Firstly thanks for popping by - this is my first ever blog and hope to move or inspire you.
I am 30 years old with packed up kidneys,that has been on the transplant waiting list for about 4 years and I am on peritoneal dialysis. I have to hook up to my machine every night for 9 hours to stay alive. I have not always been on dialysis - I started in August 2010 - but ever since I started it, life has never been the same!
Life before dialysis was great! I started my work life within the caring sector and loved my job working with adults who had mental health problems to the homeless. I eventually got a job working in a children's home and this is where I was the happiest. I worked in several different homes but finished off working with children with learning difficulties. By this time it is 2006, I was working hard and felt like I was going to go far.
A year later though, I was feeling tired and loosing motivation - I was usually the 1st in and the last out and did all the jobs that no one really liked doing. I pushed my self whilst on shift not to let my work mates down but at the same time all I wanted to do was sit down. I thought it was just me being lazy! I eventually put 2 and 2 together and realised that my long standing illness was starting to take hold.
I was diagnosed with polysystic kidney disease when I was in primary school, so I have always known that my kidneys would get poorly some day, just that I thought that they would be old when they did pack up! I have always been under a consultant but never paid attention to my blood results - I used to walk in and this was the typical scenario:
Doc: "Hi Leanne, how are you?"
Me: " Yea I'm fine thanks, nothing new"
Doc: "lets check your blood pressure and get some bloods...yeah your blood pressure is on the high side so need to make sure you take your tablets"
Me: "OK doc - see you in a year".
I never thought to mention that I was tired, sleeping a lot and struggling at work, I honestly did think it was just me being lazy.
So eventually my doc and I had the conversation that my my kidneys were going into renal failure - a conversation which I did not expect nor like. The doc that I had known from being 16 had to refer me to the pre-dialysis clinic which meant increased frequency of appointments and more tests. The time from me being told my kidneys were failing to starting dialysis was 3 years. I didn't think they would last that long but in a way I was glad to start dialysis because I felt shocking. In this time between starting dialysis was quite strange, I was 28 should have really been starting a family and getting on in life and getting married, I had just started a law degree and knew that at some point during my degree I would have to start dialysis. I stuck on at my degree hoping for the best and I am glad that I did (just got my final results of a 2:1!).
But it was like a whirlwind, all of a sudden I was taking more tablets for other problems caused my my failing kidneys, I had to have iron infusions (which I had no idea what these were), had to start injecting myself with a hormone to help me keep my haemoglobin levels up and had to start a special low phosphate diet.
Planning which type of dialysis to do was also difficult. I could have haemo dialysis which is the type where you go to the hospital 3/4 times per week, or the type which I am on now. The only thing with the type I chose was that I had to have a peritoneal catheter placed in my lower abdomenn, which technically I have a tube that comes out of my belly. For a young woman to have something like this was a terrifying thought. Would people see it? Will my fiancé find it repulsive? Will I freak out seeing it? I remember crying when I got home thinking that I would rather not have dialysis and die than have a tube out of my stomach (silly I know now). I almost chose haemo but my lovely fiancé did some research and asked his cousin who is a doctor what he would choose, and he said PD (peritoneal dialysis). So the decision was made but I still had doubts - but I couldn't talk to anyone about my feelings. To everyone else they would have got the tube fitted if it was going to save their lives, but until you have to make that decision for real its much harder.
Now I am on established dialysis - its been a rocky road because the tube had moved a few times causing the dialysis to not work, so have had several surgeries to correct it. My life is quite different from before - obviously I am restricted in what I can and cant do now but I do try and not let this illness stop me. As I said above, I have completed a law degree whilst going through renal failure, I am getting married in Cyprus this September, and most of all I have found a donor! He is my fiancé's best friend who has been through all the tests and trips to Leeds St James Hospital and we plan to do the transplant in January next year. I have had to postpone my legal practice course but its a very small price to pay for this wonderful gift! I am one of the lucky ones to be fortunate to have someone offer to donate. Some people are on the list for years and no possibility for family to help them.
So I know this has been long winded but the reason for the blog is to keep a diary of waiting for a transplant. I will not lay idle in the meantime, I aim to raise awareness and hope to inspire people to sign upto the register. Any questions or comments are welcomed.