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Python
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Bobby the Python

« on: August 20, 2006, 09:19:39 AM »

Hi.  I'm Python and Mum to a 19 year old son who has been on dialysis for nearly 5 years.  He's on PD (or was) but has had to go on haemo for at least 3 months because he came down with appendicitis :(  The offending appendix is now in the bin so that will never bother him again ;D

We have Alports Syndrome, a hereditary, progressive, degenerative kidney disease which affects males usually more than females.  At the moment I don't seem to have much kidney problems (just a bit of hematuria but not so much that you'd notice) but my son has the whole shebang.

We try to carry on a normal life round dialysis which on PD is fairly easy, but not so easy on haemo.  Still, as Seven of Nine says in Star Trek, "We willl adapt!!!"

BTW, incase anyone's wondering about my nic, yes, we do keep snakes as pets and my favourite snake is a Royal Python (called Ball Pythons in the USA) ;D
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Alports Syndrome - A Rare Breed Indeed!!!
Joe Paul
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« Reply #1 on: August 20, 2006, 09:51:21 AM »

Welcome Python, glad to have you.
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« Reply #2 on: August 20, 2006, 09:58:21 AM »

Welcome Python, glad you found our site.  Tell your son to join too, there are young people on here as well.  There is also a game room at www.dialysischat.com go to the Arcade spot.  Yes, hemo is worse than PD.  Hope you enjoy the side.  Please go to "General Discussion" and read the rules and regulations.  Thank you for joining.
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« Reply #3 on: August 20, 2006, 10:00:19 AM »

Welcome to our website!  This is the place for anyone with any connection to renal challenges.  We have some other moms here with sons on dialysis, so you will have lots to chat about.  As you can see, we already have over 12 000 posts (and we only started a year ago) so you have a lot to read.  Choose those things that catch your eye, read, and give your own take.  Answer some questions, and ask some of your own.  If you like games, we have an arcade.  In the Off-Topic section you can talk about anything under the sun (and these guys do!!)  I am looking forward to hearing more from you.
When I first saw the name Python, I remembered that when I was first into dialysis and they were discussing fistulas, someone spoke about a man who had a fistula on his arm that looked like a python.  I was wondering if it was he posting on our site! ;D
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« Reply #4 on: August 20, 2006, 11:16:06 AM »

Welcome Python.
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anja
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« Reply #5 on: August 20, 2006, 10:15:35 PM »

Welcome Python and Son,
   So happy that you found this site, it has been a great help to me.  I was also diagnosed with Alport's Syndrome and am presently on PD and my father is on haemo.  Welcome , we'll enjoy hearing more from you.
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« Reply #6 on: August 21, 2006, 12:59:41 AM »

Welcome Python,

This is a great place to be, pull up a chair and make yourself comfortable! Hope you benefit from being here as much as I have.

 ;)
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Bobby the Python

« Reply #7 on: August 21, 2006, 06:03:54 AM »

Thanks everyone.  Love this site already ;D
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Alports Syndrome - A Rare Breed Indeed!!!
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« Reply #8 on: August 21, 2006, 09:26:28 AM »

Hey Python, I about your son's age (20) and Alport's is what caused my kidney failure too...Does your son suffer from any hearing or vision loss? I know that Alport's can have that effect on some people. I guess I'm lucky, and only got the kidney failure part!  ;D
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Python
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Bobby the Python

« Reply #9 on: August 21, 2006, 11:38:16 AM »

Hi Hyperlite.  Ian is partially deaf (quite bad) and wears hearing aids.  He is also very short-sighted.  On the other hand I've good hearing but am very long-sighted and have a little hematuria but nothing to write home about as they say.  I could go on to ESRD myself in the future like my grandmother did, but I'll worry about that if it happens.  In the meantime, I'm very healthy.  It seems to affect people in different ways, like my mum didn't have kidney problems but was deaf in one ear and as she grew older, the hearing in her other ear deteriorated too.  My left ear has better hearing than my right but I can still hear a pin drop a mile away.

I'll get Ian to join the forum when he comes home and he can talk to you.  It's really good to meet other people with the same problem and the same age as my son ;D
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Alports Syndrome - A Rare Breed Indeed!!!
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« Reply #10 on: August 21, 2006, 03:32:33 PM »

I'm also the mother of a dialysis pt. My son was 19 when he went on dialysis (always on hemo) so I can relate. I have PKD and my kidneys have not failed but I face the prospect...so that is also something we have in common. Looking forward to hearing more from you.

Does your son know ASL? I sign so I was just curious...

