suggestion... how about introducing ourselves??

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

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Postby MANCHESTER STEVE » Fri Aug 12, 2005 12:27 pm

Hi Faye :lol:
We have met at Jims Party. just to let you know that on these boards their is no such thing as a silly question. We are all here to support each other
Steve
Live life. Love life. Donate to give life

www.kidney.org.uk/ypg
MANCHESTER STEVE
 
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Postby Lisa-B » Sat Aug 13, 2005 12:42 pm

Hi, I am Lisa from Australia. I am here on behalf of my husband Alan who has recently (early May) been diagnosed with Pauci Immune Crescentic GN which is Focal & segmental and he has less than 80% kidney funtion. This has turned our lives upside down and certainly created a problem with us being self-employed...but thats another story.
Alan turned 50 in early March, I am heading for 44 next month and we have a delightful if stubborn son called Cameron who turned 5 in June.

In Jan/Feb Alan began getting our firewood together for this winter. Hot work and he was drinking heaps and sweating profusely and I commented that his urine was rather too dark and frothy, plus he was totally knackered all the time. In early April I finally got him to see a doctor fearing that he may have diabetes. Silly doctor didn't listen very well to the symptoms but he did say he had high BP and took blood tests which showed he was aneamic. Come back in another week he said after giving another form for more blood tests. He asked me to moniter his BP..didn't say if it got too high what to do and still didn't do a urine test.
That was Thursday...on the Friday Alan worked and i took his bp at lunchtime it was way high 190/102 or something silly like that. In the wee hours he didn't tell me he had chest pain though i did notice that evening he was having trouble breathing...off to the nephews footy game we went next morning after a false alarm at 9am when Alan said "I think you better call the ambulance...oh no don't worry I'm going for a walk...this is the worst I have felt!!!" Anyway at 11 I decided to take him to the hospital anyway....they whipped him straight in and within the first 15 minutes said he had kidney problems. Whew..so 4 days in ICU and then transferred to bigger city hospital for biopsy, and early May we got the dreaded results.
I have not come across anyone here with same disease. Alan is so fatigued but still struggles with a few small jobs on his better days. Our nephrologist, Rob has been treating the disease quite aggresively so hopefully Alan will feel more well in time. He is on Cycloblastin x 100mg and down to 50mg prednisolone daily, plus numerous BP meds.
We have been told that this is not reversible and I am keen to try to do all i can through diet to prolong what kidney function is left.

I am very very pleased to have been able to talk with some of you already and really appreciate the information you have given me.

What a courageous lot you all are too!!!

Looking forward to meeting more of you...Lisa
Lisa-B
 
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Postby LindaE » Sat Aug 13, 2005 4:00 pm

Hi Everyone,

I'm Linda from Missouri, USA. Diagnosed ESRD 3 yrs ago, hemo 2 years, transplanted 7/28/05 from 20 year old "savior". Am 55 yrs young, married, 25 yr old daughter who is a medic and constantly on my case to behave. Known on line as "wildrabb", (high school nickname) :twisted:
"Nothing Is Impossible"
LindaE
LindaE
 
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Postby rosa t » Sun Aug 21, 2005 4:55 pm

Hi everyone

Just having a 'play' and realised I've never introduced myself!

Well I'm 43 and have had kidney problems for 2 and a bit years. They (dr's) have now changed their mind about what's wrong from minimal change disease with nephrotic syndrome and renal failure to
FSGS with nephrotic and renal failure.

My kindey finction holding at around 20-25% I lost most of it in 2004 while using cyclosporine to try and stop the protein leak.

I have a kitchen cupboard full of medication as do many of us!

I'm back on immunos again this time MMF/Cellcept started 19/8 for a trial of 2 weeks to see how I cope with the side effects and if it makes any difference to the protein leak.

I'm married to a great person and without his unwavering support, 2004 particularly, I would not have been able to cope.

We have an 11 year old son so I work part time to fit in with school. I'm sure I would not have coped being a full-time worker and full-time mum!

But that aside I enjoy, not really the right word, reading messages on the board and participating in the chat room.

My memory and concentration span has deteriorated in the last few months, werll that's my excuse anyway!


This board and the chat room have been supportive in the wealth of knowledge and empathy when things get too much!

It's a whole different life living with renal probems as many of you know!

I haven't got a nice signature, sniff sniff, like many on the board I'll have to grab Rachel and bribe her somehow!


Rosa t
Yesterday is history, tomorrow is mystery, today is a gift, that's why they call it present
rosa t
 
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Postby Faye » Sun Aug 21, 2005 8:31 pm

MANCHESTER STEVE wrote:Hi Faye :lol:
We have met at Jims Party. just to let you know that on these boards their is no such thing as a silly question. We are all here to support each other
Steve


Hi Steve ... thought it was you :wink:

I'll be asking if there's anything I don't understand .. no worries there. Glad to hear that there's no such thing as a silly question too ... makes things a little easier.

Faye
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Faye
 
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Postby Risa » Mon Aug 22, 2005 12:13 pm

Hi,
My name is Risa. I am a 39 yo working mom of 2, with a very supportive hubby. Only recently discovered this site and have found it to be the most informative and supportive yet. I was diagnosed with membranoproliferative glomerulonephritis type 1 (MPGN1) after biopsy during my 2nd trimester of pregnancy 3/03. Ended 18 months of pred. tx 5/05. So glad to find a site where I've found adults with the same diagnosis. Aside from blood pressure issues, I've apparently reached remission. Scouring these boards have certainly educated me and I still have much to learn. Look forward to reading all your interesting posts!
Risa
 
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Location: Northeast,USA

Rik's clever suggestion !!!!!

