suggestion... how about introducing ourselves??

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Postby msdiva » Mon Apr 26, 2004 1:02 pm

Hi my name is Marie, I am a Military wife whose is stationed in New Jersey. I have a 11 year old daughter and have been married for 15 years. I have just found out my kidneys have failed so im about to go through all the things everybody else has gone through. Whatever the case im glad i found a place to vent some. Thanks!
msdiva
 
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Location: New Jersey

Hi everyone! Beautiful Board!!

Postby LuLu2004 » Mon Apr 26, 2004 5:07 pm

Hi everyone, it's me, LuLu!!! So glad to see all the familiar names. I'm 41 years young and will be celebrating my 1 year transplant anniversary in a few weeks!! :D I was diagnosed with SLE (Lupus) - sound familiar Dionne? :wink: - in 20 years ago but have lived a very active life with a few lupus-related setbacks here and there. I have worked most of my adult life in law enforcement and as a fitness professional, educator, personal trainer and health club administrator. Most people who've known me would never have believed I was living with a disease like lupus, but even with the setbacks, I've always been able to rebound from whatever lupus threw my way. In the fall of 2001 I received the unfortunate news that lupus had affected my kidneys and they would eventually fail completely. At that time I began researching treatment options and immediately knew that a transplant would be the route I wanted to go so I could return to my active lifestyle. In March 2003 I had to begin dialysis. My husband was tested as a possible live donor and we were ecstatic to find out that he was a match! 5 weeks later I was transplanted!

I feel great, am working, exercising and trying to get in the best shape of my life because I will be competing in the 2004 US Transplant Games in July! Wish me luck!
There are no guarantees in life, and life is what you make it. Live each day like its a precious gift from God and you will have few or no regrets.
LuLu2004
 
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Joined: Mon Apr 26, 2004 4:52 pm

Bill

Postby Bill » Mon Apr 26, 2004 10:20 pm

Hi I’m Bill. I live in the beautiful state of Maryland USA but grew up in New Jersey. Diagnosed with Medulary Cystic Disease at a very early age, along with all my siblings. Started dialysis at age 12, transplant at age 13, now 44. Will be celebrating 31 years May 12, 2004. Not as exciting at 30 but important all the same. I received my kidney from my uncle.

I have not been the hospital since I walked out in 1973 with my transplant. I have basically lived my whole life with a transplant, with very few problems. I’m an engineer, married (20 years) and have one child, a son 12 years old.



Bill
Bill
 
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Joined: Mon Apr 26, 2004 9:52 pm
Location: Maryland, USA

my introduction

Postby Yvette » Tue Apr 27, 2004 7:36 pm

Aloha Everybody, my name is Yvette and I am 32yo living w/ membrano proliferative glomerulonephritis for 22 years now. Just recently celebrated my 10 year transplant anniversary. Unfortunately it is not working as well as it used to. I am currently undergoing tests to try for another transplant this year from my sister. (First one was cadaveric) We are hopeful!
I am not currently on diaysis...even though the doc would rather I was. I am married to a US Marine and have 2 boys-14 & 11. We are stationed in Hawaii (yes, it is beautiful) but we miss Texas...our homestate. I try to read up on these posts, because I learn more all the time with all your help! I have had this kidney disease for many years yet I always learn something new. Its great to know that there are so many of us out there that are willing to help eachother. Every now and then some of you have answered my ?s. I don't post much, though. I'll most likely get on more now, I really do like this new board
Much Love and Aloha to all :wink:
"You think its tough to be a Marine; try being a Marine wife...with kidney disease!"
Yvette
 
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Location: Pearl City Hawaii (for now)

Postby gary in bc » Wed Apr 28, 2004 2:58 am

Hi
I'm Gary and I live in Campbell River, British Columbia, Canada. I'm 49, married, and still work full time, and sometimes more. I was diagnosed over 10 years ago with failing kidneys, and managed to keep well for about 8 of the 10. About 2 years ago I became esrd, and went down hill very quickly after that. I have been on PD for about a year now, and have now been diagnosed with primary malignant polythycemia. At this time I have a couple units of blood removed every couple of weeks, and if I can keep my hemoglobin down, (yes, down) I will be able to postpone chemo for a while. This disorder is apparently rare in kidney patients, so I do get exta attention from my neph team. I do have to admit, I do get the best of care from the team I have. All questions and problems dealt will promptly, and lots of emotional support through support groups. The social workers are very helpful, and have even gone so far as to arrange transportation for disabled people through car pooling to get to clinic.
gary
gary in bc
 
