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Limbo

May 12, 2017

I don't know about other people, but for me, this whole dialysis thing is a lot like being in limbo.

This may not be the case for everyone, but my husband was pretty monosyllabic before all of this, so he was never going to be the type of guy to open up about his feelings on being on dialysis. But when you're a spouse of the person going through this ordeal, that can make the situation very lonely.

It's not happening to you, but it is. You want it all to go away, but you can't help. You watch them set up this gizmo that's filtering all the crap from their bodies, but you can't even touch the thing - you can only watch. You sit in the doctors' rooms and hear the words "Your kidneys have failed", and they aren't your kidneys, but you still feel like the air has been knocked out of you. 

It's awful for the people that have this illness. I can only imagine the worry, the anger, the frustration that this has happened to them. People hear the big C and think it's the worst thing that can happen to someone diagnosis wise, but for people with kidney failure, it's almost as bad. You've got the general feeling crap combined with either being at the hospital three days a week to get hemodialysis, or you've got to be home for a certain time to get on your PD machine. You can't eat a bunch of different things, and you're waiting for someone else either to die, or to voluntarily give you one of their organs.  You're always stuck on something.

As with most life-long illnesses, it doesn't just affect the people with the actual diagnosis. As the WAG of a peritoneal dialysis patient, I can't go to bed whenever I want to - I have to wait for my husband to set up his machine. I can't plan a night out with my girlfriends without my daughter's grandparents being available, because he can't get up with our baby in the middle of the night. We didn't even want to plan our daughter's christening because we were waiting on a date for his transplant, and sod's law being what it is, it would probably have ended up being the same day.

 

You can still plan to go on holidays and stuff, but you need to give notice so the machine can be set up. My husband can't go swimming with our child because there's a massive pipe sticking out his stomach and no amount of waterproof plasters would properly protect him. You're in limbo with everything. 

 

Curt got his transplant date last week, but it's still not the end of it. A transplant isn't a cure and it brings a new set of challenges with it. Don't get me wrong. I will never be able to thank Curt's dad enough for giving a kidney up to get Curt on the road to feeling better. What he is sacrificing can never be repaid, ever. But there's still unknown even after the operation. Will the kidney be rejected, will the anti-rejection meds work, will the anti-rejection meds lead to Curt getting a serious dose of the flu, will his disease kill the new kidney? Each new corner turned brings a new step into the unknown. Limbo.

 

I can't speak for people with the disease themselves - I'm just the spouse, but for me, it's hard. At the back of your mind, you're thinking "God, he could die." You see them set up their machines night after night. You see your house slowly get taken over by dialysis equipment, and medicine called neorecormon is now in the fridge where your eggs used to be. All the while, you feel like you can't really talk to the person you want to the most about how it's affecting you, because it's actually happening to them, not you. It is very lonely. 

 

If, like me, this is happening to you, and you don't feel like you can talk to your spouse about it, talk to your renal nurses. They are amazing. They see it from both sides; the patient and the family. They understand how hard it is, and they will listen. Thank god for nurses. This isn't just for people with Kidney disease - this is for everyone. Get talking. Talk to your mum, talk to your best friend. They will listen. I guess what I'm trying to say to others living with something like this; patient or spouse, is that there are other people you can talk to about it. You only need to ask. We may be in Limbo, but at least we're not here alone.

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I don't know about other people, but for me, this whole dialysis thing is a lot like being in limbo.

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