The Beginning of the End.

Dialysis seems like a distant memory… in fact the reality is it’s closer than I ever thought.

10 years ago this month I was diagnosed with kidney failure I “crash landed” and was put on dialysis just 2 days after being diagnosed. In short, my story consisted of dialysis 3 times a week, 3 hours at a time, for 3 and a half years until I was lucky enough to receive a new kidney in October 2010.

A lot has happened since that day. Amazing things have happened since that day. I have been dialysis free and achieved things I thought would never be possible.

I graduated from Uni (twice), moved out of home, got a full time job, been on lots of holidays, got a doggy, found myself a wonderful man.

Now I find myself back at square one. 10 years older.

I was told at clinic the other day I am 6-12months away from dialysis and needing another kidney transplant. Boom. It hits you like a tonne of bricks. It’s news you’ve heard before. It’s news that you knew would come again one day. It’s news that you cannot prepare yourself for.

The first time I heard that news I was 17, lying in a hospital bed feeling like I was dying (ok maybe an over exaggeration, but I really wasn’t well) I remember crying but it was all a bit of a blur and once I started dialysis I never cried, I have no idea why, I just never did.

Since transplant I am probably the most emotional person I know. I find myself crying at the drop of hat, seeing my niece in her dancing show or watching a television programme.

The second time round I heard the news I was sat in a consultants room, my Mum (and rock) was with me as she always is. “Things aren’t looking good.” The consultant says. I reply with “So it’s the beginning of the end?” “I’m sorry, yes. I know what your next question is… 6-12months.”

So the tears streamed down my face.   I knew things hadn’t been good for a while. I knew my kidney wasn’t behaving as it should. But 6 months. That was a shock.  A bit dramatic but I feel like the last 10 years flashed back before my eyes.

Ok, so I’m not dying and I know I’ve done it before and will do it again.   I’m one of the lucky ones. Dialysis can keep me alive, me waiting for a kidney transplant is not a matter of life and death.

I’m still not quite sure if it’s a good thing that I know what to expect this time round. Things are very different now. This scares me. I feel like I’ve got a lot more to lose. I have a full time job, I have my own apartment, and I have A. He has been fab, not going to blow his trumpet but the whole snot thing I talked about last time… yes there has been a lot of that these past few weeks (from me not him).

It’s a lot for me to take in second time round, but he is coming into the unknown (albeit with the help of google he is educating himself). I wouldn’t blame him for running from the situation, but there’s no way he is doing that (or so he’s told me), maybe I have found a keeper after all.

I haven’t written this blog for sympathy. I’ve written it to get it off my chest, I’ve written it to make sense of everything (it helped first time round) and to hopefully share my experiences and help other people .

I kind of feel like I need to go and write a bucket list of things I want to do before dialysis. I have a couple of holidays booked so if I can make it to them in relatively good health I’ll be happy. I’ve got everything I need in the people I have around me. There is just one person missing. The one person who would know exactly what to say.

And so the journey to the beginning of the end starts…

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6 thoughts on “The Beginning of the End.

  1. You are right she would know exactly what to say! I can’t even come close to replicating it but in sure it would of had something to do with seeing everything as a new opportunity and looking for what good can come out of it. And also about making everyday count. If coming to London to do anything is on that list you know you have plenty of people to assist with that one xxx

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  2. Thank you so much for sharing your story. It’s such an odd feeling to see my thoughts, feelings, AND words come from someone else! (-:

    I was 20 when I was told I would eventually need a kidney transplant. I ended up on dialysis a couple of years later.

    On a side note, I think you minimize the reality of dialysis. Maybe we all do that so that it’s more bearable–not just physically, but mentally. However, I’d hate for people to get the impression that dialysis is a walk in the park, when in reality many people die from complications of dialysis and kidney failure. I almost died twice from blood infections while I was on it. My heart is messed up from it. You’re literally slowly dying and I think the general public needs to understand that. I only mention this because I sat on dialysis for 2 years and no one in my huge family offered to be a living donor. Had I been laying in a bed dying, I’m certain more than one of them would have offered to save my life. However, they assumed like anyone would, that I was fine, relatively healthy,and not on deaths door while on dialysis. So, why would they or anyone else risk their own life and be a living donor if dialysis was a long term, viable option? They wouldn’t and they didn’t because they didn’t understand that i was living on borrowed time. At least that was my experience with dialysis. I hope I don’t come off as being critical of you. I just want to make sure people in the general public fully understand how dire our situation is when we’re on dialysis. I count my blessings every day that my kidneys went and not my heart or liver.

    Anyway, after almost 2 years on dialysis I got my second chance at life. I had my mom’s kidney for 6 years before it failed. Like you said, we know it’s a possibility, but we all hope to be the one whose kidney lasts for 40+ years! Losing it was devastating. Personally, I thought the second time on dialysis was so much worse than the first time. I think ignorance is bliss, or it was for me! My fluids were cut down to 1/2 cup a day and my running time increased from 3 1/2 hours to 4 hours. I thought that last half hour would drive me insane! The worst part of dialysis/being sick for me has always been losing my sense of power and control. I feel as though Shannon is replaced by Patient 0. And I hate that more than anything else! Losing your sense of self….it’s horrible.

    We all do eventually adjust though and find a new normal. After 7 months on dialysis my husband’s co-worker donated his kidney to me. That was 7 years ago! I totally get your comment about crying over everything! I cry seeing my favorite band. I cry watching a beautiful sunrise. I sob at the thought of watching my only child graduate from high school this year! Life is so precious and beautiful and perhaps in many ways, we’re the lucky ones because we experience life in a way, and to a degree and depth that only those of us who have faced our own mortality and come out the other side can fully appreciate.

    I’m so sorry about your kidney. My heart truly hurts for you. I stopped asking the why question long ago. There is no satisfactory answer as to why some people endure so much in life while others seem to skate on by. I have finally come to the conclusion that on the other side of devastation and loss there is always the opportunity for spiritual and emotional growth. Most importantly, there seems to be some greater plan at work….but a plan that serves more than just myself. The man who donated his kidney to me had lived a pretty violent life when he was younger. He told my husband after the transplant that he felt he had somewhat balanced out all the bad he had put out into the world by giving me the gift of life. This man walks taller, seems happier, and I can only assume his two young sons will benefit from the changes in their dad.

    Right now you may not be able to see the meaning behind why you’re meant to traverse this road once again, but I promise the day will come when you will meet a special person, or you’ll be the special person someone else meets, and you’ll understand your why. Perhaps this blog is your why!?

    Thanks for allowing me to chat away. My heart , thoughts and prayers are with you as you transition to your new normal. Thank you again for sharing and expressing yourself in such a beautiful way. Please don’t hesitate to email if you ever want to chat. Bless you!

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  3. Hello, I came across your blog through lots of clicking link to link. I am in the US and have had two kidney transplants 1999 and 2010 (both living donors). I wanted to offer up a little support. I know it totally sucks, but you can do this! When I was finally told it was time for transplant #2, I was relieved in a way. My first had been failing for 6 years! Feeling like crap was just all I knew. I am nearly 5 years post transplant with my second and things are going great!

    I am fresh out of family members ready to hand over a kidney, so I am trying to make this one last.

    Best of luck to you!

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  4. Wow just read your whole blog. Didn’t realise this was happening!!!! I’m kind of in the same boat but with a longer road ahead of me I think. Second transplants and getting to the waiting list again is not child’s play! THhnking of you!

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