Posts Tagged ‘organ donation’


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 :).


Sorry this update is a bit late. October and November was a good month of challenges. As you maybe aware  the family and I went on holiday to Western Australia with the mother in law and father in law (who kindly paid for the holiday).  I want to thank them for treating us to the holiday, as we would not have been able to afford it ourselves. Anyway, we arrived in Australia on the 15th October and stayed for about a month. First we stayed in a hotel in Perth for a couple of days and then we shared a villa in a place called Minderie.  Minderie is a small harbour on the coast about 22 miles north of Perth. We had an amazing time and I attempted a few challenges whilst I was away.

They were as follows:-

27. Eat Crocodile and Kangaroo

I did this challenge instead of a bush tucker challenge as I found it difficult find a place that offered bush tucker. So in the end I went to a restaurant that did kangaroo and crocodile instead. I tried kangaroo kebabs, Crocodile kebabs and crocodile ribs. I must admit they were very nice indeed.

28. Climb the leaning tower of Gingin (222 steps high)

We took a trip to a place called the gravity discovery centre near Gingin.  The centre was amazing. It had an interactive science museum, a cosmology gallery which had art from different background depicting science and the stars and the leaning tower of Gingin. Which is tower than leans at 15 degrees and consisted of 222 steps. I climbed the leaning tower  and standing at 45 metres high it was a huge challenge getting to the top. But I did it.

29. Eat jelly fish and century eggs (Chinese delicacy)

One evening we visited a Chinese restaurant in Perth . I had a Chinese delicacy called jelly fish and century eggs, which is basically pickled jelly fish with fermented rotten eggs. It was an acquired taste and I was almost sick. But I ate it and completed the challenge.

30. 10km Bush Walk

We took a trip to the John Forrest national park which is a huge national park near Perth. And I did a 10 km Bush walk around the park. I went along an old railway trail and saw waterfalls and very pretty landscape. It was very very very hard work as it was very hot (above 30C). It was so hard that there was a point that I did not think I would make it back to the car. But I did. I was very exhausted and hot at the end of it.

31. Take a picture of a whale whilst whale watching.

One day we went whale watching from Hillary’s harbour. The boat set off from Hillary’s harbour at about 9 am and we cruised between Rottnest island and Fremantle looking for whales. We were out for about 4 hours and we saw plenty of whales but it was very difficult trying to take a picture of them with my phone.

32. Get a selfie with a Kangaroo

We saw plenty of Kangaroos whilst we were away. We saw a few when we visited Yanchep National Park. It was very difficult getting close to them to get a salfie but I managed a quick picture in the end.

33. Play the didgeridoo

Whilst we were at Yanchep National Park we went to an aboriginal talk experience where we learnt loads about their culture and way of life. And whilst I was there I attempted the didgeridoo. Although it did sound like a damp fart :).

The biggest challenge though was…. 34)  Spending a month with my in-laws. Yes, I spent a month in the same villa with my mother in law and although their was the odd disagreement I survived, just :).

However, I think I did way too much whilst I was away as I have not been that well since we arrived back in the uk. Which is why its taken me so long to write this blog. And so as a result I will only be attempting 1 challenge in December and that’s to write a poem about my condition 45 words in length. As I have about 10 challenges left I will be continuing my challenges into next year.

As you know I am doing 45 challenges to raise awareness for kidney disease, organ donation  and raise money for the British Kidney Patient Association (BKPA). So far I have raised about £350. So come on every body, please sponsor me,

http://www.justgiving.com/kidney45challenge/

By the way, if you are not on the organ donation register, sign up below. Organ Donation Save Lives

www.organdonation.nhs.uk/


Sorry this challenge update is a bit late, but I have been taking a break from doing challenges.

Anyway in September I am afraid I only completed 1 challenge which was very tiring. I did a 5 mile walk and as a result I was not very well for a couple of days and so I decided to have a break from doing any challenges for a bit. As a result I have not done any challenges since beginning of September.

I am going on holiday to Australia soon with my in-laws who have kindly paid for it.  I hope to attempt some challenges whilst I am away but spending time with my in-laws could be considered a challenge in itself :).