Postby Angie » Wed Aug 24, 2005 8:43 pm

Oh I feel SOoooooooooo ashamed I have just realised that I havent been in and said hello here.....
Sorry

My name is Angie and I first visited the KPG when someone very close told me that they had Renal failure, they have since had a transplant and are doing very well.

I would like to take a moment to thank everyone for all of their help and support over the years..... you are all WONDERFUL and I feel a richer person for knowing you all.....

Thank you

XXXXXX :P
ImageImage
Life is for living-Grab every moment with both hands
Angie
 
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Postby Adam » Thu Aug 25, 2005 9:21 pm

Hello,

My name is Adam and I'm a male in my early thirties.

I was diagnosed with IgA nephropathy in January 2004, via biopsy, after complaining of fatigue and swollen feet/legs and presenting with gross proteinuria. Looking back, I would say I first felt these symptoms back in late 2001/early 2002 (they were intermittent in the beginning).

My kidneys failed in April 2005 and I started dialysis as an emergency patient via a tunnelled neck line. Started PD in May 2005, and now after some tweaking of the dialysis prescription I'm beginning to feel more energetic. Well, as energetic as I've felt over the past few years...

I've gone through the tests for joining the transplant list and just need to visit the dentist to get the oral okay before going on the list.

Adam
Adam
 
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Hiya an intrroduction.........

Postby mal morrison » Sat Aug 27, 2005 11:26 am

Hiya all,

My name is Malcolm {mal} I am 39 years old an live in Inverness Scotland.

I have been on Hemodialysis for two and a half years . I moved back p to Inverness from Ledbury Hereford about 1 year ago to get family support.

Take care everyone and keep posting.........
mal morrison
 
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Postby Andy » Sun Sep 04, 2005 12:34 pm

Sorry I've missed all u newbies.

Welcome to you all. I hope you find the answeers that would want here and the support is always there if ever you should need it.

Love
Andy
x x x
We are the way we are, if we werent, I wouldnt be me and you wouldnt be you!

www.lltgl.org.uk
Andy
 
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Postby Paladin » Tue Sep 13, 2005 10:27 am

Hi all,

My name is Paul, and I am 28 years old and live at the southernmost edge of Africa.

I have been on dialysis for about two years, after being diagnosed with glomerular nephritis, the cause of which is unknown. I am due to have a transplant any day now (have not got a definite date), my wonderful mom being the donor. I am scared, excited, impatient, uncertain, and a whole bunch more all at once, about the prospect of this enormous operation.

I have read various posts as far back as a year and I must say I admire each and every individual on this board. I have been encouraged and enlightened more on this board than any other source I have available to me. Thank you all so much...

Today, physically, I feel wonderful, and I will worry about tomorrow when it comes...

P
Paladin
 
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Postby Rik » Tue Sep 13, 2005 10:58 am

Hi Paul ... welcome to the Board ... :0)
hope your transplant is soon and goes really well mate ... dont hesitate asking anything thats on your mind ...
good luck and do let us know how things are going ...
Rik
 
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Postby harryf » Wed Sep 14, 2005 8:31 am

Morning All My name is Graham and live in a village called Wilstead just south of Bedford UK

I was diagnosed with Chronic Pylonephritis when I was 17 , some 30 years ago.
I have just started haemo dialysis August 2005. So far all is going okay butI'm trying to get a day time slot as, at the moment, I have dailysis on Monday, Wednessday and Friday evenings, I have retired from 25 years in The Police so I'm at home all day .

I'm married with four children and three grandsons and one on the way.

I'm a big supporter of Bedford Blues rugby club

regards to all
harryf
 
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Postby Mike » Wed Sep 14, 2005 12:06 pm

Hi Graham,

welcome to the board :D Hope the dialysis is going well for you, I've been on peritonial dialysis for nearly a year and my brother has been on hemo for 12/13 years or something like that. Please feel free to ask any questions no matter how silly they may seem and we'll all do our best to help you out as much as we can.

Mike :D
Mike
 
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Re:Hello all

Postby Angel » Fri Sep 16, 2005 10:08 pm

I don't think I have ever formally done this but have been knocking around here for a fair time so many of you know me. As a brief outline I will summarise my position. I am nearly 30 and was born with hypo plastic kidneys and in my case this mean't my right one was small and malformed and my left wasn't present although I have a small ureter on that side. I went on CAPD at 6 years of age and had my first transplant 3 months later which lasted a week. Then I waited 18 months for my second one which lasted 8 months. Due to some of the incidences that had happened and given I was a rebellious kid and believing my life was completely normal I refused another one until I went onto Haemo dialysis at 23.
Unfortunately when they came to take the CAPD catheter out the surgeon nicked a blood vessel and I had a slow bleed for over a month which then calcified leaving behind 1.5 litres of blood and a stomach like the white cliffs of Dover. I used to take the mick out of it and laugh until it became apparent in my case that this would lead to me being unable to have a transplant and suddenly it wasn't so funny anymore.
So thats where I am now, with a new consultant-well 3 years ago I changed who is doing his utmost to get this situation changed. Its been the best thing I have ever done to change to him as my previous one gave up on me a long time ago. Its also been very stressful as for 3 years now I have been undergoing various treatments and uncomfortable tests which have at times made me feel a bit iffy to say the least. But he has vowed to never give up on me which is all I can ask for.

Oh and my real name is Michelle :D
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