I had a wee chat about which arm was best to use… I don’t know why, but she really wanted to use my right arm but after I had told her that a phlebotomist couldn’t even get a needle into my right arm she gave in and went for the nice “juicy vein” in my left arm (her words, not mine). It would have been easier and quicker if she had just gone for the left arm straight away instead of looking for a vein in my right but she was the nurse and knew best.

What I was really glad about was how she got my “juicy” vein first time so there were no extra sticks for me. The nurse also said that I was brace watching the needle going in since most people don’t watch that on their first donation, but I watching the needle going in or not watching it, either way you are donating blood.

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The needle was a big needle, I must say but the bigger the needle the faster you bleed so you aren’t sat there for so long. And plus it really didn’t hurt at all when it was going in, nothing more than a blood test.

It took me a grand total of 12 minutes to bleed out the whole 470ml which I thought was quite reasonable… The nurse seemed quite talkative so I asked her what the fastest donation she had seen was… It turned out to be 3 minutes which does kind of put my 12 minutes to shame. But knowing the fastest time made me want to know the slowest time but it turned out the machines used nowadays automatically shut off if you haven’t reached 470ml by 15 minutes, so the longest she had seen was 15 minutes.

I think taking the needle out was the most painful part of the whole donation, and it didn’t even hurt that badly, again the equivalent of a blood test. They like you to apply “3-fingered pressure” for 3 minutes which I interpreted as firm pressure using 3 fingers, and then they stick a plaster on and a roll of cotton wool to apply extra pressure to the site where the needle was.

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After half an hour you are allowed to remove the cotton wool roll but you have to keep the plaster on for 6 hours!!!

I was not going to wait up till 12pm to take off a plaster so I took it off after 4 hours and I’m really impressed by how little the bruise looks, I’m sure tomorrow it will look a bit bigger and a bit browner but so far so good.

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Although blood donation is really important, the volunteers who help out are just as, if not more important! Without them the who process would fall to pieces, and in the future, if I’m not allowed to donate I will one of those volunteers because I would still want to do my part!

World kidney day 2013 – 14th March

I promised this post almost a week ago but for various reasons including flares and college work I haven’t been able to do this post till today.

So what is world kidney day you may be asking? Well it basically is what it says… It is a day to raise awareness about kidney conditions. So last Thursday I wore my kidney research UK T-shirt in support of world kidney day. Like many illnesses, Kidney conditions have a particular awareness colour which is purple (FYI Lupus awareness is also purple).

It still isn’t very clear why I am supporting kidney research UK other than the fact that it is an awareness day for chronic conditions, but Kidney Awareness is important to me because I was born with one Kidney. Now from the outside I don’t look any different and I guess the only reason a person would know that I only have one kidney would be if I told them but that still doesn’t change the fact that I’m a kidney down.

I was born with a condition called Multi-cystic Dysplastic Kidney which effectively means that one of my kidneys stopped working when I was in the womb and so my body focused all it’s attention on my other kidney. So in the absence of my left kidney I have quite a large right kidney which does the work for two kidneys (brilliant right). Well it turns out that by having one larger kidney isn’t so good after all, because even though I am normal and my kidney function is good, having one larger kidney means that I have a greater risk for acute kidney injury. Basically this means that if I take part in contact sports such as football (soccer), horse riding, rugby, hockey and any other contact sports I have a greater risk for kidney injury because my kidney is larger.

Now I am really lucky that my condition only affected one kidney… If it affected two I wouldn’t be hear today because missing two kidneys when your born is pretty much incompatible with life.

Having one kidney doesn’t really affect me too much… I just have to be careful that if I do get a kidney infection or symptoms of a Kidney infection that I have to go to the doctor ASAP. And I also have to take care during sport because even though it’s quite hard to get a kidney injury I really wouldn’t like to be careless and end up damaging my only kidney.

So that was a quick summary of why World Kidney Day is more than an awareness day to me. 🙂