Archive for the ‘Health and kidney related’ Category


Hi there,

I hope every body is well. This blog is about some of the natural remedies and supplements I use to help alleviate my chronic kidney disease. 

Ever since my I was diagnosed with Chronic Kidney Disease I have always been on the look out for natural remedies and foods that can help me so I don’t have to take drugs with horrible side effects. As I have said before there is no cure for chronic kidney disease/kidney failure and so I thought I would try natural medicine as it would be away to bring the body back into harmony with itself and its surroundings and so help the body heal itself.

Therefor I decided to try some natural remedies to see if they will help. I will go through a list of some of the natural remedies/Supplements that I actually use. 

1) ALPHA LIPOIC ACID 

I take alpha lipoic acid capsules as this is an antioxidant. Because high amounts of oxidants is thought to be a cause of kidney disease then reducing the levels of oxidants in the body nay reduce the strain on the kidneys. So Alpha Lipoic acid is used as a kidney-healing nutrient. It does this by helping to increase cellular kidney energy for healing. It increases energy, reduces blood glucose levels, prevents diabetes and can be used in the treatment of cardiovascular disease and much more.  It can be found naturally in Liver, potato, broccoli, brewer’s yeast, spinach. 

2) CO-ENZYME Q10

I also take Co-enzyme Q10 tablets. This is an important vitamin-like substance required for the proper function of many organs and chemical reactions in the body. It helps provide energy to cells. It also has antioxidant activity. This enzyme helps increase cellular kidney energy for healing. Also it helps with heart disease, lowering blood pressure and increasing energy.  It can be found in chestnuts,  salmon, almonds, broccoli, sardines, hazelnuts, and mackerel

3) OMEGA 3/FISH OIL

Another supplement I take is Omega 3 capsules. Fish oil rich in omega 3 have been shown to be particularly beneficial in healing as it reduces inflammation, reduces high blood pressure and decreases cholesterol. It has been used for many kidney-related problems including kidney disease and kidney failure. It is also most often used for conditions related to the heart and blood system. It can be found in a range of oily fish.

4) VITAMIN C & VITAMIN D

I take these in multivitamins tablet form.

Vitamine C is another powerful anti oxidant. It helps reduce inflammation and boost the immune system.  It can be found naturally in wide range of vegetables and fruit.

Vitamin D is another vitamin used to boost the immune system. Because the kidneys help produce the body’s Vitamin D stores people with kidney disease sometimes have vitamin D deficiency.  It can be found in sardines, salmon and milk.

5) GARLIC & GINGER

I eat a lot of garlic and ginger. These are also Anti-oxidants.  And they boosts the immune system and helps keep the heart healthy.  Both of which also help maintain the circulatory system, regulate blood sugar levels, reduces blood pressure and decrease cholesterol.

In addition I just want to mention Curry. Not only does curry include garlic and Ginger it also contains a lot of other ingredients good for the body including Tumeric, Chili and Coriander. So I eat a lot of curry, which is good as I love curry :).

Other things that I have heard are good for the kidney include Cucumber, Astragalus, Green Tea, Nettle Tea, Lavender, Ginseng and many others. There is a lot of information on the internet on natural remedies if you look. And I did a lot of research before hand. But I will say this, just be sure to check with your doctor before taking any natural medication. Due to my anti rejection tablets I could not take Astragalus or Ginseng because of the potential for interaction between them.

There is little scientific evidence that some of these remedies work as there have not been many clinical trials done. But there are is lot of papers and information on the internet about the benefits of these natural medicines. Therefor I am not saying these magically work but I am giving them a go. They may slow down my illness and prevent me from going on dialysis. Or they may just have a placebo affect. I just don’t know. But I am willing to give anything a go to help slow down this disease and improve my quality of life.

But on a final note, I will repeat, if you do want to take natural remedies or supplements always check with your doctor first just in case they interact with any drugs that you may be taking or whether they would suit you because of your particular condition

Thanks for reading.

I also did a YouTube Video about this subject.

Natural Medicine I use in my kidney disease

P.S Please remember more than 10,000 people need and organ transplant in the UK. So donation is extremely important.

www.organdonation.nhs.uk/

 

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Hi there,

Here is another short update of coping with kidney failure. Today I want to talk about a touchy subject and that’s depression and other emotional symptoms that go along with my illness. Depression is extremely horrible to have.  And people with chronic illness also have to endure depression and other emotional problems as well as their main illness.  But some people think that depression is trivial and not a genuine health condition. They’re wrong – it is a real illness with real symptoms.

I find it very difficult to talk about but I thought I would write a blog about it.

I am sorry to admit but because of my illness I find it very difficult to cope. As a result I feel extremely depressed at times.

