Hello. I am a newbie and some b*stard stole my life.

[Padster]

Hello. My name is Padster. I stumbled on this website purely by chance and I like what I see. I am not on dialysis yet (please don't boot me!) but the docs are preparing me for it and I am starting aranesp injections to combat the anaemia. I have to say, life has become one giant rollercoaster since getting diagnosed with ESRF. I lost my first kidney at age 7 to a staghorn stone and now I am about to lose my remaining one at 35. I can cope with the pain and misery that is to come, I have had to do that all my life and am used to it. But its the other symptoms of kidney failure I don't like: the alarming weight gain, and the prospect of stinking of piss like an old man. You guys really have my sympathy. This stuff is hard to take at times.

Anyway, just thought I would introduce myself.

Topic moved to proper section.

- Bajanne2000
Moderator

[hyperlite]

But its the other symptoms of kidney failure I don't like: the alarming weight gain, and the prospect of stinking of piss like an old man. You guys really have my sympathy. This stuff is hard to take at times.

Anyway, just thought I would introduce myself.

1) Weight gain? what weight gain? If anything, dialysis has caused me to lose weight!

2)Stinking of piss like an old man??? hahaha I dunno who you've been smelling, but it sure isnt me! a daily shower, and some "pit-stick" keeps me smelling "so fresh and so clean"

[Padster]

I was talking to a guy who lives near me. He has been on dialysis for years and told me about the problems I will experience BEFORE I go on dialysis, namely, weight gain and reeking of urine.

[hyperlite]

oh.....before you start dialysis...well from my experience, I didnt really gain that much weight or smell like urine. But I was always freezing cold, had no energy, and felt nauseous when I woke up in the morning and had a shower. But hey, everybody's different!

[kevno]

Hi Padster

Welcome to the site.

Reeking of urine Weight gain

In may experience it is the opposite to weight gain just before I lost my kidney. Plus the same with a lot of other renal patients I know of. Reeking of urine, only if you do not take a bath/shower I do not know who Gus as been smelling

I was tired all of the time, no go at work, lost over 15kg.That was from 65kg to 50kg. Bruised very easy, the smallest bump and a big bruise would appear. Had a Blood transfusions every two weeks, Hb was down to 7.5. Very bad head aches every sngle day. I felt 100% better after a couple of weeks on CAPD.

Kevno

[Epoman]

Hello. My name is Padster. I stumbled on this website purely by chance and I like what I see. I am not on dialysis yet (please don't boot me!) but the docs are preparing me for it and I am starting aranesp injections to combat the anaemia. I have to say, life has become one giant rollercoaster since getting diagnosed with ESRF. I lost my first kidney at age 7 to a staghorn stone and now I am about to lose my remaining one at 35. I can cope with the pain and misery that is to come, I have had to do that all my life and am used to it. But its the other symptoms of kidney failure I don't like: the alarming weight gain, and the prospect of stinking of piss like an old man. You guys really have my sympathy. This stuff is hard to take at times.

Anyway, just thought I would introduce myself.

Did you not see the section called "Introduce Yourself"?  This is the "General Discussion" section for general discussion, not introductions. 

But anyway "Sticking of piss"? Here's some information for you, think about it for a second, if someone is on dialysis and their kidneys do not work, how could that person stick of piss? 

Mods, please move this to the proper section. 

- Epoman
Owner/Admin

[Panda_9]

Hey, you are still alive, so no one has stolen your life!
I gained alot of weight pre Dx, but I dont know if it was due to the illness or what.
As for smelling like urine, dunno where that came from. Unless you wet yourself and dont change or shower perhaps 

[Bajanne]

Welcome, Padster!  I just moved your topic to its place - in Introductions.  This is an excellent site to prepare yourself for dialysis - that is what it did for me.  Just keep reading the posts, and keep sharing with us.

[Sara]

Welcome to the board, Padster!

[Naggy6]

welcome padster

I'm with the others predialysis I dropped down to about 85lbs and I hadn't peed in like two months so smelling like pee wasn't a problem. After all you can't smell like some thing you don't even have.

[Rerun]

Hi Padster and welcome to the site.  If anything you'll smell like diarrhea!     Doesn't that just make your day!

[Padster]

Oooh sh*t...

[jdat]

Welcome on board

but don't worry about weight gain.
There are other things that may cause it ( prednisone did it for me but I only was on that evil drug for 3 months ).


Since starting dialysis january 2005 ( did haemo briefly then peritoneal ) I went from 210 pounds ( 95 kilos ) to 152 pounds ( 69 kilos ) and I am willing to bet it is going to go down some more.

