Kidney Patient Guide

[bigbuzzard]

Last night I was interviewed by Eddie Mair on Radio 4. (They've just put up a photo of me on the blog here of me doing an exchange in the studio.) I tried to prepare for it by mugging up on figures, and costs, and so on. I wasn't prepared for him to ask me what a transplant would mean to me. As a result, I mumbled a bit about how "y'know, life's ok, I can do whatever I want, blah, blah, blah". Well this is complete and utter bollocks! I lied to you Eddie! If I had a transplant:
- I wouldn't need to be connected bby a plastic tube to a machine all night eveiynight, along with all the setting up and clearing up that has to be done.
- I wouldn't be generating endless bags of plastic rubbish that all gets incinerated, increasing my carbon footprint no end
- I could say 'yes' if someone says how about coming to stay for a few days, without having to spend ages sorting out delivery of fluid
- I could head off into the wilderness without having to lug tons of dialysis fluid along
- I could get on a plane without having to persuade the check in people that this 30kg machine is essential life support gear, and please don't charge me £200 excess baggage.
- perhaps I wouldn't feel so knackered so often.

I'm sure there's more. What about anyone else? Especially if you've already HAD a transplant. What did it mean? I know that it may not all be rosy - anti rejection drugs mean more side effects, for example.
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[Rik]

its a real toughie of a question to answer BB ...
mainly because its a slow downward progression in most cases ... you forget what is like to actually feel well ... therefore you dont miss things as such .. you just forget you used to be able to do them!!

like you say .. not to have to work to a time frame of when your next due to dialyse ... or take into account whether you can or cant go to something because you cant get the supplies up there with you ... etc ...

I guess the answer is the realisation that you feel so much better than you have been since you cant remember is AMAZING!!!!!!!!!!!
but its that feeling that your able to feel the same as the man standing next to you in a queue ... or who your sitting next to on a crowded bus ... well except your rather glad that unlike the man next to you on the bus ... your aware of products called DEODORANT!!!!!
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[Helen Rambaut]

So far it just means feeling well again. To anyone who isnt chronically sick its hard to explain what that means.

Helen

[eliznew412]

If anyone on dialysis dreams of being a film star or going into the Big Brother house, I would imagine it would be easier if they got a transplant. Alternatively Channel 4 my be able to fix something up for us! Now that would be weird - wonder how we would get on it that set up? Have to meet some of you people in person - I'm curious.
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[Angel]

Hi Big Buzzard

This is a difficult one to answer but assuming all goes as well as possible then I would have the kind of life I simply have never known. Having been born with kidney problems and managing to just about last to six years of age without dialysis I really do know nothing else. Although this will be my third transplant the others lasted no time at all-but from a child's perspective I remember one overriding moment from the second one. I was 8 years old and I can remember flying round the playground with the rest of them. It may only have lasted 8 months but that is a moment I have never forgotten.
As for the perspective of the haemo patient it would mean that no longer would 3 days of my week remain a blank. I often feel pretty rough after dialysis so can plan to do nothing that day-sometimes I can but more often than not I have to rest. I now have these as 'my lazy days'.

So in essence I think Freedom of well being and peace of mind-upto a point as know can never totally not worry, but thats my hope. I guess Freedom is the key word:

From dialysis
From diet and fluid control
To travel
To live
To grab life by the hands and go get it.
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[MandyV]

Andy - I also like to persuade myself its not so bad really (and of course it is better than the alternative) but what I look forward to it :
- no waking up feeling knackered, but ignoring it as it is what every day is like
- NO catheter, therefore just being able to leap into a bath / shower without trussing myself up like a turkey, going on those 'wet rides' at a theme park without preparation, going through Istanbul airport without being subject to intrusive questions / searches (somehow they always had a problem with my (plastic) catheter)
- Being able to travel (even just overnight) with just carry on luggage
- Not having more recycling than the whole road put together (and that excludes the clinical waste which is non-recyclable)
- Having a spare room for friends to stay rather than a medical store with a bed.
- Having a bedside lamp and radio, not my APD machine
- Being able to sleep for survival, rather than having to have 10 hours / night in bed
- Being spontaneous - about travel, social etc without worrying about timing, supplies etc.
- Not having my heart leap every time my mobile phone rings at a strange time, wondering if this is THE call
- Being able to pop abroad for the weekend, without worrying how my supplies will get there, and once I am there worrying about having room for the machine, disposing of clinical waste etc etc
- Being able to go to the remote places I holidayed before destinations needed electricity or get there on modes of transport which restrict luggage.
- consistently having energy without forcing it
- not having to worry about fluid levels ... even having a pee like I used to !!

[Alasdair]

To me it would be living a normal life again. In my mind I would be healthy again (I know this is a lie as a transplant is not a cure), but I would not have to worry about diets, fluids, missing social events because I need to go to hospital for dialysis.
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Alasdair.

[bigbuzzard]

Huge thanks for all your replies. It is a difficult subject. I think the reason I answered the way I did on Tuesday was because the 'normal' state of mind for me is much like Mandy. Life's too short to be dwelling on this all the time - nuch better to just get on with it the way it is. But I don't think it's a bad thing from time to time to acknowledge what might be possible, just in case anyone ever takes you by surprise and says "what would it mean if..." - I dont think it does anyone any favours to be playing things down ALL the time...
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Get it from CD Baby and iTunes - All proceeds to Live Life Then Give Life

[tommc]

The freedom to get up and go without carrying a load of stuff no pre booking and thinking about schedules . The ability to travel light again. I would quite like a bath sick to death of showers and not being asked how im keeping Its nice people care but when you here it hundreds of times a month it becomes a bit wearing.

Tom
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Transplanted 31/05/09

http://tommc79.bebo.com
http://www.uktransplant.org.uk

[Joy]