Do you rule your kidneys or do your kidneys rule you?

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Andy
Posts: 856
Joined: Sat Apr 24, 2004 1:02 pm
Location: Cardiff, Wales- now Christchurch New Zealand

Do you rule your kidneys or do your kidneys rule you?

Post by Andy »

Been thinking recently?
Do you kidneys dictate what you do in life? or do you get on with your life and allow your kidneys to run parallel with it.
for example, i had my transplant a few years ago now, and i live my life and take my tablets, n i dont still go on about when i was on dialysis, n relate to how bad i was before, i just get on with my life.
where as ive got a friend who had a transplant and they still go on and on about how they were on dialysis and how hard done by they were and how even now they have a transplant its as if they want to be back on dialysis so to get more support.
So i guess if your on dialysis, do you push your boundaries, like have an extra glass of water, or eat that extra chocolate bar. oir do you stick regimently to your diet.
I know and understand that some people unfortunately cannot "afford" to mess about with their diet and such like.

Just a thoguht though.

Andy x
We are the way we are, if we werent, I wouldnt be me and you wouldnt be you!

www.lltgl.org.uk
tommc
Posts: 665
Joined: Fri Dec 02, 2005 2:59 pm
Location: Wishaw, Scotland

Post by tommc »

Hi

I try and kep a resnoble check on what i eat and drink but if i want something like a pizza then i wll have it same with fluids im not going t stay thristy for the sake of not carrying a few hundred extra mills. I dont see the point in complaining if dialysis is that bad then you have the choice to stop with all the consequences of doing so.

Tom
Transplanted 31/05/09


http://www.uktransplant.org.uk
Marion
Posts: 51
Joined: Wed Aug 02, 2006 7:02 pm
Location: Shepperton, Middx.

Post by Marion »

I have the same attitude as Tom. While I have no intention of doing myself harm by ignoring fluid restrictions / diet altogether I'm a great believer in Quality of Life - if I'm thirsty I'll drink a bit extra and not worry about it. If I fancy a chinese takeaway then I'll have one, albeit rarely! Life is too short to get paranoid about such things if there is no need to!

So yes, I definitely push the boundaries without going overboard. If I've pushed the phosphates / potassium limits too far then I behave until they come back down. :wink:

Marion.
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

living life and can't believe some people!

Post by amanda in CA »

Interesting question. I believe that on dialysis or with a transplant I live my life to the fullest extent possible. That doesn't mean that I go and try and climb a mountain or some such thing, that isn't what I would have done, with or without illness as I am just not that sort of person anyway. However, I do try not to let it dictate my life. This is much easier with a transplant, since it gives a person the opportunity to live a much more 'normal' life, albeit with the side effects of medications, and regular medical checks, and of course, the background fear that it will fail. Even on dialysis, I try to live my life as normally as possible, within the incescapable constraints that the treatment places on me, ie care with diet, the fact that I have to lug the machine etc. with me whenever I travel, and the fact that I have to plug into the thing each night. Nonetheless, I do expect and hope that others will recognise that my illness does place issues upon what I am capable of, eg. energy issues, and that have major organ failure, IS even in this day and age of advance medicine, a serious and life-impacting issue.

This is not so much related to dialysis and I digress somewhat here, but more to the fact, that people tend to make assumptions about people in general without a moment's thought. For example, I blew a woman off the other day. Both she and I are selling our houses. She has 3 children, I have one. Every time (and I mean every time) I mentioned something about how busy I was, she threw into the conversation about at least you 'only have one child'. Not once did I bring into doubt that having three children when selling a house was easy. Not once did she consider that there may be other issues in my life. In the end, when she actually butted into a conversation with someone else, I told her straight that people DO have other issues in their lives that can make things difficult and told her that I am on dialysis and how it wasn't my choice to have only one child but the illness dictated that to me. Wow, did she look embarassed and did, I feel good that I had finally got it across to her that she was being thoughtless. Strangely enough, when I spoke to her the following day, she didn't make her usual comment. As another example, of this, I have a friend who had a child after 6 IVF attempts. She overhead a woman (who it appears has babies as easy as shelling peas) stated that her and her husband were planning to have another baby towards the end of the summer and then stated that she couldn't understand how people would have only one child, and how selfish they were. This statement was made in what is an affluent area with a lot of post career women falling into conception issues, and my friend soon put her straight on that one, and suggested that she didn't in future make such statements without a little consideration first into why some people only have one child. Links in a little bit to the other woman's comments somewhat I thought.
eliznew412
Posts: 440
Joined: Sat Aug 05, 2006 7:16 pm
Location: Bristol UK

