Archive for the ‘Health and kidney related’ Category


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.

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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.

Snapshot_20150111_2

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 :).


Its been a while since I have posted a blog.  This is because I have been very  busy with work, hospital and doctors appointments and a 3 week holiday in Florida. I have not really wanted to or felt like blogging anything.

Back in November 2013 I went to the doctors as I wasn’t feeling well. I had some blood tests and it was’nt good news. Well to cut a long story short I was approaching renal failure. To put it simply, if you take a healthy person’s kidneys as 100% efficient then mine were < 20% efficient. The doctor said that maybe in about 3 years I may require kidney dialysis or a kidney transplant. The doctor said it may be sooner or later he doesn’t know.
So over the past couple of months I have had a series of blood tests, urine tests and scans. On the 21st March I had an appointment with kidney specialist. And basically the tests confirm that my kidneys are bad and that I am in stage 4 kidney failure. I will be needing a kidney transplant or dialysis soon. And because my kidneys are not working properly I now have to take vitamin D and Potassium supplements. In addition I have had to have the Hepatitis B immunisation. The doctor wasn’t sure how long I have before my kidneys failed completely.
Anyway, before I can get a kidney transplant I need to have loads more tests to insure I am fit enough to receive a new kidney (ie that I have no other problems like heart problems).  And then I will be put on the transplant list.  My brother has kindly offered 1 of his kidneys and so at that stage if he still wants to give me a kidney he will also have to have some tests to ensure he are fit enough to donate a kidney followed by an interview to ensure he knows what he is doing. And then if we are both fit enough they have to ensure we are match and then eventually we will have the op.
On Thursday I have the first of many tests to check how fit I am.  I must admit I feel a bit scared about the prospect of my kidneys failing and having to have dialysis or a transplant.Anyway, in the meantime we had a great holiday in Florida. We were over there for 3 weeks and we didn’t want to come back home.  We have put a load of pics on facebook if anybody fancies a look. We stayed in a hotel for the first week and then we had 2 weeks in a villa. The weather was  brilliant and we did loads of stuff, walked a lot, ate a lot. The highlights was universal studios and the world of harry potter which was cool. Oscar had a fantastic time and bought a harry potter wand. And then on my birthday we went to a medieval banquet/jousting show which was brilliant.  We ate out at loads of restaurants.  The villa we stayed in was fantastic. I have got a postcard for you which I didn’t manage to send to you as I forgot to take your address with me, so I will send that soon as well. The sunshine really did me good and when I was in America I felt great but now being back in England I feel low already.

Anyway, that’s about it really. Hopefully I will  blog more often now. And I will keep you updated of my medical progress.