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Postby Kiwi Andy » Fri Apr 30, 2004 6:52 pm

Kia Ora ( hello ) from New Zealand. I'm Andy and care for my partner Jenny who had her transplant on February 2nd 2004. I think I''m 42 but the kids aren't up to correct me if I'm wrong and Jenny is about 41. (We don't get too concerned over ages in our house) We have two kids, Deanna 14yo and Sam 11yo. Jenny was diagnosed with renal problems about, oh, a hundred years ago. We were young at the time and too busy to bother about what was never going to happen to us. About six years ago, things got a little more serious and then all of a sudden, in late 2002, we were told dialysis was only a couple of months away. Facing this news, we took off to Aussie for a holiday and left Jenny's kidney failure back in NZ. Unfortunatley, the kidney problem and dialysis were waiting for us when we got back home. Jenny went on PD which didn't work out due to leakage of the PD fluid up to surround her lungs. Hemo was her only option and away we went. While training etc for home hemo, a sneaky friend Julie (now known as Jewel-ee) went and got tested to see if she was compatible. Neither me or my sister were compatible with Jenny. Julie dropped the offer of her kidney out of the blue and the rest is history. Jenny's transplant was one of "those" ones and wasn't exactly smooth sailing. In fact, it was what seemed a nightmare at the time. We're sailing along just nicely at the moment and this bulletin board and the support from it has been what has kept me going at times. I'd also have to thank Jim Beam as well. Prior to dialysis, we travelled a fair bit and we're starting to get confident enough to think of travelling next year so you never know, we may catch up with some of you. There is always a place to stay in NZ if any of you are ever over this way. One final thing, for a UK based bulletin board, this one sure has a mixed bunch of ratbags from all over the world which is really "kewl" as my daughter would say.
Kiwi Andy
 
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Joined: Mon Apr 26, 2004 1:14 am
Location: New Zealand

Hallo Hallo any students out there?

Postby eowyntoo » Mon May 10, 2004 6:45 am

Hi,

You all sound great. My name is Candida and I am 25 years old and a graduate student. I am originally from England but I am currently studying in the US. I love it here even if everyone studies all the time.
I was diagnosed when I was 17. I am not on dialysis but will be within a year. I am looking for a kidney donor. I thought I had one in my mother but she was just diagnosed with lung cancer two weeks ago. I don't really care about the kidney, I just want her to get better. :(
I like sports and used to figure skate all the time. In college I played ice hockey. Maybe not the best sport for someone with renal failure :) But I loved it. My favo(u)rite colo(u)r is pink and I would get pedicures every week if I could.
I was wondering if there were any college students out there who dont live with their parents/partner? And if there are just generally how they deal with dialysis and kidney problems whilst being surrounded by young healthy people.

Thanks! Take Care everybody!
eowyntoo
 
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Joined: Mon May 10, 2004 6:36 am

Introducing ones self

Postby suede » Mon May 10, 2004 8:05 pm

Hi Im Julie, Im from Essex, England. I was diagnosed with FSGS about 7 years ago and it has been fairly stable since then. Got married 5 months ago and am now thinking about babies. I think it will be too much of a risk and am thinking about adoption.

Its nice to see so many people in the same boat with kidney problems. Well not nice, but you know what i mean. Its great to hear about other peoples stories, especially the successes but also the bad times because it must be nice to talk to other people with similar problems. xx
suede
 
Posts: 2
Joined: Mon May 10, 2004 6:53 pm

Wow..I go away for a while and a whole new board!!!

Postby Ronnie Magnolia Springs » Tue May 11, 2004 1:47 am

Howdy everybody....

Ain't been around here in a spell. As you can quickly tell..I am from the Deep South in the U.S. If you get any more Southern than this you will get wet 8) 8) Special howdies to Cheryl, Rik, Amanda and all my old buddies. They helped me get to transplant last October. Like everyone else that gets a transplant...when you get feeling better you tend to get scarce around here.
I am now 53 years old. I know that is hard to believe because I type so darn young. My wife's name is LeeAnn and we have four boys still at home. We have other children that have already left and are reproducing at a startling rate. My son Jamie and his wife Pam just had a little girl last week. Jamie is the son that gave me a kidney. His daughter Jessie was in a bad accident in December of last year. She was left paralyzed from the waist down but has the right attitude and is doing well. She just got accepted to the Shriners Hospital in Philadelphia and will be leaving soon for a weeks evaluation. We hope they can get her to crutches at least.
Rik...bud :?: ...myself and Jamie being former body doubles for George Clooney...I was suprised to see that you now are preforming that duty. Are you playing the much older George? Jamie was doing his younger years and I was doing the part of the :wink: wiser, much better looking middle age George.
Hope everyone here is doing as well as they can be. I will be popping in more often.