It is really difficult to explain how I feel. I have mood swings, paranoia, depression. Some days I feel isolated and angry, others days I feel insecure and stressed. I over analyse and over think things. I get worried very easily and have very little patience. As a result I get irritated and lose my temper quickly. My memory is bad.  I struggle to remember simple things. Sometimes I struggle to get my words out and become very frustrated. Some days I feel like I am spinning out of control. And sometimes it feels like I am being sucked into a black hole. Other times it feels like I need to cry and scream and kick and shout. Then other times I go quiet and just want to be left alone.

I feel angry, guilty and alone. I guess this is due to a number of reasons. For example that I cannot be the bread-winner of the family or the father/husband I want/use to be. And also I feel guilty and angry that the transplant did not work. I blame myself. I also think I feel this way because I was disowned and betrayed by my own brother who thought I was imagining my chronic illness and exaggerating my horrible symptoms. I don’t think I ever got over being stabbed in the back by him or understand why he did it (but that’s another story), which I guess has torn me up inside.

The symptoms seemed to have progressively got worse over the past year. For a while now I have ignored the fact that I have these emotional problems. But it has got so bad that I cannot ignore it anymore and so decided to do something about it. I have decided to seek counselling. unfortunately my transplant clinic do not offer counselling so I have had to be refered by my GP. But there is a long waiting list to be seen by a counsellor on the NHS. I was told it could take from 4 to 6 months.  So in the mean time I have decided to take advantage of the free telephone service offered by Kidney Care UK.

http://www.kidneycareuk.org

I found out about the service by accident. One day I put a posting on the kidney care Facebook site asking about counselling and somebody from Kidney Care UK mentioned that they offer a free phone counselling service. So I rang them up and started my phone counselling sessions last week.

Hopefully these sessions will help. But it has helped me a lot recognising I have depression and talking about it with some body impartial. By sharing my problems it feels as though a huge weight has been lifted from my shoulders. So I would encourage anyone who thinks that they are suffering from a mental health problem to seek out some sort of counselling.

Anyway, I think that is it for now.

Thanks for reading.

P.S Please remember more than 10,000 people need and organ transplant in the UK. So donation is extremely important.

http://www.organdonation.nhs.uk

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Hi there,

I have not done an update on my health for a while so I thought I would give you a short update.

Its been over a year and half since I have had my transplant. Unfortunately the new kidney has never worked properly.

This week I had my 3 monthly appointment with the Kidney transplant specialists at North Staffordshire hospital. My bloods results were as expected with my kidney function hovering around the 18 mark. The Doctors did not really say anything else except confirming that the donor kidney is only providing a little bit of kidney function. Although the new kidney has not worked as I expected I guess it has helped keep me off dialysis for the time being.  I have not been put back on the transplant list as the threshold to be put on the transplant list is 15% kidney function. But even though I still feel crap they cannot do anything for me. And they will not remove the kidney or reduce the anti-rejection medication.

Since my transplant I have been up and down. Some days I have been ok but most days I feel terrible. I try to do as much as I can and I try to keep my mind active. But it is getting more and difficult. I don’t know if it is the effects of all the anti-rejection medication I am on but the fatigue and tiredness seems to have worsened over the year. Most days I cannot do anything. So I take each day as it comes. If it is a good day I try to do as much as I can. If it is a bad day I do nothing.

In February I was admitted to hospital with a severe stomach bug.  I remember it was a Tuesday morning (well it was Shrove Tuesday to be exact) and I had just come down for breakfast. I was in the middle of making pancakes with poached eggs when I felt incredibly unwell. I felt extremely dizzy and light-headed. The room was spinning and the last thing I remember is thinking I needed to sit down before I collapse. Then the next thing I remember is coming round on the floor with my wife standing over me. She was on the phone to the ambulance. I told her I was fine and persuaded her not to continue with calling an ambulance. She then wanted to call the kidney unit but again I persuaded her not to.

I felt extremely unwell and had severe diarrhea but I did not want go into hospital as I thought I just had a bug and I will get over it. It took 3 days for my wife to eventually persuade me ring the kidney unit and go into hospital. I was incredibly stupid and stubborn. The hospital ran tests and determined I was severely dehydrated and that my kidney function, Potassium and Magnesium levels were dangerously low. They immediately put me on a drip. Further blood tests revealed that I had Camplyobacter (which is a common cause of food poisoning). They did not give me any antibiotics as it was just a matter of riding it out until it had all got out of my system.

After a few days (most of it spent on the toilet) and several drips I had recovered enough to go home. But this event taught me a valuable lesson. Don’t be so stubborn in the future. Listen to your body and more importantly always listen to your wife :).

I have to remember that I am not as healthy as I used to be and I cannot fight illnesses like I use to.  They are dangerous to me and I need to go to hospital if needed.