Post by eliznew412 »

Being a renal patient will continue to influence our lives in subtle and obvious ways other than just physical until we get some real progress with renal research and new and or very improved treatments. There is just no way of denying it. I have also so found public assumptions and assumptions about how it affects me are wildly inaccurate, assuming and insenesitive. Its part of the experience of being a minority group and can be quite tiring to correct - and sometimes I don't bother. Roll on renal research and new & better treaments.
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JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

I definitively try not to let dialysis get in the way of my life. Sometimes it does but it's one reason I'm aiming for home haemo. I can be more flexible. I'm meeting new, non kidney patient friends, which at the moment is good for me. And spending less time on here (as you've probably noticed. Sometimes my life just doesn't match up with dialysis and that's were there are very different aspects of who I am.

It's taken me a long time even to begin to work out what I think I want to do with my life after the knockback of a few years ago.

Over the years kidney failure has given me new friends, I've lost some of them, either physically or due to disagreements. We may be in the same boat but we're all still human, and out blessing or curse, is a diversity of interests & beliefs.

I wonder sometimes how much kidney research (and not just the organisation) Is looking at the 'base possibilities' and cause of kidney failure from a bio genetic level. And WHY people get kidney failure. Or IF they're even researching that.
I've got my thoughts on that but its another topic.

J
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
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Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Post by Rik »

quite simply .. no
you dont have to be ill just because you have an illness ...

I know someone who berates other people behind their back if they even mention they are having a bad day with their REAL illness ...
but takes herself off to bed at the first sign of a simple headache ... and does nothing but moan for sympathy all the time ... its quite pathetic really ... goodness know what they would react if they had a REAL illness ... :shock:

we all have our bad days when we really cant ignore that we have kidney problems and other problems too ... but there is no reason we have to let it rule our lives the rest of the time ...
:0)
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

real illness

Post by amanda in CA »

My husband is a big wind-up merchant, and to tell the truth, a bit of a lightweight at times. Whenever he gets a cold or other some-such mild malady, he makes a point of telling me how sick he is with his 'real' illness, not a wimpy kidney problem, but he is just joking. He gets allergies and he always refers to them as 'my' allergies rather than just allergies. In an arguement I told him to stop whining about 'my' allergies. We got over the arguement and now the 'my' bit has become a bit of a joke between us. I think that it is great that we can have a laugh about it and see the funny side. Now and again we do get a bit of friction because I don't think that he is being caring when I want him to be, but we have been married for 21 years and he has been there for me through thick and thin. Although we have our ups and downs, I know that he is truly the best guy that I could have married. (please don't vomit!)
Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Post by Rik »

awwww Amanda .. you brought a lump to my throat ... :wink:
lor-lor
Posts: 48
Joined: Tue Mar 06, 2007 1:06 pm
Location: Hartlepool, UK

Post by lor-lor »

awww bless. thats so sweet!
My boyfriend just tells me to get sorted so we can go out lol
Bless him.
I think everyone feels the same about their lives and Kidney problems.
I know at first it didn't rule my life, I sorta just denied the fact I was going to need dialysis and tx someday, I was a stubborn 14 year old though lol

Then it got to the point where it did take over and It was an excuse for everything! But now I think what the heck, Ive gotta live my life, Im 17 and everything revolved around kidneys/medication/hospital. Not anymore, I just get on with it, and as everyone knows it is hard at times, especially when things are getting worse, but I always look at it as my special thing, its what makes me, me and tbf I could be in a worse situation.
Gots to keep smiling =)
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

to Lor-lor

Post by amanda in CA »

Great attitude to have. Not sure I would have had such a great attitude at such a young age. Didn't find out about my probs. until I was 24 although I am pretty sure that they had been lurking there from my late teens.
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