Hugs to everyone... :wink:
Ronnie
Ronnie Magnolia Springs
 
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Location: Magnolia Springs, Alabama US

Postby Rik » Tue May 11, 2004 8:42 am

Great to see you have finally found what your fingers are for and signed up onto the new board buddy :0) and congrats on another wee lass to add to the Hyler Brood :D and glad your doing OK mate ...

just because your better doesnt mean we dont appreciate your experience and knowledge of kidney failure young(ish) Ronnie ... we were always told as kids we should respect and look up to our elders ... well at your height mate looking up to you is kinda difficult looking up to you unless your at the top of some stairs .... but I reckon after all you have been through you deserve some respect :lol:

I'm real pleased that Jessie is fighting her way through her injurys ... a REAL Hyler me thinks :wink: please send the lady my regards wont you :0)

so .... Jamie plays Mr Clooney before he was good looking and famous ... YOU play him in his wilderness years after the studios drop him for someone younger and more rugged ... hmm?? ... gee ... I geuss that leaves me with the bit in the middle eh!!!!!
:mrgreen: :mrgreen: :mrgreen: :mrgreen:
Rik
 
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Location: West London - UK

Old Borris introduces himself

Postby oldborris » Tue May 11, 2004 4:17 pm

I was born, it is widely supposed. At any rate, no alternative explanation has been offered for my sudden appearance on this planet in that otherwise unmomentous year of 1925.

The place of my birth was one of those pretty whitewashed thatched-roof Irish country cottages that are so appealing to tourists and appear on so many postcards. Mine was saved from such a fate on account of having to be protected from imminent collapse by a large beam propping up one end. Hens pecked up stray bits of grain from the earth floor, and the pig food was kept in a large wooden bin which, with the lid down, and covered with tasteful bits of newspaper, doubled up as a breakfast and dinner table. In one corner was a fireplace under whose covering chimney was a wheel which activated an under-floor bellows which kept the turf fire alight when there was turf and when there was none dried cowpats supplied the deficiency.

The toilet facilities were impressive in their simplicity - full of light and warmth in the summer and of rain, snow, hail and wind in the winter situated in a rough patch of ground, called the haggard, behind the cabin. It was plentifully supplied with living, growing toilet 'paper', large double-quilted velvety dock leaves which sometimes hid bunches of nettles which one might, when in a hurry, grab together with the docks. To apply these to one's backside, however inadvertantly, was a sure sign of an early Spring.

The midwife, handing me to my mother, whispered that I was “wizened, wrinkled, bald, red-faced and had the appearance of a heavy drinker”. I distinctly heard this, tho not intended for my youthful ears [it was before the 9 o’clock watershed] and I was so shocked that I swore, there and then, that I wouldn’t touch a drop again. Naturally, I didn’t keep that promise and, naturally, you wouldn’t expect me to since I was far too young to know what I was promising. My mother was, apparently, even more shocked for, on seeing me for the first, and as it turned out, the last time, she turned over in the natal bed and died. My father, now saddled with a newborn motherless baby, if that is what I was, [there have been alternative suggestions] promptly packed me off to a Dublin orphanage, the sweetly-named Home for Little Children.

Seven years later I was rescued from the home by an elderly cousin and, at the age of 7, introduced to the delights of an Education, which I celebrated by kicking the teacher in an legitimate response to her trying to cane me for being cheeky to her, and was, inexplicably, sent home, not as the hero I knew I was, but in disgrace. Was ever a child treated so badly?. Six years later, having learned everything that there was to be learned in an Irish village school, I quitted Education, that event being celebrated by a box on the ear [the left one; it still tingles] from an irritated visiting parson to whom I had been cheeky and the injunction never to return to the village school again, an order which I was only too happy to obey.

Unencumbered at 13 with any further education I entered the World of Business [extracting nails from wooden egg boxes] and was sacked after a week as being incompetent. The truth is that after six years of learning reading, riting and rithmetic, I was too highly qualified for that job. In my next job, that of office boy to a firm of solicitors, I augmented my meagre salary of five shillings a week [25 pence in today’s money and, I think, about 16 cents in US money] by liberating books from one Dublin bookshop and selling them to another in the same street. I thought then that I was nicking them and it was only years later that I learned, to my great relief and as an enormous salve to my latent conscience, that I was, in reality, merely liberating them.

