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.

Moderator: administrator

Tracy welcome

Postby Elaine » Wed Mar 08, 2006 6:01 pm

Hiya and welcome Tracy

I am a main carer for my daughter Rach who is 18 and just had kidney transplant 5mnths ago and doing well (touch wood!). She too has had kidney problems FSGS & Nephrotic syndrome since age of 2 so been quite a rollercoaster of life, especially last 5years.

Be good to see you post on here :D


best wishes Elaine & Rach :Dxx
Image
Elaine
 
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

Postby Gerry Thompson » Wed Mar 08, 2006 9:20 pm

Hello and welcome to the forum Tracy. I've not been on the board very long myself but I can assure you that the folks here are genuinely nice and above all, understanding. Lets hope that all continues well with you and feel free to chat anytime. :lol:
Gerry 8)
Gerry Thompson
 
Posts: 5
Joined: Sat Feb 25, 2006 7:00 pm
Location: County Durham UK

hello

Postby w brown » Thu Mar 09, 2006 6:00 pm

This is my first time posting but have been tuning in daily trying to find out what KD is all about. I think that once I get to grips with the terminology you use I'll understand better. Like Scarlettuk who has also just joined I would like to give a little history without being boring.

Was diagnosed in Jan 06 with CKD. I lost the left one to cancer 10 months ago and was told at the time that one kidney was all you need so didn't worry too much. The diagnosis was that I have lost 70% function and the remaining was going at 10% yearly. That didnt have much of an impact on me as I had nothing to compare it with and at the time I wasn't aware of the ramifications e.g. dialysis and all the other problems that I am now reading about on the board. Reading the board is so useful and I am putting together the questions I will ask the consultant when I see him next month. At the moment I feel in a sort of limbo. to complicate matters I also suffer from Parkinsons disease....anyone else out there in the same boat?

Lovely to read your input....you humour and good spirits is a great lift

Billy.....
w brown
 
Posts: 22
Joined: Mon Feb 13, 2006 12:04 pm
Location: CHELMSFORD ESSEX UK

Postby Rik » Fri Mar 10, 2006 10:45 am

Hey there Billy welcome to the Board ...
if there is a term we use that you dont understand dont hesitate to ask ...
when I was first on the board it sounded like a foriegn language!!!

I hope we come across as friendly and not a Board full of kidney geeks!!!! :shock:

I look forward to seeing both you and Scarlett posting a lot more ...
all the best
Rik
:0)
Rik
 
Posts: 1723
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Postby nellylela » Fri Mar 10, 2006 11:18 am

hiya billy and tracey - welcome "aboard" :lol:

just repeating what evry1s said so far - dont hesitate to ask nething at all :D

oh and what rik said??? hes the only kidney geek around :? :roll: :wink: :lol: only kidding rik!!
Image
"Those who bring sunshine to the lives of others cannot keep it from themselves." James M. Barrie
nellylela
 
Posts: 684
Joined: Tue Aug 09, 2005 10:30 pm
Location: stanmore, middlesex

Postby Nicky » Fri Mar 10, 2006 1:32 pm

& he wears bedsocks too!
Oh no - sorry - that's Stevie!!
Welcome to KPG - nice to meet you. I think everyone here is great!
Even when I've got all tetchy on a bad day everyone is understanding and we PM each other if there are misunderstandings. A great place :)
Look forward to hearing more from you, take care :)
x Nicky x
Image
Nicky
 
Posts: 691
Joined: Thu Feb 10, 2005 8:33 pm
Location: Cornwall

welcome

Postby Elaine » Fri Mar 10, 2006 2:21 pm

Welcome Billy to the baord :D Hope you find the posts useful.

Elaine & Rach :D
Image
Elaine
 
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

just joined - hello

Postby bigbuzzard » Sun Mar 12, 2006 12:22 pm

Hello all. My name's Andy (though I see there's already one of those around here). I started on dialysis at Guy's Hospital this week, after first seeing a renal doctor there last Monday - so it's been a bit of a week! It's a huge relief to discover this community - so far my experience of my fellow sufferers has been somewhat depressing! I'm extremely relieved to find that there are plenty of other people out there who seem to be living life to the full, despite the various hassles we all have to put up with.

I'm a musician (jazz saxophonist and choral singer) and various other freelance stuff (DVD design, organising a food festival this summer...). I run a band and tiny record label. I'm determined to keep as much of this going as possible throughout all this - am I being hopelessly optimistic?

My mother had a kidney transplant 12 years ago, so this is not all as much of a bolt from the blue as it might seem. I've known that it was possible - even likely that my polycystic kidneys would deteriorate one day. It's just a little earlier than expected.

I've been writing a blog for a few weeks at http://bigbuzzard.blogspot.com and have an older website at http://www.saxontheroad.com

I'm told that it's theoretically possible to arrange h-dialysis sessions around the UK. I'm supposed to be working at a festival for a week in Cornwall in July, and going up to Edinburgh for a few days at the end of March. Any tips on the best way to organise this would be gratefully received. A couple trips abroad (US and France) are also in the pipeline. If I'm still doing HD then, might that be possible?

