If I was being blunt and direct I would say it keeps you alive and away from the dreaded box ! I must warn you that I and many other kidney patients have a strange sense of humour when it comes to disease and death. It’s one of the things that kidney disease does to you on your journey. Let’s face it, it is a real journey.
Kidney disease is far from as simple as that. Receiving the gift of life allows you to experience as near normal life as possible. A transplant is not a cure but a treatment.
When People with renal disease start their own personal journey, there is a certainty about the end treatment options, the options are conservative care, dialysis or transplant.
What is right for me is not necessarily the right choice for you !
When your kidney function drops to an unsustainable level for life the first treatment normally offered is dialysis. My own opinion is that it’s an option to just stay alive, it does not appeal in the slightest.
Basically, the typical regime is to have dialysis 3 times a week and each session can take 4 hours (always depends on the individual) then on top of this time you have the prep and the getting home so this can easily be over 15 hours every week.
Is this an option? of course it is, as I will repeat ! To me it’s a means of keeping alive and that’s it. Some patients successfully have been on dialysis for many years and manage to live a life, but I can only imagine it being far from perfect, especially when you live a very active life. Mind you there are one or two who really push life to the limit on dialysis and I am encouraged that should the time come there is a sort of chance.
So what did I choose, initially I was trying to choose between different types of dialysis until we went to an education session for those with low clearance and that is when I first heard the word transplant, when I say first heard I meant it actually meant something to me personally.
During the slippery slope of losing function life was difficult and dark at times. My wife Jo was a fantastic support for me, no matter what she always had positives on the situation. Don’t know why because as far as I was concerned she had married a dud and no doubt stopping around would spoil her life.
Physically during the decline I never really noticed anything considerable happening, looking back now doing things walking up hills etc was difficult, but of course I had an answer to this and that was to use the car ! Hence the reason you don’t notice as you automatically adapt your life when something is progressing slowly to start with.
You get to the point every few weeks when you go for a blood test when you are thinking when will I start dialysis, when will my life finish (going on dialysis at the time seemed life ending), when will I let my wife down, when will I let my family down, when will I let my Mum and Dad down ? when will I let my employer and friends down and so on and so on constantly thinking about letting people down. You can’t plan anything even simple things.
Ultimately my wife Jo donated Sidney the kidney to me, this was no easy decision. Many think you would say yes please job done, it’s not that easy as many things to through your head. Why would I put someone I love very much through an unnecessary operation, it may make her ill, it may go wrong, what happens if I reject Sidney. These things go around and around constantly. I said no several times to Jo we had many conversations where Jo was trying to convince me to say yes. But I wanted to take my chance on and wait for a deceased donor.
One night (and I remember it vividly still today) we were having the normal conversation in bed about receiving Sidney, me still saying no and then Jo pulled a bit of “womanly I am in charge sentence” out of the bag to convince me. Jo said “by having her kidney it would mean that we could both lead a normal life of which we begun together back in 2000 and enjoy it whilst we were still young. She did not want to be looking after me when there is an option available to us” basically I interpreted it that I was being selfish not having it as it would affect her. If this is what Jo meant it worked and that what I needed a bloody great big kick ! I finally agreed.
Let’s get back on point and talk about the benefits. So, to cut a very convoluted story short I received the gift of life from my Wife Jo. Maybe in later posts I will cover each aspect of the gift of life journey.
The major benefit of a transplant is that it means you can live dialysis free whist it is functioning correctly, this is the most major and positive outcome. Without dialysis this automatically removes all the other negatives to treatment and allows you to live a near normal life. I know the above is only a couple of lines but living a normal life is so special when you have been on the edge.
It has allowed us and I say “us” as it affects the whole family, to live a normal life as I know it, go to work, have holidays, have fun, plan a little further for the future.
You can still do these things on dialysis, but you must meticulously plan everything, it prevents spontaneous decisions.
In the end I am ALIVE so if my cycle challenge can highlight organ donation and allow one single organ to be donated during very difficult times then I have done the job !
Thank you Jo x
This my own perspective.