EPOMAN... Promoting Transplants.. MUST READ!!

[kevno]

OK Here's my two Penny's worth

Dailysis keeps us alive and that is all, for some patients who get longer dialysis life is better for them. But many patients only get 4 x 3 hours a week in centre treatment, which really is not enough. On dialysis over the last six years I have had a lot of complications. Including a heart attack. The problem with my leg, the trouble with that was increased because of haemo. I used to think CAPD was great, the answer, no need for a transplant on that. That was until that nearly killed me, I was on it too long I got Encapsulating peritoneal sclerosis (EPS)

I know about Transplants from both sides. when I had my transplant in 1980 the hospital tried out this new wonder drug on me. Cylosporine A my mum and dad had to sign for it to say I could have the new drug. But the Doctors were not too sure how much to give. So the Cylosporine A damaged my Transplanted Kidney. This drug is still used today, and it is know that it damages the Kidney? I have been on wards with patients who have had heart transplants and liver transplant, they are on dialysis because of Cyosporine A. Thats enough of a rant about Cyosporine A.

I had my transplant for nearly seven years, never worked right, always in and out of hospital. High BP, the Kidney rejecting and so on. But for that seven years I was not on Dialysis I could eat and drink what I wanted too. Plus for at least 5 of the seven years I was felt really well, and was able to do anything I wanted to do at any time that I wanted to do it. I have now been back on dialysis for over 18 years. I would have now hesitation in going for another Transplant. Just the chance of getting away from that Bloody Haemo machine. Plus the thing about the Drugs, we are already on drugs for life on Haemo. Plus dangerous ones at that. Just read your side effects on your drug packages.

There are negative things about a transplant. My God have have seen most of them first hand, for one my girlfriend died while having an Transplant. But I am still willing to go through that fight for that Transplanted Kidney for how ever long I may have it. I do not wish to die on Haemo. I hate being a puppet, that three times a week, when I have no choice but to go to Hospital for Haemo.

You can call a Transplant just another treatment for Kidney failure. Been reading Zack's stats, now you know how I feel about stats But that 4 in 10 chance of keeping an transplanted kidney for 10 years looked pretty good to me. After that 2 in 10 chance with my leg.

Kevno

[angieskidney]

YA! I mean ... you can only go by stats as a guideline but everyone will have a different experience than anyone else as everyone is unique. You just have to go in prepared and hope for the best. Try to live for today and take a chance! I know I want to give it another go!

[Panda_9]

I did very well when I had a transplant. I hardly ever got colds or viruses or anything. I did have a virus not long before I started getting symptoms of kidney failure (undiagnosed), so I am wondering if that virus caused the transplant to fail. Then about a year or so before I started dialysis I had an extremely bad virus that lasted for over 2 weeks. I have never felt so sick in my life. Other than that I was in great health. The key is hygeine! Dont touch your face or mouth or any food unless you have scrubbed your hands. ESPECIALLY if you are dining out. When I come home from being at the supermarket/mall, the first thing I do when I walk inside is scrub my hands. It wont totally stop you catching anything, but it will certainly be a big preventative.

[BigSky]

Then how come my Neprhologist told me that I couldn't teach?

I had already had chicken pox before but since it was right after my transplant they put me in isolation when a kid on the same unit floor that I was on got it.


**BUT I have known kidney transplant recipients who have had children and are fine so I don't think it is a huge worry .. just a procaution they like you to take!

edit: And no I didn't get chicken pox the second time. I was in isolation so I was protected but the nurses told me that with my low immune system that I could get it again.

More likely because of the other things kids catch.  Namely colds and the flu.  Which you will have no immunity too.  As to chickenpox they may have been trying to be safe.  Personally I caught chickenpox twice.  Once when I was a little kid and then again when I was about 10.  That was without a transplant.  It is possible to catch them twice but at the time I remember being told it was not all that common.

Here is a link to a site that gives out some info about different things concerning this chickenpox, colds, etc.

http://www.kidney.org.uk/Medical-Info/transplant/txinfect.html

[Zach]

I did very well when I had a transplant. I hardly ever got colds or viruses or anything. I did have a virus not long before I started getting symptoms of kidney failure (undiagnosed), so I am wondering if that virus caused the transplant to fail. Then about a year or so before I started dialysis I had an extremely bad virus that lasted for over 2 weeks. I have never felt so sick in my life. Other than that I was in great health. The key is hygeine! Dont touch your face or mouth or any food unless you have scrubbed your hands. ESPECIALLY if you are dining out. When I come home from being at the supermarket/mall, the first thing I do when I walk inside is scrub my hands. It wont totally stop you catching anything, but it will certainly be a big preventative.

That's why a lot of folks are now using hand cleansers such as Purell.  They carry it around wherever they go.  It's referred to as a hand sanitizer.  Hospitals and other health facilities are using them.  They have dispensers on walls in the hallways, etc.  They've become quite popular ... just beware of imitations that have inferior ingredients.

[angieskidney]

Very good advice. Back when I had a transplant was before they had those hand sanitizers. All the hospitals love them!

[Black]

Very good advice. Back when I had a transplant was before they had those hand sanitizers. All the hospitals love them!

My cousin had a heart transplant several years ago when he was in his forties.  He has bottles of the stuff all over his house and always carries one in his pocket.  He uses it frequently when he's out in public --  after he handles money, shakes someones hand, touches the handle of a shopping cart, and always before he gets into his car and touches the steering wheel.  It's a habit now and he does it without even thinking about it.

[Black]

Very good advice. Back when I had a transplant was before they had those hand sanitizers. All the hospitals love them!

