Life on the Transplant List - Danny's Story


My name is Danny I am 46 years old and I'm currently waiting on a kidney transplant.
I consider myself very lucky indeed. Not every patient on dialysis is able to get a transplant.
My story started 25 years ago when I discovered that I was only born with one kidney and I was diagnosed with IGA nephropathy.  It didn't present any problems at first I had a little amount of blood and protein in my urine so nothing to worry about. I was monitored for 5 years and my kidney function remained the same, so no problems and nothing to be alarmed about.
 
Fast forward to 2012.  I had been suffering with breathing problems, I was back and forth to my GP.  They said I had anxiety which was causing my shortness of breath, also said I was asthmatic and gave me inhalers. Nothing worked, this went on for over a year.  I knew deep down myself that I wasn't anxious and never had asthma, but life was pretty busy and you kinda listen to your GP but all the time it just niggled away at me, we do know our own bodies and we really should listen more carefully to our own bodies.
I finally went back to my doctor one morning and he checked my blood pressure and it was sky high, this immediately raised alarm bells and I was sent up to the hospital right away.
They ran a lot of tests and did an ultrasound of my only kidney. They discovered I had a cyst right in the centre of my only kidney, I was told not to worry because they were assured it was benign, but further test had to be done.
So I left feeling so relieved that I know what's wrong. I returned to the hospital to have more tests done which involved an MRI scan of my kidney. I had to wait a few days for the result but wasn't worried at all.
I got THE phone call on 28th December 2012. I was told that the benign cyst had turned out to be a cancerous tumor, I was stunned. I was also told that I may not be suitable for a transplant because I had cancer.
Now if anybody who has ever been told they have cancer, you think that you will go to pieces, but in my case it was flight or fight.
Your body is a truly remarkable, guess which option I chose to FIGHT.
I just wanted it out now if I could have done it myself I would have.
To let you understand how I like to sort things, I'm a fighter and nothing in life phases me. Some people would say that I have ocd, I’m a bit of a control freak and in this case I'm gonna be in control, it's not getting me.
I was told they didn't know what to do with me because I only had the one kidney and it might not survive the operation so I was told to expect to be put on dialysis. When I woke up yes I needed dialysis, let me tell you that was the biggest shock to me.  You hear all sorts of stories about dialysis, but it's not that bad.
Life is completely different now yes I need to be attached to a machine three nights a week, but what's the alternative?? It's a no brainer for me.
I had to wait 6 months to find out if I was suitable for a transplant because of the cancer, again I think of my self as lucky, I had a very slow growing cancer which enabled me to be eligible for a transplant.
I was working full time right up to 3 months ago but if I am honest I was doing too much. I'm a hairdresser so I'm on my feet all day and at the hospital 3 nights a week. I have recently cut my hours down to 3 days a week. For me it's all about being in control which I'm sure it is for most people with a chronic condition.
Dialysis can be tough sometimes yes I said it's not all that bad, but sometimes it's not great. We have a fluid restriction I'm allowed only 1 litre per day which I find the hardest. We are not allowed coffee which is so hard for me. A lot of food and drink we are not allowed.
But on the up side there is still a lot of food and drink we can have. So rather thank thinking about what I can't have I concentrate on what I can.
I still go abroad on holiday, I love my holidays, it's all made possible by the great team of holiday coordinators at the Royal.
Loads of things have changed in my life, no one really knows what ahead. For  me it's about not what's happened to you in life it's about how you deal with what's happened, don't get me wrong some days I'm grumpy and thirsty and not happy but I will get a transplant at some point.
Being on the transplant list is a very surreal experience. You're waiting on your phone ringing all the time it can happen 24/7. That itself has its ups and downs. I received that call last year and was so excited about getting a kidney, I made my way to the hospital at midnight and waited it was the longest night of my life.  Unfortunately for me the donor organ was not suitable. I was pretty upset but this is what sometimes happens while people are waiting, it's one of the downsides.
Life is good for me and it really helps to remain positive as hard as it may be at times but there's no point in being down it makes things harder. As I have said before I really do consider myself lucky living with kidney failure is problematic but not impossible.
I'm currently looking to find my own living donor which hopefully will give me the best option on a very healthy future. Dialysis does not stop you living. It's just a different kind of living.
12/01/2016