Today has been a bit of an up-down day!
I spoke with one of the other renal nurses, Debbie, to make an appointment to go and see the renal unit and have a chat about my treatment plan. She was very lovely on the phone and said the appointment will take at least an hour. I will be shown around the unit, then have the chance to talk about what options are available to me. It also gives me a chance to ask the questions I currently have whirring round my head right now.
What is the process for living donor transplant?
How long does the process for testing a possible match take?
What is the recovery time for both donor and recipient?
What are the risks of certain anti-rejection medication?
What happens after the transplant?
If I cannot get a living donor what kind of dialysis options are available?
What is the process for starting dialysis?
How ill will I feel?
Will I still be able to work?
I am sure when it comes to my appointment I will have loads more questions and even though I will write these down and take them with me, I will still forget to ask them, or forget the answers!! Thankfully Mark has managed to get some time off to come with me.
Today, after speaking with the nurse, I felt quite nervous and have done throughout the whole day, I guess it is fear of the unknown. Also it is starting to feel more real now. Before, it was just a mix of jumbled words, now those words are turning into actions!
I do sometimes feel quite scared when I allow myself to think about the "what ifs" I just can't help worrying sometimes, what if I do not get a living donor match? What if I do, but it does not work? What if I do get a living donor and they end up ill? What if I end up on dialysis for years before getting a kidney? What if I have to stop working? What if something goes wrong? What if I never get a kidney? How will all of this affect my live and my children?
I also sometimes feel angry and why me! I try so hard, I take my tablets, I watch my health and what I eat, I exercise, I have lost weight and doing everything in my powers to stay healthy, yet it is just not working! It just does not seem fair.
When I am done feeling sorry for myself, I do try to look at the positives. I know about my disease and knowledge is power after all, so I can try and stall the progression as best as I can, which is better than if I did not know anything, then one day end up in hospital hit with renal failure. I can plan for the different eventualities and learn about what the journey ahead could bring! I also have to tell myself, it could be worse, at least I can get better, at least there is something that can be done about it.
No doubt this roller-coaster will have some even bigger ups and downs, I am just pleased I have such a supportive family and friends around me. My next appointment will be on Wednesday 22nd May.