Anyway, that’s about it for now. thanks for reading.

Remember more than 10,000 people need and organ transplant in the UK. So donation is extremely important.

http://www.organdonation.nhs.uk

 

 

 

 

 

 


Hi there, I am really sorry that I haven’t posted a blog for nearly a year now. This is because it has been a really tough year as I have had a kidney transplant (more on that later) and also my health has not been good and thus I have not felt like writing anything. In addition, because of my ill-health I have also had to stop doing the kidney45challenge (See my kidney45challenge Australian adventure) which is a shame. Although I did manage to complete 35 challenges which is an amazing achievement in itself. I might do something similar in the future, health permitting, I don’t know.

Anyway, as I was saying I had a kidney transplant in January 2016.  I was diagnosed with stage 5 kidney failure in 2013 and placed on the transplant list in December 2014 (See Kidney failure, what it all means and my journey so far).

On the 31st January 2016 I was at home with my wife and we had just finished a Chinese take away when my mobile rang. I looked at it and wondered who on earth could be ringing at 11 o’clock at night. The number was withheld so I ignored it and let it ring off. 10 seconds later my wife’s mobile rang.  At that moment I sort of suspected that it was the transplant unit in Manchester. She answered it and yes it was the call. A kidney had been found and we had to get to Manchester Royal Infirmary (MRI) as fast as we possibly can.

I was shocked. I really did not want to go as I was shit scared. But my lovely wife said don’t worry it will be ok so we put project kidney into motion. Well to be honest we didn’t really have a plan. Anyway I packed some overnight stuff. We woke up Oscar and dropped him off at the in-laws and made our way to Manchester. It was so unreal as we drove in the dark towards Manchester. Everything seamed to be in slow motion.

We finally arrived at the Manchester Royal Infirmary hospital at around midnight and I was booked onto ward 9.  As I sat in bed waiting for the nurse to do all the pre-transplant checks I was petrified. Which showed as my blood pressure and heard rate were sky-high. My wife and the nurse kept saying you need to calm down so we can get your heart rate down. Well that’s easily said than done. I had a chest X-ray done and blood test done in preparation for the operation. My lovely wife stayed with me till about 5 in the morning whilst I was waiting to be taken down to theatre. As nothing seamed to be happening I told her to go home so she could get some sleep.

I tried to sleep myself but it was useless. I just sat in bed wondering and worrying about the day ahead. I was not even allowed any food or drink because of the upcoming operation. Eventually after hours of waiting, at around 9am, I was taken down to surgery on the trolley. I remember speaking to the transplant surgeon about something, And then talking to the anaesthetist who told me to count back from 10. I started counting and then I remember nothing. The next thing I remember is being woken up by one of the surgeons and the transplant had been done. I was in a lot of pain and very groggy from the operation. I was taken back to ward 9 and I asked the nurses to contact my wife to let her know I was ok. I don’t really remember much else except being in a lot of pain.

I was in hospital for about 3 weeks. I don’t really remember much in hospital, its all a bit of a daze. Unfortunately the transplant did not work as expected. The new kidney did not wake up. I was told by various doctors it may take up to 3 months to wake up. I hated being in hospital. It was so depressing. Plus it was very hard on my family who had to travel an hour each way to see me. We live in Crewe and the hospital is in Manchester. They tried to see me every day at first but it was too much for them, so in the end they reluctantly reduced it to 2 or 3 times a week. I was so looking forward to going home and getting away from hospital food.  Even though I had stabilised from the operation the new kidney still had not woken up, but the doctors agreed that I could be let out :). I was so happy when I was told I could finally go home.

But after leaving the hospital I still had to go back 2 or 3 times a week for regular blood tests for the first couple of months. I was pretty ill when I got first home as, on top of the new kidney not working properly, I was in a lot of pain from the operation and unwell because of the side effects from all the drugs I was taking. The doctors kept saying the new kidney will wake up eventually.  The doctors tried even me on steroids and different doses of anti-rejection drug but they did not work.  I have had loads of blood tests and scans done and there were no indications of infection or rejection.  But then they did eventually find out what was wrong when they did a biopsy of the kidney. The biopsy showed that new kidney had vascular disease. So the reason why the transplant hadn’t worked was that the donor kidney was diseased. This was very upsetting and frustrating news for me. I could not believe I had received a diseased kidney.

kidney-op-pic

Picture of me after operation

kidney-scar

My Kidney Scar

 

 

 

 

 

 

 

 

 

When I left hospital I was on so many different drugs I lost count. Here is a picture of some of the drugs I was on.

img_20161014_100856

My Selection of Drugs


 

 

 

 

 

 

Unfortunately around 3% of transplanted kidneys from deceased donors just do not work for one reason or another. I guess it’s just the luck of draw me receiving a diseased kidney from a donor. Which is why there is a much better chance of the kidney working from a live donor, as the donor has to have numerous tests themselves. So any problems with a potential donor kidney will be picked up.  