Best wishes to all
User avatar
bigbuzzard
 
Posts: 1480
Joined: Sun Mar 12, 2006 11:21 am
Location: Devon, UK

Postby nellylela » Sun Mar 12, 2006 1:31 pm

hiya bb welcome to our "little" community :lol:

feel free to pm or post at any time with anything :) tc hugs :D
Image
"Those who bring sunshine to the lives of others cannot keep it from themselves." James M. Barrie
nellylela
 
Posts: 684
Joined: Tue Aug 09, 2005 10:30 pm
Location: stanmore, middlesex

welcome

Postby Helen Rambaut » Sun Mar 12, 2006 9:58 pm

welcome bb. I dont know how easy it is to get around on HD but have you looked into the option of PD? I find it very flexible. If you need to be on the move a lot you might find it is suitable. Suggest you discuss it with your consultant. My mother had a transplant 27 yrs ago and I too knew that one day I would have to dialyse. I didnt spend any time thinking about it until my function dropped. It went from 12% to 4% in about 3 months. A bit of a shock. So I can guess how you are feeling. I started on PD 2 years ago and I just decided it wasnt going to stop me doing things. If you have any more questions just get in touch. Helen
Helen Rambaut
 
Posts: 745
Joined: Mon Feb 13, 2006 11:34 pm
Location: London

welcome Andy

Postby Elaine » Sun Mar 12, 2006 10:40 pm

Welcome Andy :D to the board here many people here friends relatives, patients carers etc.

Hope all goes ok 4 u :D

best wishes Elaine & Rach :D uk
Image
Elaine
 
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

Checking back in after long absence

Postby Pierre » Thu Mar 16, 2006 1:20 pm

Hi everyone. I used to participate in the KPG bulleting board regularly a few years ago - under the old format. I gradually drifted away some time after I started dialysis a little over 3 years ago - primarily because I was so busy with my own IgA nephropathy email group and bulletin board. I did conventional hemodialysis in a dialysis centre until a year ago, when I moved on to daily hemodialysis at home. I did about 4 months on what they call "short daily hemodialysis", which consisted of 6 treatments per week of 2 hours each, and since then daily nocturnal hemodialysis with is 6-8 hours treatments overnight 5-6 nights per week. I've had some spectacular results with daily nocturnal in particular, and it's really a shame that this method of dialysis isn't available to more people. Even where I am, they can only handle limited enrolment due to funding issues. I use a Fresenius 2008K dialysis machine, which is identical to the ones used in-centre, except that it's not as tall. Some people call this a 2008K@home, or a "Baby K".

I want to thank Rik who mentioned my name (and my indispensable Foundation for IgA Nephropathy partner Cy's as well) in a recent post in connection with IgA nephropathy.
Pierre
IgA nephropathy starting circa 1977
Hemodialysis Oct. 2002
Short daily and daily nocturnal hemodialysis @home since March 2005
Pierre
 
Posts: 27
Joined: Thu Mar 16, 2006 1:00 pm
Location: Ottawa, Canada

Postby Mike » Thu Mar 16, 2006 3:41 pm

Hi Pierre,

Good to hear you doing well on hemo. Your right that this type of dialysis should be available to more people but here it is the same problem as renal services are generally underfunded. My brother is hoping to go over to canada for his last year of uni but it is not sure if the NHS will fund his dialysis. We may have to raise up to £12000 to pay for his dialysis and we're already raised £1000 in a little over a week! We are hoping that our local health authority will agree to fund at least some of the cost as they would have to be paying for his dialysis if he was here anyway. We've had a good response from the kidney charities here who although some of them can't actaully help with the dialysis fund have agreed to help with other costs involved. We've even had a donation from a canadian member of PUMPA which is amazing.

Hope to see you posting, I am aware of your website and I've been on this site for a few years and vaguely recognise your wifes name. I have FSGS so have never posted there.

welcome to the new board

Mike
Mike
 
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Postby ozjen » Sat Mar 18, 2006 10:38 pm

hey i've only just discovered this board so here goes
i'm 28, i suffered acute failure three years ago at the birth of my son. I had a blod clot in the placenta and the obgyn was more interested in his golf game and left me there for two days (without telling the replacemtn obgyn) until my obgyn found me and gave me a ceaser as soon as he found me.

Thankfully for him my son and i are alive and he only has minor hearing loss from the antibiotic they gave him at birth. I lost blood to the extent that i had multiple failure but just my kidneys came back.

only two good things came of it
1) my son
2) i got a free chopper ride to the nepean hospital

The original Obgyn may have been a jerk but i can't fault the rest of my carers, form icu to the renal ward they were all magnificent.

The first four months were hectic, heamo/baby then capd. i left hospital with 11% in feb 2003, by dec 2003 i had the capd catheter removed as i went back upto 23%. It has been fantastic, i have never appreciated life so much.

In early 2004 i decided to have my tubes tied to take the stress of my relationship, the doctors were worried about me having another one as bad pregnancy's run in my family. I figured, i'd rather be here for the one i have than risk it happening again for one that may not even survive. My only saving grace was that i was healthy first time around. I'm damn lucky that it's only my kidneys gone. At first they thought i might need heart/lung and kidney, i feel more sorry for my family, they are the ones who had to be told to say goodbye.

I have now fallen back to 8% and i'm due to have the catheter put back in this coming wednesday (fingers crossed, only if i can get my potassium back down, coversyl put it up too high).

My partner is in the process of working up for living donor, he's amazingly a 1/6 match and type O, must have been fate. The co-ordinator has set a tentative date for june 7.

I am just lucky i have a good boss and they are happy for me to have the three months off after the op.

My once flat stomach is starting to look like something out of a freddy movie, does anyone have anytips for keeping weight down on capd. Last time i put on so much weight that i'm still losing it?
ozjen
 
Posts: 10
Joined: Sat Mar 18, 2006 9:56 pm

Postby ozjen » Sat Mar 18, 2006 10:40 pm

sorry i ment to say ... only my kidneys didn't come back
ozjen
 
Posts: 10
Joined: Sat Mar 18, 2006 9:56 pm

PreviousNext

Return to The KPG Forum

Who is online

Users browsing this forum: Google [Bot] and 12 guests

cron