[kevno]

After I had my Transplant never thought much about catching anything, caught chicken pox off my little sister got put in isolation for two weeks because of her  Went back to school, went on school holidays sailing climbing and so on. Just treated myself as normal as possible, always took the tablets. Never have not taken tablets. Never will not have to take tablets. I suppose it is a lot different now, it was 1980 when I had my transplant. We were told to do everything a normal person would do (what ever that is ) Just to get on with our lives. Go out and have fun, but I knew my damaged Transplanted kidney would not last forever.

[goofynina]

The good thing Kevno was you LIVED your life to the fullest with the transplant,  what if you had done nothing out of fear of your transplant rejecting and it still rejected?  I am happy that you did those things cuz i live by: the only things we regret in life are the risks that we DONT take.  Sounds like you had a blast and i am glad you got to experience that much.

[Panda_9]

I was told I could do whatever I wanted, except for playing heavy contact sports like football. The hospital I go to has "debug" on the end of every bed and the doctors are to use it in between contact with patients. They seem pretty good at using it. Saves water too. I wish I could get that one for home use, its just like wetting your hands and drys with no residue. The one I get from gambro is gooey, and if you wet your hands afterwards they become slippery, which makes it difficult when trying to handle the lines during priming and what not. I dont bother using it anymore.

[sandman]

That's why a lot of folks are now using hand cleansers such as Purell.  They carry it around wherever they go.  It's referred to as a hand sanitizer.  Hospitals and other health facilities are using them.  They have dispensers on walls in the hallways, etc.  They've become quite popular ... just beware of imitations that have inferior ingredients.

I don't mean to interupt but I have tried a few of those antibacterial soaps and cleansers and they have all dried my skin out something awful.  Does anyone know if any of these types of cleansers that has lotion in them?

[Zach]

Purell® Instant Hand Sanitizer Moisture Therapy
Purell® with Aloe Instant Hand Sanitizer

From what I understand (and I may be wrong) products containing less than 62% Ethyl alcohol may not work as well (if at all).

[angieskidney]

Ya some do dry your hands out but just looks for the ones he suggested or any that say they have moisterizers in them! They are the only ones I use!

[sandman]

Thanks Zach.  I will check those out.

[Panda_9]

Any soap is going to dry your hands out because the rubbing action is stripping your natural moisture. Its important to keep your hands moisturised in between washing with a moisturiser. Dry or cracked hands are a good carrier for bacteria, so keep them soft and supple!

[sandman]

I try to amber, I really do.  But it's not all that easy when your turning wrenches on motor vehicles for a living.  What I have been doing is wear latex gloves when I work and I do wash my hands throughly once when I am ready to leave work and again when I shower.  I have been trying some weird, no name antibacterial lotion but it has an awful smell.  My cat wont even come near me when I break that stuff out.    I won't be buying that again.     Any recommendations?

[Joe Paul]

When I was working as a mechanic, there was this stuff called "liquid gloves"
A quick search, I found this http://www.alibaba.com/catalog/11163988/Hands_Plus_Liquid_Gloves.html

[Panda_9]

You dont have kidney problems though do you sandmansa? Why do you wear latex gloves at work? If you are wearing gloves, put moisturiser on first, then a pair of plain cotton gloves, then your latex gloves over the top. See how that goes. Or instead of that, just wear a decent pair of garden gloves or those hard yakka type gloves you see in hardware stores.

[angieskidney]

My hands would dry out a lot when the dialysis unit (when I was on PD) told me to use hand sanitizer instead of gloves as I had for years. I use a brand called one Step with Aloe. Of course that won't help Sandman He should just take Joe Paul's advice

When I started dialysis for the first time in 1990 my hands were always dry as you had to wash your hands (I was doing dialysis 4 times a day every day .. CAPD) for a minimum of 3 minutes I seem to recall.

[Joe Paul]

Working with any type vehicle, the grease and dirt get ground into your hands, and washing them allot makes your hands raw, especially when cold weather sets in. Also, wearing any type gloves, its hard to get the feel of what it is you are doing, kind of hard to explain, unless you've tried doing this kind of work. Thats why I say try the liquid gloves, worked good for me.

[sandman]

When I was working as a mechanic, there was this stuff called "liquid gloves"

Thanks Joe Paul.  I use to use some lotion my mom use to get for me when she was doing that avon thing.  I think it was called "silicone glove" or something like that.  I may give that a try.  Is it only available online?

You don't have kidney problems though do you sandmansa? Why do you wear latex gloves at work? If you are wearing gloves, put moisturiser on first, then a pair of plain cotton gloves, then your latex gloves over the top. See how that goes. Or instead of that, just wear a decent pair of garden gloves or those hard yakka type gloves you see in hardware stores.

No amber, I don't have kidney problems and hopefully, I never will.  I wear latex gloves to help prevent grease and grime from getting ground into my hands and under my finger nails.  The chemicals that my hands are exposed to every day, can and will cause the skin in your fingers to dry out so severely that they can crack and bleed.  Especially near the finger nails.  It can get very painful, trust me.

You can't really ware anything heavier then latex gloves most of the time because you need to be able to feel what you are handling and need to turn small nuts and bolts with your fingers to get them started.  Much harder to do when your wearing something like gardening gloves.  Although, I do wear heavier mechanics gloves over top of the latex gloves when I need to handle bulky, sharp or hot to the touch meterials.

[Joe Paul]

Your welcome, and no, you can find it at the store, though I cannot recall what store I did get it at.

[Panda_9]

I was doing 6 PD exchanges a day, so thats 36 minutes of hand washing!! I didnt do 6 every day though, it was just rediculous to fit it all in, have a life, and get some sleep as well.

sandmansa, surely you could find some cotton lined type glove that arent too thick? Are rubber washing up gloves too thick?

[angieskidney]

Wow!! 6 PD exchanges a day?? I found 4 even hard to fit in! How did you ever do it? At what times did you do each exchange?