Welcome :D

Mom 3
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Bobby the Python

« Reply #11 on: August 21, 2006, 05:14:15 PM »

Hi Mom3.  We are in the UK so we use BSL here (British Sign Language).  My son doesn't need to sign as he can hear with hearing aids fairly well.  Like most teenagers he seems to have "selective hearing" LOL.  I know a bit of BSL but not much.  I used to be a taxi driver and had a couple of deaf regular passengers.  One was a good lip reader the other only signed.  I find BSL is a bit cumbersome compared to ASL.  Got a film called "Children of a Lesser God" and noticed that where BSL uses two hands, ASL uses mainly one hand.  I'd like to learn both BSL and ASL eventually but places on courses for BSL tend to go quick.  My son's hearing may stay the same as it is now or it could deteriorate so I've been trying to persuade him to learn BSL just incase.  It's useful to know anyway.  In fact, I think it should be taught as standard in all schools.  Maybe one day it will happen then hearing and deaf kids would integrate more.
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Alports Syndrome - A Rare Breed Indeed!!!
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« Reply #12 on: August 21, 2006, 09:05:19 PM »

So if you travel on a plane is it...Python On A PLane!   Oh NO!  Another aircraft movie!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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Bobby the Python

« Reply #13 on: August 22, 2006, 06:00:39 AM »

Yesssssssss.  You could sssssssssay that LOL.

I don't like that film and won't watch it.  Poor snakes get a bad enough press as it is, always portrayed as being nasty, horrible, slimy, dangerous things when they're the exact opposite.  Snakes only kill to eat.  I have 14 snakes, including two Royal Pythons (known as Ball Pythons in the USA), 3 Boa Constrictors, one of which is just a baby, the other two the snake equivalent of teenagers and other snakes too.  They are all very gentle animals.  So gentle, I hand feed most of them and have never been bitten apart from when they were tiny as they see anything bigger than them as predators that are going to eat them so will strike as a defence until they get used to being handled and learn they are not on the menu. 

Snakes make great pets for people with allergies to fur, although I will say, if anyone is thinking on getting a snake, learn about them first.  There are many good snake sites and forums on the Net with many experienced keepers.  Mine of good information - better than books which most are outdated and a waste of money ;D

I have two rescued snakes - one a Royal Python who nearly died because of neglect from his previous owners.  A Christmas present that got forgotten about I think.  He's fine now, a little shy but a beautiful snake.  The other is a gorgeous Cornsnake with the colours of orange, lemon and white.  He was sold for £10 beer money >:D  He'd been badly burned at some point and has some nasty scarring down one side, especially beside his neck.  He's very friendly and likes being handled despite this.  When I rescued him the filth he was living in was unbelievable.  Poor think didn't even have any drinking water :(  He's doing fine now ;D

I've seen a couple of trailers for that film and it is so stupid because all the snakes they use are non-venomous.  There are certain people who will now see the likes of a Python, Boa Constrictor or the sweet and friendly little Conrsnakes and run screaming in the opposite direction thinking it's venomous.  I just think films like that are so irresponsible >:D

That's my rant for today.  As you can guess we're snake lovers.  Ian has several Cornsnakes too and the baby Boa is his.  Gives him an interest.  He loves his snakes and often walks around the house with Kai his oldest Cornsnake draped over him.  She's coming up for 5ft long and will grow to around 6 or 7ft ;D
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Alports Syndrome - A Rare Breed Indeed!!!
kitkatz
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« Reply #14 on: August 22, 2006, 06:22:35 AM »

LOL back at you.  Good to know you like snakes.  I am afraid of snakes.  I almost stepped on a 3 and a half foot long rattlesnake in Garner Valley, CA one afternoon.  I must have jumped three feet when I saw the snake,. It was crawling along.  Needless to say I left it alone.

But I have had friends who like them and have them as pets..
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Python
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Bobby the Python

« Reply #15 on: August 22, 2006, 06:59:21 AM »

LOL.  Wonder who got the biggest scare - you or the Rattler ;D 

The only venomous snake we have over here is the Adder.  A few Christmases ago, someone bought a real Christmas Tree from the local Forestry Commission at Savernake Forest - well known because it has a high population of resident adders.  Well, they took their tree home, was decorating it when...out fell 3 baby Adders.  They'd woken up from their hibernation with the heat of the house.  The RSPCA were called and took the little snakes back to the forest and released them there.  The family in question certainly bought more than they bargained for LOL.
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Alports Syndrome - A Rare Breed Indeed!!!
MattyBoy100
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« Reply #16 on: August 24, 2006, 09:25:50 AM »

Hello Python!

welcome to our little group, there`s lots of friendly people and plenty of advice on this site.  Don`t fancy keeping snakes as pets though!!  Anyway, I read in another thread that you smoke!!!  I quit after I found out about my Alports.  I`ve got over the craving but sometimes I get the urge.  So far I haven`t succumbed yet but I know I will one day.  Hope Ian is ok and chat soon.

Matty.
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SCOTLAND NO.1
Python
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Bobby the Python

« Reply #17 on: August 24, 2006, 04:42:30 PM »

Ian's home from hospital.  He's a bit tired but glad to be home.  I do smoke - it's something I enjoy.  Don't drink a lot though.  Can't be bothered with it.  Love drinking coffee and can go through 3 jugs of coffee in one day.  I'm the only one in our house who drinks coffee.  Graham and Ian are Tea Jennies.
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Alports Syndrome - A Rare Breed Indeed!!!
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