Although I have more or less recovered from the operation I now have contend with the continued side effects of the concoction of anti rejection drugs I am taking. Mood swings, depression, extreme nausea and tremors being the worse of them (which I wouldn’t have minded if the new kidney actually worked). And on top of that I have now have anemia, magnesium deficiency, potassium deficiency and am on the verge of being diabetic. Fortunately I was pre-dialysis before the transplant as my kidney function ranged from 12 to 15%, and now it is the same. The transplant made no difference to my kidney function at all, except that I feel worse now than I did before the transplant.

The doctors have more or resigned to the fact that the transplant hasn’t worked and now gradually reducing my anti-rejection medication with a view to putting me back on the transplant list.  They will probably leave the new kidney in unless it becomes medically necessary to remove it.  Some people have 2 or 3 transplants before they find one that works.

I have now been transferred from the MRI to North Staffordshire hospital to be cared under them. I have a check up every couple of weeks now. And they are in the process of reactivating me onto the transplant list. I must admit the care and organisation at North Staffordshire is a lot better than it was in Manchester. The nurses and doctors at North Staffordshire Transplant Unit have been brilliant. I have to say I was very disappointed with the after care at the MRI.

So as you can imagine it has been a terrible 9 months. with endless trips to one hospital or another. And then the stress and anguish of finding out that I received a diseased kidney.  I have tried to remain positive but it has been very hard for me. And my lovely wife Simone Derbyshire and son have been brilliant in their support of me. And I am sure it has been hard for them as well watching me go through this. There is a small part of me keeping my fingers crossed that the new kidney may heal itself and wake up eventually but I have accepted that it will never work.

I have felt so down and depressed now because the new kidney didn’t work. And even though I am going back on the transplant list soon I am in two minds whether I want another transplant from a deceased donor. I don’t think I want another year like that and I have had enough of being prodded and poked by doctors.

But on a final important note. Even though the transplant hasn’t worked, I am very thankful for the donor and their family. As without donors, and their decision to use their organs after their death, life saving transplants can never take place. More than 10,000 people need an organ transplant in the UK.  So donation is extremely important. And even though I have had problems, most people can have transplants which are very successful and have improved their lives enormously.

http://www.organdonation.nhs.uk

I cannot think of anything else to say at the moment so thanks for reading this, and have a nice day. Hopefully it wont take me another year to write my next blog :).


I know I don’t look Sick but…… I have a chronic illness.

I bet when most people hear the phrase “chronic illness,” it likely conjures up images of an old granny in a nursing home.

The thing is, chronic illness isn’t limited to just the elderly. Chronic Disease is defined as “a long-lasting condition that can be controlled but not cured,” and includes things like arthritis, kidney disease, depression, lupus, multiple sclerosis, diabetes, inflammatory bowel diseases and many more. Many of these illnesses are also invisible, meaning that you can’t tell someone has one unless they explicitly tell you so.

As you know I have stage 5 Chronic kidney disease (also known as end stage kidney failure) and am waiting for a kidney transplant. With Chronic kidney disease there is a progressive loss in renal function over a period of months or years until the kidneys do not work any more (and you die). Chronic kidney disease is common, affecting over 3 million people in the UK. However, it can go undetected as people often have no symptoms until stage 4 or 5.   I probably had it many years before I was diagnosed.  I only went to the Doctors because my lovely wife persuaded me as I was getting more and more tired all the time and feeling generally unwell.

Kidneys are essential to our health. They get rid of excess water and toxins, regulate blood pressure and make red blood cells. They filter your blood up to 30 times a day. They help keep your bones strong and healthy by activating vitamin D. And they are responsible for keeping the components of your blood in balance.

Every year over 55,000 people in the UK are being treated for end stage kidney failure.  Around 6,000 people are waiting for a kidney and less than 3,000 transplants are carried out each year with one person dying every day in the UK waiting for a kidney.  As I have mentioned before there is no magic cure, there are just different ways of living/coping with it.

The symptoms can vary wildly from person to person.

For me.  I feel exhausted all the time. It is really hard to describe how tired and exhausted I feel. But its like living with an intense deep exhaustion that makes every movement feel like I am walking at the bottom of the ocean with a huge ten ton weight on top of me. And it doesn’t matter if I have had 3 or 10 hours of sleep I feel the same.

When the weather is cold I suffer from cold intolerance and find it very difficult to keep myself warm. My legs often become week and feel like jelly. My bones ache all over. I often feel nausea and have headaches. My skin itches often. The simplest tasks take me 5 times longer and take 5 times as much more energy than a “normal” person.

