Kidney failure, Challenges and my Continued Battle against illness….

Posted: January 13, 2015 in Health and kidney related
Tags: , ,

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 :).

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Comments
  1. Have you had your B12 and folate checked recently? Brain fog and confusion are notorious symptoms of B12 deficiency. I mentioned folate because whenever I’m running low I itch everywhere. Particularly on my shins, arms and neck. Drives me crazy!

    Keep up the good work Darren, sounds like you’re taking a positive stance and making the necessary changes to your lifestyle. I know it’s not easy.

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

  3. Jayne says:

    Hi I was diagnosed with CKD in 2009 & am now at 12%. I changed my diet straight away and monitor my own blood pressure. I know that diet and and keeping hydrated are vital.i have a restricted diet but feel better for it. If i deviate, my kidneys complain and i deginitely feel it! I also have regular access to a NHS renal dietician.I am sure that watching closely how much potassium, phosphorus and protein I eat along with my own research, occasional acupuncture and herbal drops prescribed just for me, have all helped my kidneys last longer by slowing the deterioration. I haven’t eaten processed food for years and i am now starting to learn about mindfulness to relax. I think you’re to be congratulated for your kidney45challenge idea which will help you stay positive. I wish you all the very best. Onward and upward as they say!

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