So while I am away I plan to attempt the following challenges:-

27. Write a poem about my condition 45 words in length

28. Bush tucker challenge

29. Have a selfie taken with some kangaroos 

30. Get an upgrade on the flight

As you know I am doing 45 challenges to raise awareness for kidney disease, organ donation  and raise money for the British Kidney Patient Association (BKPA). So far I have raised about £350. So come on every body, please sponsor me,

http://www.justgiving.com/kidney45challenge/

By the way, if you are not on the organ donation register, sign up below. Organ Donation Save Lives

www.organdonation.nhs.uk/


Sorry this challenge update is a bit late, but I have not been all that well for the past couple of days.

Anyway, August was a busy month of challenges.

At the beginning of the month I completed Challenge 20 (Dress up as a clown) and Challenge 21 (Run a tombola stall at a charity event). We were at the Big day out in Nantwich and raised £70 on the tombola for the British Kidney Patient Association.

Then I completed Challenge 22, mow the lawn naked. Here are the pictures which have been censored so as not to offend anyone.

And over the bank holiday weekend I  completed 3 challenges. They were challenge 23 (3 mile walk), Challenge 24 (wear pants on outside of trousers) and Challenge 25 (ice bath challenge).

And here is the video for the ice bath challenge.

For September I have a couple of challenges planned.

They are a 5 mile walk, hold a tarantula and  a snake.  I was wondering if any one knew of any body that has a snake or tarantula that I could use for my challenges. If you do, please let me know.

As you know I am doing 45 challenges to raise awareness for kidney disease, organ donation  and raise money for the British Kidney Patient Association (BKPA). So far I have raised about £300. Some come on every body, please sponsor me,

http://www.justgiving.com/kidney45challenge/

Catch you next time :).

By the way, if you are not on the organ donation register, sign up below. Organ Donation Save Lives

www.organdonation.nhs.uk/


Sorry this challenge update is a bit late, its been a busy couple of days.

Anyway in July I am afraid I only completed 1 challenge due to health reasons and the bad weather. So the other challenges have been postponed to later in the year.

But I have completed challenge 19, wear a badly fitted toupee for 3 days. I looked really silly but my lovely wife Simone Derbyshire really hate it. Here are the pictures :).

In August I plan to attempt the following challenges:-

20. Dress up as a clown

21. Run a tombola stall at a charity event

22. Mow the lawn naked.

23. Malkins Bank Circular Walk (6 miles).

24. Wear Pants on outside of trousers for a day

25. Ice bath challenge

As you know I am doing 45 challenges to raise awareness for kidney disease, organ donation  and raise money for the British Kidney Patient Association (BKPA). So far I have raised about £330. So come on every body, please sponsor me,

http://www.justgiving.com/kidney45challenge/

By the way, if you are not on the organ donation register, sign up below. Organ Donation Save Lives

www.organdonation.nhs.uk/


June was a busy month of challenges.

I combined challenge 15, dress up as a women for the day, and challenge 17, the brereten heath 1 mile walk .  It was a fun day dressing up as women but rather embarrassing walking around brereten heath in my dress. I even took a trip to visit the in-laws who thought I looked really good. But by the end of the day I was sure glad to take off the bra. I don’t know how you ladies manage :).

Challenge 18 was to write a blog about my condition and share it with as many people as possible. Read the blog here. I shared it on social media and it had a lot of readers.

My last challenge for the month was challenge 16, shave my head. I picked the hottest day of the year and my wife chopped all my off. It felt very weird indeed.

My planned challenges for July are:-

19. Wear a badly fitted toupee for 3 days

20. Mow the lawn naked (providing I don’t get arrested lol)

21. Pet a snake (does any body have a snake I can pet)

22. Malkins Bank Circular Walk (2.6 miles).

As you know I am doing 45 challenges to raise awareness for kidney disease, organ donation  and raise money for the British Kidney Patient Association (BKPA). So if you want sponsor me, it would be very much appreciated.

http://www.justgiving.com/kidney45challenge/

Catch you next time :).

By the way, if you are not on the organ donation register, sign up below. Organ Donation Save Lives

www.organdonation.nhs.uk/


In May I have completed challenge 13, the hot curry challenge. I made an extremely hot tuna curry with 4 scotch bonnet chilies, 6 finger chillies, 1 tablespoon of hot curry powder and 1 tablespoon of hot chilli powder….. It blew my mind but was rather nice.