I have little patience and suffer from mood swings, paranoia and intense depression. In turn I suffer really badly from stress.  I feel insecure and I get stressed and worried really easily. And if I do get stressed or worried about anything my body rebels and my other symptoms flare up even worse.

I find it very difficult to concentrate on anything and as a result my memory suffers drastically. And so I get confused and frustrated very easily. My mind feels very fuzzy and foggy. People with Chronic Kidney Disease usually call this having a “foggy brain”.

I can be ok for three hours one moment and curled up in my bed nauseated, dizzy and weak for the next six hours. I can be on the go for 1 or 2 days and lying in a bed the week after. My body rebels without warning.

As you may know I am trying to something positive and I am attempting 45 challenges in order to raise awareness for organ donation and to raise money for the British Kidney Patient Association (See http://www.kidney45challenge.com). And as you can imagine this is not easy for me to do. Because of the reasons above I find it incredibly difficult.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire. I don’t have that luxury. I read a blog recently which explains what I mean, it’s called the spoon theory. It’s a simple analogy to explain what it’s like to live with a chronic illness or disability.

The basic premise is that when you have a chronic illness or disability, you wake up each day with a certain number of spoons. Every time you exert effort — by getting out of bed, making tea, showering, eating, all those little things — you lose a spoon. When you run out of spoons, that’s it, the day’s done and you can’t physically do any more.  Lets say I start each day with 10 spoons. Then you can understand that very quickly I can run out of spoons and not be able to do anything else as I am spent. It’s an analogy that demonstrates the loss of control someone experiences when they’re living with a chronic condition. Read the full explanation in the blog below.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Another way of explaining it is each day is like the day you had the worst hangover of your life. After you’ve gotten over the initial sickness and killer headache, you’ve had some breakfast and feel a bit better. However for the rest of the day, you feel not quite right, all fuzzy and sleepy and not very with it. Now imagine having that every day from when you wake up to when you go to sleep, and that’s as good as your days get.

I hate it. I hate being ill all the time. It is really hard being tired and ill all the time and this gets me down. Especially when I can’t play with 7 year old son because I am too tired. It breaks my heart every time I say no I can’t play with him. My wife and son do try their best to be supportive but it can’t be easy for them either watching me go through this.

People with Chronic kidney disease usually have to take a concoction of drugs to help our body cope with the various conditions that we suffer from because the kidneys can not maintain the blood chemistry.  I am no different, I take numerous medications because I also have Hypokalaemia, impaired glucose tolerance, Hypocitraturia, Secondary Hyperparathyroidism and Dyslipidemia. And on top of the different medications I have to take there is the endless blood tests, other tests and hospital visits that I have to endure to remain active on the Transplant List.

On top of this is the hassle of having deal with others who do not believe you are ill. Dealing with somebody who does not believe your are ill is not something that anyone should have to deal with on top of the stress of their illness. So how should you deal with somebody that doesn’t believe that you are sick.  Here are some ways that I have come across to deal with these people in your life that question your illness.

1. Think of yourself.

This is a simple tip. Think of yourself. When you cancel or don’t do much as you use to, do so with the utmost love for yourself and with self-care. Lose the guilt and especially lose the worry of what others will think when you can not or are unable to do things because of your illness. Set expectations for yourself, and other people, that are realistic. Be upfront with your friends and family that because your health is unpredictable, you typically may not be able to do some activities.

2. Be confident in talking about your illness.

When someone says, “You don’t even look sick,” you should respond kindly: “Thank you, but I am and it’s a daily challenge. If you want to learn more about my health condition, please just ask’.” Don’t waste valuable time and effort convincing them otherwise. And don’t waste energy defending or justifying yourself.

3. Don’t Waste energy Getting Mad

Before getting mad at those that question you, ask yourself if you have thoroughly explained what you’re going through. If people continue to question you, then it is best to distance yourself or remove them from your life.

4. Surround yourself with positive people.

Instead, surrounding yourself with positive people who will help you cope with your illness. Joining a support group is also going to aid in buoying you.

Unfortunately I have been the recipient of this attitude from my brother. He claimed that I was exaggerating my condition and being melodramatic when I told him about my illness and he said  “you will be ok as your condition isn’t life threatening as you can get dialysis to make you better”.  He said a lot of other hurtful things to me which I wont go into here. He will never comprehend what I (and my family) have to go through or understand how hurt he made me feel. He just did not know how hard it is for somebody, both physically and emotionally, to live with a chronic illness. I tried to explain my situation to the best of my ability and that dialysis was not a cure but he refused to listen. He just didn’t know what all the fuss was about. Instead he took advantage of my weakened/confused state and left me depressed, frustrated, sad and even guilty that I had this condition. I did not even get any support from him for me attempting the kidney45challenge and he even used that against me to attack me further. But I didn’t want his pity I just wanted respect and his understanding of my circumstances. So I have now removed him from my life as you just don’t expect that sort of betrayal from a family member. But maybe one day if he has the maturity and humility to apologise to me I may let him back into my life, I don’t know. Anyway, I wont say any more on the matter, it’s not worth the stress.

