New member, hi!

[DeadAlive]

Hi guys i don't have anyone who i share this problem with, i thought i would come and have a chat to people in similar situations to myself.

In my case kidney failure was always going to be my future, i was born with a Alports syndrome. It usually leads to kidney failure by middle age, deafness and can cause eye problems .... its not recorded that its likely to turn you into a mental health patient too. It seems like my whole life has been based around hospital.

Left school at 16 yr old, went straight into full time work. Got my fork lift truck license as i thought id still be able to do that when i fell ill.
By the age of 21 things had changed and my kidneys were too bad, i was not feeling able to work and had developed severe sleeping problems at night.
I started dialysis 13 years ago (2001) Haemodialysis 3 times per week
After 7 years on the transplant list i finally got a donor from some poor person who suffered head injuries in a car crash (2008)
I was in hospital for 2 months after the transplant, it took a long time to even work, the wait was horrible but once it started working i was very happy.
Started attempting to put my life together somewhat normal .....
Transplant was rejected around 4 years later (2012)
..... re started dialysis in 2012 but only because i was sectioned under the mental health act
Got un sectioned a couple of week later when i had changed my mind and agreed to live

I'm currently down on a list to do home training so i can dialise at home. Trying to get some freedom and reason to my life.

I abuse speed and adrenaline to give me some good times and thrills. I raced a 180 mph motorbike round the UK's racetrack for 4 years whilst i was on dialysis 3 times a week .... won a championship too haha.
I stopped racing after my transplant arrived, i didnt want to damage it .... it failed anyway.
....... now after 2 years back on dialysis i feel the need to start racing again.

I guess i'll shut up now

Hi and best wishes to you all,
from Jay.

[Joe]

Hi there Jay, and welcome to IHD! Hope you have a good stay here and that we can answer your questions.

[Ninanna]

Hi Jay and welcome to the site. I'm so glad you found us!

[DeadAlive]

Thanks for the welcome guys.

[Darthvadar]

Hi Jay....

What a story... Racing, eh???.... I can see you'll be a live wire around here!...

  to IHD.... Post often... I'm sure you'll be offering as much support as you receive...

Darth, Moderator...

[DeadAlive]

Hi Jay....

What a story... Racing, eh???.... I can see you'll be a live wire around here!...

  to IHD.... Post often... I'm sure you'll be offering as much support as you receive...

Darth, Moderator...

Haha, hello there ..... yes racing!!, i feel like my life is empty without racing. Racing gives me goals (realistic ones) and a massive sense of acheivement when i win. On track when im racing the adrenaline takes over, my body fills with adrenaline and for the next few laps ...... its like im not even ill, kidney failure is as good as not existing when im in a race ... i don't feel ill or ever think about my illness when im full of adrenaline.

Its not been easy, wearing a full leather racing suit in the middle of summer whilst racing round the most physically demanding track in the UK takes its toll (on anyone, nevermind a dilaysis patient) ..... a day like this would have me sweating like 3 litres of fluid out over a few races.

During my 4 years racing on dialysis i fell off many times (crashing happens at competative level) .... i broke a few things like my collarbone snapped clean, i fractured a wrist a couple of times, cracked a couple of ribs, fractured ancle, many many sprains and bruised up body parts inside and outside. My fastest ever crash was coming off at over 100 MPH, lucky i was not injured by that 1 .. not even a scratch, the bike was a mess though. The benefits still outweighed the negatives.

Im considering racing 4 wheels this time for some added safetey .... it would be nice to race without so many broken bones.

Im not the sort of person who likes being told "you can't do this" ..... i go out of my way to prove people wrong, or take it as a challenge at least.

"They" told me i couldn't have a tattoo after transplant ..... so i went and got a 55 hour one totally covering my left arm. Before the tattoo i hated my left arm (due to fistula) ... now when i look at my arm i see amazing art work. Another case of the benfit far outweighing the negative .... thats why i did it.

[Bambino_Bear]

  Jay!

[Gerald Lively]

Well Dude, while I do not have Alport Syndrome, I had renal failure, lost my hearing for the most part and am suffering from end stage macular degeneration.  I gave up my Harleys, which I always kept upright.  Seems to sound similar.
Setting goals is the way to live.  If you don't dialysis will turn into drudgery.  Goals may mean you will have to do something entirely different from your life experience.  In my case I wrote a book then took up painting.  When my kidneys reawakened, I still paint.  Not easy with near blindness and being colorblind. 
They let me stay here for the purpose of keeping things stirred up.  So, I stir.