Unfortunately I have not done any other challenges in May. But in June I plan to attempt the following challenges:-

14. Learn to dance the Samba (year challenge)

15. Dress up as a women for a day

16. Shave head.

17. Bereten Heath 1 mile walk

18. Write a blog about my condition and share it online with as many people as possible

As you know I am doing 45 challenges to raise awareness for kidney disease, organ donation  and raise money for the British Kidney Patient Association (BKPA). So far I have raised about £290. Some come on every body, please sponsor me,

http://www.justgiving.com/kidney45challenge/

My challenges have been going really well and the BKPA have been very positive about my campaign. I feel extremely positive and happy that the kidney45challenge is having an impact. But what made me smile the most was a comment made on a post I made on Facebook the other day. They said “Wow Darren what an inspiration you truly are. I’m also waiting on a transplant so I completely understand your health situation. God I thought I’m a positive person. You blow me out the water. If only everyone in life had your enthusiasm. Very well done. Incredible. I will try and think up some challenges lol.” This has made me realise that maybe I am making a difference.  

Catch you next time :).

By the way, if you are not on the organ donation register, sign up below. Organ Donation Save Lives

www.organdonation.nhs.uk/


Hi every one.

This is an update on the kidney45challenge. Well, I have completed 3 challenges for march. But due to health reasons (not been well for a week or so) I have had to postpone 2 challenges till later in the year.

The challenges were:-

Challenge 7) Not to drink tea , coffee, coke or any caffeine drinks for a month.

I thought this was going to be extremely difficult for me as I do love a cup of tea in the morning but I have found this relatively easy and not missed tea, coffee or coke.

Challenge 8) Learn to speak Spanish (year challenge).

I have started this challenge and will learn to speak Spanish with my son.

Challenge 9) Dye hair red or pink.

I chose pink. The first attempt to dye my hair was unsuccessful as my hair is too dark. So we decided it was best if we bleached my hair first and dye it blonde before trying to dyeing it pink.

The challenges for April are:-

Challenge 10. Don’t drink alcohol for a month

Challenge 11. Don’t speak for the whole day.

Challenge 12. Complete 25 push ups and 50 sit ups in one go

I am still looking for more ideas. So if you have any challenge ideas please let me know.

http://www.kidney45challenge.com

Why am I doing this? Well to raise awareness for kidney disease and organ transplantation.

 •More than 10,000 people need an organ transplant in the UK.

•3,000 people a year die while on dialysis and more than 350 people a year die while waiting for a kidney transplant, that’s one person every day. The average waiting time for a kidney on the transplant list is about 1,000 days.

•Around 6000 people are on the waiting list for a kidney transplant

•Only 2500 kidney transplantations take place each year.

Organ Donation Save Lives

www.organdonation.nhs.uk/

As well as raising awareness it is my intention to raise money for the British Kidney Patient Association who do wonderful work for those affected by kidney disease by providing grants to those that need it. And without their help last year I would not have been able to go on holiday to Mexico with my family.

Some come on every body, please sponsor me and put yourself on the donor list.

http://www.justgiving.com/kidney45challenge/

Catch you next time :).


Hi every one.

This is an update on the kidney45challenge. Well, what a busy couple of days its has been trying to complete the challenges for February. It has been very tiring.

So what were my challenges for february?

Challenge 3) Not to eat spicy food or any food containing chillies, curry or spices for a month.

I thought this was going to be extremely difficult for me as I love my hot spicy food and have a curry 2 or 3 times a week. At the start of the month Simone, my lovely wife, hid all my spices, chillies and curry stuff at my mother-in-laws so that I wasn’t tempted. And I achieved it :). I managed a whole month without eating anything spicy. And on Tuesday (which coincidently is my birthday) I will treat myself to a curry.

Challenge 4) Get invited to downing street to meet the prime minister.