My life is better and more positive without an ignorant negative judgmental poison influencing and upsetting me. I just do not need the added stress of dealing with a selfish individual who refuses to believe that I suffer from a chronic illness and refuses to listen to me.  Unfortunately, I am not alone as people with chronic illness have had to face the same as me. And as a result they lose friends and family because of this. It’s very sad reading about the various stories on social media. There are number of cases where family members have turned their back on the person with chronic kidney disease because they say that their disease is an embarrassment to the family. Another example was a partner of 15 years who walked out saying he did not want to live with an invalid. And there is the problem of friends backing off because of fear of being called upon to help the ill person. And so as a result it can be very lonely adjusting to life living with a chronic illness.

But the behaviour of strangers can be just as bad. Although this has not happened to me, yet! I have heard of people with chronic conditions parking in a disabled spot (because quite rightly they have a blue badge) having to put up with evil stares, verbal abuse and arguments by other persons because they don’t think anything is wrong with them. For example there was a case where a kidney patient was at the hospital seeing his kidney specialist when an old lady asked them why a fit man like him was parking in a space for people with a serious illness and she said she bet he was the sort who parked in disabled bays!! Another example is of a mother with a child with a chronic condition having an argument with an elderly person because they were disputing the fact that she had parked in a disabled spot in a supermarket car park.

I could go on and on with different examples as it very common. Especially from the elderly who think that it is only their “right” to have blue badge and be able to park in a disabled space. You would have thought that some people should know better but again some people judge people by what they see. In this instance there is not a lot you can do except smile, calmly explain you have a chronic condition (using step 1 above) and continue on your way. Having an argument is more hassle than its worth.

Doctors, nurses and health professionals can be just as bad due to their ignorance of chronic conditions. Some just do not understand the ramifications of chronic illnesses. And there is the indignity of facing bureaucratic medical professionals when trying to get financial assistance from the government. The hurdles that people with chronic conditions have to go through when trying to get PIP (Personal Independence Payment) or ESA (Employment and Support Allowance) is mind-boggling and soul-destroying. I have heard of sufferers with chronic conditions being turned down because the medical professionals who have examined them have found them ‘fit for work’ as they have ignored everything the patient has told them because they look healthy.

It’s really hard living with an invisible illness because you often don’t look sick and it is hard describing what you are going through. That’s why chronic illnesses are often referred to as an invisible illness. I hear it all the time when people say to me  “but you don’t look sick” or “you look really well” but little do they realise how I am feeling inside.

The other day I was speaking to somebody whose husband had the same condition as me and he was on dialysis. He was in a “worse condition” than me and she said that even though her husband was extremely sick he still looked well on the outside. And this is common amongst people with chronic illness. You just don’t what is going on beneath the surface.

And since many chronic diseases don’t have a cure this is something that person has to live with forever. So if you meet some body with a chronic illness. Please don’t be ignorant and call your friend or family member a hypochondriac or, worse, imply that they’re imagining or making up their symptoms for attention. And if you see somebody park in a disabled spot but they don’t look disabled, don’t judge them and please don’t assume that some one is ok just because they don’t look ill. Their illness is a very real thing. As I said before we don’t want pity, we just want respect and understanding of our circumstances.

And for those that have been the recipient of this attitude, don’t blame yourself. It’s actually their ignorance and their problem not yours. Think positive and follow my tips. As some people will never understand.

This blog was written to complete challenge 18 from kidney45challenge. Challenge 18 was to write a blog about my condition and share it online with as many people as possible. So please share it if you can.

Thank you for reading and have a nice day :).


Hi folks.

I hope you are all well and had a good Christmas and new year.  This is a follow-up to a previous blog that I wrote last year (Kidney failure, what it all means and my journey so far). Well a lot has happened in the last year since I was diagnosed with kidney failure and so I thought I would write another blog about it. 

Where shall I start? Well at the moment my kidney function is stable at around 15%.  I last saw my kidney specialist in December before Christmas and he was happy with my progress. I still have high cholesterol, hypokalaemia (potassium deficiency) and secondary hyperparathyroidism (Vitamin D deficiency). And so I have to take loads of medication, which can very frustrating sometimes.

Also last month in December I was finally added to the kidney transplant list at the Manchester Royal Infirmary and am now waiting for a kidney transplant, which is good news. Its only taken about a year and loads of tests to get on the list :). Fortunately I am not on dialysis yet. They normally only put people on dialysis when their kidney function deteriorates below 10%.  

