Posts Tagged ‘kidney transplant’


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.

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Picture of me after operation

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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 :).


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 :).