[kristina]

Hello DeadAlive and welcome to IHD.
I don't know much about motorbike racing as such, only a little bit about Barry Sheene  ...
... a friend of mine had a very heavy pre-war motorbike, which I sometimes borrowed to go off on my own...
... I loved the speed and it was great fun, especially at times when the streets were almost empty...
... the funny thing was that the motorbike was so heavy that I was unable to turn it around and could not really drive to the right or left...,
so, when I drove it for the first time (when I was 15), I was only able to drive straight on with no turning...
... at one point I drove straight through a farmers yard with all the hen running around wild...
... I also knew a little about formula one racing ... and I kept my fingers crossed for Nigel Mansell,
but with all the strange incidents and his running out of petrol one minute before finishing the race,
watching  formula one became a little repetitive and boring ... it also seemed to me as if there was a bit of foul play taking place...
... especially when "Schumi's" special tyres enabled him to speed along that little faster,
which again did not seem "fair play"... and that brings me to his strange accident
and the question whether or not it was really an accident?

Best wishes form Kristina.

[Jean]

Well for heavens sakes, you really are active. I commend you for having your arm tat done. That is one good way to cover it up. But, at any rate, we are glad you found us and     to IHD.

[DeadAlive]

Thanks for the great welcome guys!!!

Gerald you got it spot on there, im like that too.  Funny you say you wrote a book and started painting. About 2 month ago 1 random day i went to an art suppliers and went crazy, i purschased an easle, acrylic paints, plenty of canvas, brushes ... the lot. i have not painted for around 18 years but it felt like time to re start.

I got set up at home and got artists block .... sat there for around 3 hours staring at a blank canvas wondering what to paint. It seemed like i wasnt going to paint anything so i just forced the brush to canvas to see where  it led.

There is only 1 thing i like as much as motorbikes/cars, maybe more ...... i can still do this whilst im ill and it does have big future potential. Im way above average skill in this too (obviously) ..... poker!! I LOVE POKER!! I play a lot of poker. Im looking for a big win someday. Im often in positions that make it a possibility. I have played in tournaments where first place has been a cool $1.2 million dollars.


Thanks for the cool and fun motorbike stories  gave me a chuckle!

I can post a pic of what i have done to my left arm if you are interested?

[kristina]

Hello DeadAlive,

I am glad that my first motorbike experience made you chuckle...
Mind you, it was not very funny for me at the time because I originally thought I would "give it a try" round the block
but I came back after about one hour, because the motorbike was much too heavy for me to turn to the right or left
and in order to find a way back whilst driving straight on took about one hour... and I was ever so glad (and releaved) when I was able to return...

I still like many of the pre-war motorbikes very much, because they are so beautiful to drive
and their sound is very "sonorous" and re-assuring in their deep sound,
whereas many modern motorbikes these days may sound a little hysterical, shrill and demonstrative sometimes...

Best wishes from Kristina.

[Gerald Lively]

I just finished painting the Moon and Earthrise from a perspective of an orbiting entity.  The Moon occupies about three-quarters of the picture.
I'm in the middle of painting an oil refinery that is busy polluting the atmosphere.  I'm kind of stuck about what to put in the foreground.
For me my Harleys were all about meditation.  Riding alone up the Feather River Canyon and back (140 miles)  gave me time to think, resolve and plan.

[DeadAlive]

Kristina is sounds like you had a hard time with the bike ... i do find it funny!. I have a problem in my dreams where i can't turn a bike, all i can do is go straight in my dreams .... its weird.

Gerald, it sound like you have done some nice art work, its very relaxing i noticed.


Side note ...... For the last 2 years i have had to drive over 50 miles 3 times a week for dialysis. Tomorrow i start at a new unit thats just opened closer to my home. Its not run by the NHS, its run by the company that manufactures the dialysis machines. Hopefully it will be better quality of care than the NHS units i have been on previous.

This will be my 6th different dialysis unit in 10 years of dialysis.

... i wonder if the nurses are allowed to date patients at this one 

[DeadAlive]

I've done 2 sessions at my new dialysis unit. Its run by the company that makes the machines, fresenius or something.

Its the first time in 10 years of dialysis that we have internet access ..... this is great as i can waste time no problem on the net.

I can finally play poker whilst im on dialysis, awesome!

[Poppylicious]

I can post a pic of what i have done to my left arm if you are interested?

Yes please.  I do like a man with tattoos. 

Welcome to the site Jay.  I'm a UK-er too (East of England), but it's my Blokey who was on haemoD (he had a transplant in 2011).

I've done 2 sessions at my new dialysis unit. Its run by the company that makes the machines, fresenius or something.

Do you have to pay/have private insurance, or is it still funded by the NHS? Blokey was lucky in that he always had wi-fi at his Hospital unit; he would have gone bonkers without it!