I only 'stole' the books I wanted to read before selling them and the very first book that I so liberated was the autobiography of Sean O’Casey in which he related that he had stolen his very first book from the very same bookshop – what a thrill to discover that I had, at least, that much in common with my childhood hero – and that started him on his dramatic career. It only got me as far as unsuccessful eggbox nail extraction and eventual renal failure, but what the hell! If ever you’re in Dublin and The Abbey is staging an O’Casey revival, don’t miss the iconic Shadow of a Gunman, Plough and the Stars and Juno and the Paycock altho’ you are unlikely to witness, as did the first audiences, solid Dublin citizens lining the stage to prevent a holy Irish Catholic audience from seeing an Irish actress playing the part of – who ever heard of such a thing – a prostitute!] But what else could one expect from a Protestant playwright?

The bookshop where I sold on the books was, you will be delighted to learn, the very same one to which Bob Geldorf sold his Blackrock College textbooks before each term started. Both bookshops were overshadowed by the venerable walls of the Queen Elizabeth 1 founded Trinity College where Bishop Berkeley noted that the famous tree in the quad was not there when he was not in a position to see it [I’m still trying to work that one out], where is kept the richly illustrated Book of Kells and through which I passed for the ensuing four years on a bike on my way to work. It was a great shortcut.

That way to work led eventually to England, having been virtually deported from Ireland for being cheeky to an office worker - and that was before p.c. so I must have been very, very cheeky indeed [I was!]. I had first visited England a year earlier for the Coronation of HM The Queen and returned to Ireland with pleurisy from camping all night in the rain in Hyde Park to secure a good position [just under the flower, flag and banner bedecked window of the Dorchester from which Noel Coward and a companion watched the mile-long procession which included the enormously fat Queen of Tonga [a country which had only recently rid itself of a history of cannibalism] riding in an open carriage, to the great delight of the rain-spattered populace, with her very lean Prime Minister. “Who” asked Noel’s friend “is that very lean man riding with the Queen of Tonga”. “Why” remarked Noel nonchalantly, “that is her lunch”].

Having been totally captivated by the splendour of the Coronation and having sacrificed my health on the monarchical altar, I returned a few months later accepting an offer from a sympathjetic and, I think, secretly approving, boss of a place in an English branch of the company as an alternative to being sacked as a burnt offering to the harridan who had ratted on me.

Which is why, some 44 years later I lay on a hospital bed in Charing Cross Hospital, London [which is not in Charing Cross but in Fulham Palace Road, but this posting is too short to tell you why] having my blood washed in an oversized laundry machine. I now have a four-hour thrice-weekly period in which to reflect that if I had stayed in Ireland I would be enjoying much better dialysis facilities in Dublin where I would be offered a nice cooked breakfast or lunch during dialysis and a dialysis-dedicated doctor.

But, then, what would England – and the Queen – have done without me?
oldborris
 
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Location: Fulham, London, U.K.

quick note to Borris

Postby Cheryl in CT » Wed May 12, 2004 6:05 am

Borris, I haven't "spoken" with you before, but when you write things like this "intro", I find you perfectly delightful! (I will not comment on certain others of your postings...)
Nonetheless, I am hoping to have the opportunity to chat a bit with you one of these days. Your literary references often make me smile, and I have a feeling you're one tough "old goat"! I'd love to ghost-write your biography - and yes, that is a real offer! (send me a PM if that has any appeal...)
Thanks for the smiles.
Cheryl (CT/USA)
Cheryl in CT
 
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Postby JMan » Wed May 12, 2004 9:58 am

Old Borris..

you write with shades of the Milligan.. A delight to read..
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Image
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JMan
 
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Postby Jack » Wed May 12, 2004 6:38 pm

Heloo my name is Jack
i live on the lovely island of aruba
im 16 and i have been diagnosed with kidney failure in oktober
this is all new to me
im currently on capd and waiting for my apd machine to arive
==jack==
Jack
 
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Location: Aruba

good luck Jack ;)

Postby Elaine » Wed May 12, 2004 9:55 pm

Hiya read u post hope all goes well 4 u starting APD. :roll:
My Daughter Rachael is also 16 shes been on APD for 16mnths now and has coped much better than u first think. :wink:

Perhaps we can speak 2 u on CHAT site sometime there are a handful of young people teens like uself also people of all ages too. :lol: Or reply to us by post here.


Best wishes & good luck once again

Elaine & Rachael :roll:
Elaine
 
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