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 :).
Blog of Darren Derbyshire 