Poppylicious, Moderator

[PrimeTimer]

  Welcome, Jay! Saying Happy Birthday to you because it sounds like you are being reborn and starting a new life! A person like you will probably love doing home hemo because you will be the one who gets to decide when/where to do your treatments, so long as you stick to your docs treatment plan. My husband does home-hemo and I am his care partner. We use the NxStage System One Cycler and their Pureflow machine to make his batches of dialysate. It is a lot of work but...he feels well enough to keep a full time job and is getting good labs. I do the setup/cleanup and maintain the supply inventory, etc. We live in a small apartment so barely have enough room for it all and I've had to get creative so the place doesn't look entirely like a medical clinic but we do okay with it. All depends on one's ability or lifestyle...some would rather go in-center (hospital) and not have to deal with setup/cleanup, others want to do it at home. And heck, some people want to do it on the go so take their cycler on the road!

Good luck to you! And again, Happy Birthday! 

[dialysisuser82]

« Il faut oublier les folies d'un jour pour faire place à celles du lendemain. »
  -David Hume

« La folie, c'est se comporter de la même manière et s'attendre à un résultat différent. »
  -Albert Einstein

[DeadAlive]

I can post a pic of what i have done to my left arm if you are interested?

Yes please.  I do like a man with tattoos. 

Welcome to the site Jay.  I'm a UK-er too (East of England), but it's my Blokey who was on haemoD (he had a transplant in 2011).

I've done 2 sessions at my new dialysis unit. Its run by the company that makes the machines, fresenius or something.

Do you have to pay/have private insurance, or is it still funded by the NHS? Blokey was lucky in that he always had wi-fi at his Hospital unit; he would have gone bonkers without it!

Poppylicious, Moderator

Hi Poppy, i will post a couple of tattoo pics shortly

No the Fresenius dialysis unit is still funded by the taxpayer ... same as the NHS. If i had to pay for my own treatment i'd be dead now.

[DeadAlive]

Welcome, Jay! Saying Happy Birthday to you because it sounds like you are being reborn and starting a new life! A person like you will probably love doing home hemo because you will be the one who gets to decide when/where to do your treatments, so long as you stick to your docs treatment plan. My husband does home-hemo and I am his care partner. We use the NxStage System One Cycler and their Pureflow machine to make his batches of dialysate. It is a lot of work but...he feels well enough to keep a full time job and is getting good labs. I do the setup/cleanup and maintain the supply inventory, etc. We live in a small apartment so barely have enough room for it all and I've had to get creative so the place doesn't look entirely like a medical clinic but we do okay with it. All depends on one's ability or lifestyle...some would rather go in-center (hospital) and not have to deal with setup/cleanup, others want to do it at home. And heck, some people want to do it on the go so take their cycler on the road!

Good luck to you! And again, Happy Birthday! 

Thanks for the welcome bud. I have to say it doesn't feel like my birthday .... im rather ill atm constant headaches and migrains, this morning included i had my head over the toilet being sick.

Your husband obviously has better docs than me .... keeping to docs treatment plan is not ideal. My docs are useless.

After 10 years of dialising myself im clever enough to know how to adjust my treatment to suit.

I would be mad to put all my trust in doctors and not question their actions. They often make the wrong choices in my dialysis treatment .... 1 of their current wrong decissions is the reason iv'e got super high blood pressure and had migrains and headaches for the last 4 week.


i wish your husband all the best with his transplant ... i had 1 back in 2008 .... i won't be having another, it was brutal ... an awfull experience that was not worth the hasstle. 4 years on dialysis would of been easier than the transplant i had.

[DeadAlive]

« Il faut oublier les folies d'un jour pour faire place à celles du lendemain. »
  -David Hume

« La folie, c'est se comporter de la même manière et s'attendre à un résultat différent. »
  -Albert Einstein

French was never my strong point .... neither was opening new tabs to search for a language converter to see what you quoted. English would be more suited to this thread mate.

[DeadAlive]

Here is what i did to stop myself hating my fistula arm .....

[DeadAlive]

Here are a few pics of me racing ...... i was a dialysis patient during all these races. Its possible racing kept me alive through some rough times.





Ooooops, where did my bike go!

[PrimeTimer]

DeadAlive:

AWESOME!!  HA HA!! You are a REBEL!! Years ago when I was the one who was ill, I use to tell people that sometimes my only source of "energy" was actually my anger. Anger isn't always necessarily a negative thing if you know how to use it in a positive way. Let me explain...there were things I needed and wanted to do and I would be so sick and in pain that I learned that if I took one deep breath and grunted enough and got mad enough, I could get things done. The pics of your tats and racing makes me think that you are a warrior refusing to take things lying down...altho no one would blame you if you did. 

My husband is not wanting a transplant right now but he does want water..

[dialysisuser82]

Ah, mon pauvre ami !