I am still on long-term sick leave from work. I have busy been managing the symptoms of my illness. Extreme fatigue, nausea, muscle weakness, tiredness, headaches and a foggy brain/confusion are still some of my symptoms.  But I have a couple of new symptoms now. One, I feel the cold more now. I get so cold easily and cannot get myself warm. It is so unbearable sometimes. And second, I get incredible itching all over my body. Managing all these symptoms is hard. I have good days and bad days and so I am still just taking each day as it comes. I have seen a phrase on “Facebook” that has helped me cope. It goes like this… “On bad days when I am sure I can’t go on I like to remind myself that my track record of getting through bad days so far is 100% and that is pretty good”.

As I said before most of my family and friends have been fully supportive of me. Especially my wife Simone and son Oscar who have been my rock. However my brother and his wife think I am exaggerating my condition and am being melodramatic.  As a result he wont be donating his kidney to me now as he does not believe the seriousness of my illness and thinks I am making it all up.

Anyway on a more positive note, because I will be 45 this year I wanted to do something  positive and not just sit on my arse and await the inevitable. So an idea came to me…

This year I am going attempt 45 challenges during the next year or so to raise awareness for kidney disease and organ transplantation. In addition I am going to raise money for the British Kidney Patient Association who do wonderful work for those affected by kidney disease. In fact they help pay for me and my family to go on holiday to Mexico last year. In October we all went on a lovely holiday to Mexico. I wanted to go somewhere nice with my family before my health deteriorated further. This was partly paid for by the British Kidney Patient Association. And without their help we wouldn’t have been able to afford it.

Anyway, back to the challenges. Challenge 1 was to not to shave for 1 month. I am now on day 13 and my beard is really itchy and I look very unkempt.

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Challenge 2, which I have already completed, was to stay in bed all day (except for toilet breaks). It was really tough. I was so bored as I like to be up and about. I have never stayed in bed before even when I have been really ill. This challenge made me realise how lucky I am that even though I have kidney disease and associated health problems that it could be worse. It makes me realise how difficult it is for somebody that is bedridden. And it’s made me appreciate my life more.

I have a new lease of life now because I am focussing on these challenges. At the moment I have about 36 challenge ideas and am so looking for about 10 more to do. I wont list them here, but if you want to know more, then please go to my kidney45challenge website. And if you have any other ideas then please let me know.

To prevent my kidneys getting worse I have completely changed my diet now. Whether this will have any affect I don’t know, but I guess there is no harm in trying. So I no longer eat processed food. I very rarely eat sweet or sugary foods. I eat a lot more vegetables, fish and fruit and have now started steaming food.  I have reduced the amount of salt I add to food. And I very rarely eat meat now. In fact when I do eat meat I feel a lot worse afterwards. I try to exercise when I can, especially walking. But I pace myself. You try to learn what your own body can handle. And so now I listen to my body a lot more than I use to.  If it hurts then I stop! If I feel ill then I rest & recover! If I feel well I get out there & enjoy long walks!

I do try to eat & live a normal healthy lifestyle. I am determined not to let kidney disease defeat me and will continue to battle on. But I worry about Oscar, my son. I know he has been affected by my illness. I know it frustrates him that I am not able to play with him as much as I use to. I know he doesn’t like seeing his daddy unwell. And I know it affects my wife as well. It can’t be easy on them watching me suffer. But all we can do is think positive and be their for each other.

Oh and we have moved house.

Can’t think of any thing else for the moment so I will leave it there for now.

Thanks for reading and good-bye for now.

Live long and prosper :).


Hi every one.

Its been a while since I have posted a blog. This is because I have been ill and have been too tired to write anything.  And as I have been tired all the time I have not really felt like blogging anything up to now.

As many of you may know I am suffering from stage 5 kidney failure (see previous blog).  I have a GFR of around 14%. at the moment. 

I know some people will be asking what stage 5 kidney failure means and what the GFR means so I will try to explain the classifications of chronic kidney disease.

Kidney function is assessed by Glomerular Filtration Rate (GFR) and Chronic kidney disease is classified in 5 stages.

Stage 1 – Normal kidney function, GFR   > 90 %.

Stage 2 – mild kidney impairment, GFR 60 – 89%

Stage 3 – moderate kidney impairment, GFR 30 – 59%

stage 4 – severe kidney impairment, GFR 15 – 29%

stage 5 – establishes renal failure, GFR < 15% (requires dialysis or kidney transplant)

Specific symptoms usually develop only in severe renal failure, and include anorexia, nausea, vomiting, fatigue, weakness, confusion, depression, eczema, lethargy, swelling of tissues, Shortness of breath, insomnia, muscle cramps, heart disease, increased urination and headaches.