Can you say weight lose??


I guess I also started getting paranoid about my self appareance six months after starting the whole craziness and started worrying about my self image more ....

and as far as I can tell I don't reak of anything 

[Bajanne]

I agree.  I started dialysis at 219 in September 2005, and I am now 192.  And I smell quite good, if I do say so myself

[tamara]

Started dialysis at 105 kg (approx230 pounds) am now down to 80kg (approx 175 pounds).Took approx 9 months.

Is also due to the fact that I couldn't get on the transplant list until I got down to this weight for the surgeons to be happy enough to operate on me.

So off to the gym I went and only did the gentle stuff like water aerobics, Pilate's and yoga.

[Panda_9]

When I first went on PD I was 117kgs, and after 12 months of not eating I lost 30kgs. Now Im on nocturnal and feeling alot better, which means Im eating normally. Ive put on 5.5kgs 
I need to get the weight off so I can have a transplant. It is just so hard. I mean, I could easily live on salads, fruit, and tons of water, but noooo you cant have that on dialysis. I am trying to stick to a healthy eating plan, but now I can eat whatever I want, some things are just too tempting. I am slowly increasing my mobility, with little bits of walking. If I want to go anywhere and my OH is at work I walk to the bus stop. Yesterday I didnt want to wait for the bus so I walked all the way to the shopping centre. Must of been a couple of klms. I got just over half way and I was buggered. Dont think ill be doing that again in a hurry lol

[angieskidney]

You know .. EVERY SINGLE PATIENT with ESRD .. every single situation is DIFFERENT!

They told me that when I was at the Toronto Hospital for Sick Kids.

I was born sick and yes I have heard of MANY cases where patients smell of urine. Infact, for the first 16 years of my life pre-dialysis but sick the whole time ... in the last few years of the first 16 especially, my mom had said that I had this distinct smell....

It is partly in the breath .. smelling toxic like sulfur ... and sometimes out of the skin comes the smell of urine.

Now remember every case is different so you can't go around saying "just shower" because I remember how much that hurt as a kid since I showered ALL the time!!

Please try to be understanding of other people's circumstances.

I really love this site (just found it today from D&T City) and this site was made for the same reason I made my own site but this one is more popular than mine!

I am glad this site was made! I have never found a place to vent like this before! The only thing I would add to this is the recommendation that people are more understanding of the fact that one huge thing that makes a difference in different ESRD patients is if they got "sick" as an adult or were born "sick". It DOES make a HUGE difference! Trust me as I am speaking from first hand experience!

[Epoman]

You know .. EVERY SINGLE PATIENT with ESRD .. every single situation is DIFFERENT!

They told me that when I was at the Toronto Hospital for Sick Kids.

I was born sick and yes I have heard of MANY cases where patients smell of urine. Infact, for the first 16 years of my life pre-dialysis but sick the whole time ... in the last few years of the first 16 especially, my mom had said that I had this distinct smell....

It is partly in the breath .. smelling toxic like sulfur ... and sometimes out of the skin comes the smell of urine.

Now remember every case is different so you can't go around saying "just shower" because I remember how much that hurt as a kid since I showered ALL the time!!

Please try to be understanding of other people's circumstances.

I really love this site (just found it today from D&T City) and this site was made for the same reason I made my own site but this one is more popular than mine!

I am glad this site was made! I have never found a place to vent like this before! The only thing I would add to this is the recommendation that people are more understanding of the fact that one huge thing that makes a difference in different ESRD patients is if they got "sick" as an adult or were born "sick". It DOES make a HUGE difference! Trust me as I am speaking from first hand experience!

Very true, It's wayyyyy different if you got sick at birth compared to living a full healthy life and starting dialysis at 60+

But getting back to that smell, it is the ammonia smell that you are talking about, it's not really piss but ammonia. Sometimes I can taste it in my mouth.

- Epoman

[angieskidney]

Very true, It's wayyyyy different if you got sick at birth compared to living a full healthy life and starting dialysis at 60+

But getting back to that smell, it is the ammonia smell that you are talking about, it's not really piss but ammonia. Sometimes I can taste it in my mouth.

- Epoman

Really??? Oh okay. Thanks for replying so fast.

[kitkatz]

Angie, I have bookmarked your site. It looks cool. Thanks for sharing.

Katherine

[Panda_9]

Nice choice of words there epoman lol
I get weird tastes in my mouth all the time, the most annoying is a metalic taste, especially if you are in the middle of eating!