Well this was sort of completed. But instead of Downing street I was invited to the houses of parliament to meet the prime Minister (David Cameron) and my local MP (Edward Timpson).

last month I sent an email to Downing Street explaining my situation and my 45 challenges. And that 1 of the challenges was to meet the PM. I got a lovely letter back from the PM inviting me and family to see the PM at parliament. So on the 25th february we took the train down to London and was met by a nice young man called Dan Large who showed us around the houses of parliament and explained the history behind which was very interesting. We were then met by Edward Timpson and ushered into an office with David Cameron. David Cameron was a lovely man and took time out of his busy schedule to talk to us. We chatted about my health, my 45 challenges, organ donation and then he had a chat with Oscar about him being Home Educated. I must admit I was bit starstruck and loss for words. It was all very surreal :).

 

Challenge 5) Appear on local radio.

I was invited by Liz Southall from RedShift Radio (which is the local online radio station for crewe) to appear on her shown on Thursday 26th February. We chatted about my illness, organ donation and my 45 challenges.

IMG_20150226_130526

And Challenge 6) Learn to count to 20 in Welsh.

Well I have completed this. This was very difficult as it is extremely difficult to remember things (due to my condition) I found it very hard to retain it. Plus I have been extremely tired and fatigued the past couple of days but I did it. Here is a short video.

So what are my challenges for March? They are:-

Challenge 7. Dont drink tea, coffee, coke or caffeine drinks for a month

Challenge 8. Complete 25 push ups and 50 sit ups in one go

Challenge 9. Dye hair red

Challenge 10. Learn to speak spanish (year challenge)

Challenge 11. Hot Chili or Curry Challenge

I have 35 challenges planned so far for this year, so still looking for more ideas.

http://www.kidney45challenge.com

If you have any challenge ideas please let me know.

So why am I doing this, Well to raise awareness for kidney disease and organ transplantation.

 •More than 10,000 people need an organ transplant in the UK.

•3,000 people a year die while on dialysis and more than 350 people a year die while waiting for a kidney transplant, that’s one person every day. The average waiting time for a kidney on the transplant list is about 1,000 days.

•Around 6000 people are on the waiting list for a kidney transplant

•Only 2500 kidney transplantations take place each year.

Organ Donation Save Lives

www.organdonation.nhs.uk/

As well as raising awareness it is my intention to raise money for the British Kidney Patient Association who do wonderful work for those affected by kidney disease by providing grants to those that need it. And without their help last year I would not have been able to go on holiday to Mexico with my family.

Some come on every body, please sponsor me,

http://www.justgiving.com/kidney45challenge/

Catch you next time :).


Hi every one.

Well, I did it… I managed a whole month without shaving. It was hard at first as it was extremely itchy.

And so today… It was shaved all off:)

So that’s it, the challenges planned for january have been completed. Challenge 2, if you recall, was to stay in bed all day which I did back at the beginning of the month.

My next challenges for february are:-

1) Not to eat spicy food or any food containing chillies, curry or spices for a month. This is going to be extremely difficult for me as I love my hot spicy food and have a curry 2 or 3 times a week. Simone, will be hiding all my spices, chillies and curry stuff. I had my last curry take away for a month last night :(.

2) Get invited to downing street to meet the prime minister. Well I am working on this as we speak. WATCH THIS SPACE.

3) Appear on local radio, Well this is going to happen towards end of february, again, WATCH THIS SPACE.

And 4) Learn to count to 20 in Welsh. This is going to be hard.  :).

I have 35 challenges planned so far for this year, so still looking for more ideas.

http://www.kidney45challenge.com

If you have any challenge ideas please let me know.

So why am I doing this, Well to raise awareness for kidney disease and organ transplantation.

 •More than 10,000 people need an organ transplant in the UK.

•3,000 people a year die while on dialysis and more than 350 people a year die while waiting for a kidney transplant, that’s one person every day. The average waiting time for a kidney on the transplant list is about 1,000 days.

•Around 6000 people are on the waiting list for a kidney transplant

•Only 2500 kidney transplantations take place each year.

Organ Donation Save Lives

www.organdonation.nhs.uk/

As well as raising awareness it is my intention to raise money for the British Kidney Patient Association who do wonderful work for those affected by kidney disease by providing grants to those that need it. And without their help last year I would not have been able to go on holiday to Mexico with my family.

Some come on every body, please sponsor me,

http://www.justgiving.com/kidney45challenge/

Catch you next time :).