The last 6 months or so haven’t been easy. I have had to go on to long-term sick from work in June which I didn’t like but had to for my sake and for work’s sake.  As due to the ongoing nature of my illness and fatigue/memory problems it causes I was finding it increasingly difficult to perform my duties to the same level I use to. This was very stressful as I was worried about letting people down and so unfortunately I went on long term sick.

Extreme fatigue, nausea, muscle weakness, tiredness, headaches and a foggy brain/confusion are some of my symptoms. I have good days and bad days and so I am just taking each day as it comes.

But I have say the worst symptom is being tired all the time.  I just hate it being tired and not being able to do things with my 7-year-old son. It just breaks my heart when I say “No, sorry I can’t do that I am too tired”.  I get up, I am tired. I go to bed, I am tired. I walk, I am tired. I watch TV, I am tired. It’s just constant fatigue and tiredness. And then to add to this I can’t make decisions easily because of my “foggy” brain.  It is very frustrating.  But to top it off there is then the depression that goes along with it. And I must admit I am angry and scared. I am not scared of dying as every body has to die at some time, I am scared of being incapacitated and not being there for my son when he grows up.

Each day is a battle against depression, fatigue and confusion and I have to admit its really hard….. But some days I do feel fine and I do have a little bit of energy. It just a matter of making the most of those good days. I don’t know how long I have left till me kidneys fail completely, it could be months or years, the doctors just don’t know. So, as I said before, now I just take each day as it comes. I realise that I will have bad days but then make the most of the good days when they come along.

At the moment I am just waiting to go on the transplant list.  I have had numerous tests so far to see if I am eligible.  I have had an ECG, chest X-ray, dopplar scan, ultrascan, echocardiogram and numerous other tests and blood tests. And that is also what is frustrating and depressing, the amount of hospital appointments and tests I have had to endure.  And then there is the waiting for the results, I hate it.

On the whole most of my family and friends have been fully supportive of me. However I think one or two people probably think I am exaggerating my condition or being melodramatic. But what do I say to somebody who thinks that I being melodramatic or exaggerating my condition? I haven’t got the energy or time to convince them otherwise.  If they do think this, they are obviously very judgemental and cynical. And judge me on the image they can see. I look healthy so I must be healthy!!!!

And to be honest I do look well at the moment. But just because I look well and don’t have a great big lump on my nose or something physical that stands out, it doesn’t mean I am healthy. As bottom line inside I am dying. And that’s what’s happened to me, I have death sentence. I am slowly dying. And then when my kidneys fail completely I will die unless I am kept “alive” on life support called “dialysis”.

However, there is a common misconception that if somebody is on dialysis that, oh he is OK, he’s on dialysis. Well surprise surprise, not actually. dialysis is a way of keeping a patient alive, a form of life support and it does not fully replace the functionality of your own kidneys. Although it keeps you alive it still leaves you at the mercy of many and varied complications brought about because dialysis just cannot do the same job as a kidney, leaving poisons in your blood, which can result in may deadly problems including increased risk of heart attack, calcified arteries and other unpleasant side effects.

And if am lucky enough to receive a new kidney there are problems associated with that too.  Firstly the problem of rejection and then there is concoction of immunosuppressant drugs that you have to take for the rest life. Which in turn lowers your immune system and puts you at risk of numerous infections. Then there is the increased risk of cancer from taking all these drugs.  So even with a new kidney there is a whole set of other problems to deal with. Although these problems may affect some people more than others. And some people may have no problems after a transplant.

I guess what I am trying to say is that I do not think am being melodramatic or exaggerating my condition. Chronic kidney disease is a killer.  There is no magic cure, there is just different ways of living/coping with it.

I am not even sure if I want dialysis or a transplant at the moment when the time comes….. part of me just wants nature to take its course when my kidneys fail completely but that’s another story.

However, I feel extremely positive for the future as I know there are people who love and care about me and that’s what counts. Especially Simone (my wife), Oscar (my son), my work colleagues and networking friends who have been brilliant. I don’t think it has been easy on Simone and Oscar who have been my rock though this.  I have had some lovely messages from family/freinds on “facebook” and emails of support from friends. With one friend saying  you are “one of the good guys” and it bloody well should not be happening to you.  My work has been very supportive in allowing me to take time off.  And as I am on long term sick leave now I am able to spend more time with my family. And also I don’t have to worry about the stress of work.

I am not going to give up just yet. I am keeping positive for the future, not only for my sake but for Oscar’s sake.

This blog has been very hard for me to write but I must admit I feel a lot better in doing so. its taken me about a week to write and I hope people who read this will get a better understanding of my condition and how I feel. I will try to write more blogs and go back to writing film reviews.

Thanks for reading and good-bye for now.

Live long and prosper :).