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

Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Post by Rik »

Hi again Jen ...
congrats of the birth of your son :D ... but really sorry to hear that things are sliding downhill somewhat with your kidney function :cry:
glad you are back for support ... its a great bunch of folk here that do great support ... :D :D :D
dont ever feel no question is too small are daft to ask... we have all felt like that at some point ...
hope your doing Ok ...
:0)XXX
Missy
Posts: 2
Joined: Thu Apr 27, 2006 9:48 pm
Location: Surrey

Hello ...

Post by Missy »

Let me just say that you are all so incredibly brave, courageous and I admire you all.

My dad has renal failure. He has about 12% in his kidneys but will be starting his tests a week Tuesday and will soon be fitted with a catheter for perotonial CAPD in the coming weeks.

In 2001, he was diagnosed with a very rare disease called Wengers Disease which affects something silly like 1 in 4 million. As well as it causing the immune system and his body to fight itself, it has caused both his kidneys to fail. He was being successfully treated with pred and a few other (hundred or so!) tablets but then shortly after new year, his createnin was found to be at a huuugly high level and he was rushed in for a biopsy and tests. Long story short, he was very lucky his cretanin levels were tested when they were as he might not have been with us today.

From the moment it was realised he had kidney failure I immediately said to my mum that I wanted to be a donor. My dad has found this a little difficult to swallow but he is now coming round to the idea.

I was told today by one of the nephrologists that you have to be a certain weight to start the tests and I have to lose 2 STONE very fast which I am now panicking about.

Anyway thank you all for listening. I look forward to asking many questions here! btw, is anyone here being treated at St Helier in Epsom?(please excuse my spelling of the drug names!!)

Take care x
:D
tommc
Posts: 665
Joined: Fri Dec 02, 2005 2:59 pm
Location: Wishaw, Scotland

Post by tommc »

Hi Missy welcome to the board. Im sorry to here your dads ill. Ask any questions you like there are many people here patients and carers who will try and help best of luck losing weight and i hopeit all goes well for your dad on PD.

Tom
Transplanted 31/05/09


http://www.uktransplant.org.uk
JROxford
Posts: 1
Joined: Tue May 02, 2006 6:53 pm
Location: Windsor

Introducing Ourselves

Post by JROxford »

Hello All,

I've only just found this website today so this is the first time I am saying 'Hello'.

I'm James, 27 and live in Windsor. Diagnosed with IGA Nephropathy some 2 years ago I'm at the very unlucky end of the spectrum in respece to symptoms - am frequently physically sick, can't keep fluids down, urine looking like coca cola with blood, together with very achy and painful lower back (kidneys appear to swell more than twice their size regularly). Medication wise I just take paracetamol together with codeine and antibiotics when I can get enough energy together to get out of the house.

Am due to have my tonsils out in a few months which I'm looking forward to as I seem to get tonsilitis every 4 weeks or so nowadays.

I'd be interested to hear from anyone who has similar symptons to me together with any thoughts on other medications? (I hear ACE inhibitors or some form of steriods can be recommended).

Reading some of your postings has just picked me up actually - is nice to learn of positive stories of people with similar conditions.

Hope to hear from somebody soon,

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

Post by Mike »

Hi James

Welcome to the board.

I'm sorry to hear about all the problems you are having, I can't help very much with IGA Nephropathy as I have FSGS so not much knowledge of IGA. I'm sure some others here suffer from this kidney disease so will be able to help you.

Hope that having your tonsils removed helps you to feel a lot better

Feel free to post as everyone here is friendly and will help you as much as they can.

Hope you feel better soon

Mike
marky
Posts: 78
Joined: Wed May 03, 2006 8:29 pm
Location: Southern England by the sea

Post by marky »

I'm a bit late introducing myself, just came staight in looking for technical support!

So to make up for my ignorance I've put a comprehensive 'about' page on some free Web Space. Will be putting a 'links' page up in the future with all things I have found amusing and useful. Any contributions welcome.

See:

http://homepage.ntlworld.com/mark.stones1/

thanks for your time ppl
Laurie
Posts: 2
Joined: Sun May 07, 2006 2:07 am
Location: New York
Contact:

Post by Laurie »

Hiiiiiii I'm new here.. I have PKD which caused my ESRD and had a kidney transplant 9mths ago!! the first few months werent easy for me as I was on alot prednisone! I had been on dialysis for 3 half years which wasnt really a night mare as some people put it.. but I guess I was one of the Lucky ones.. but ill take a new kidney over dialysis, and I named my kidney "Eli", funny thing..ever since I got "Eli" Ive been saying Oyyyyy.. when I have pain.. maybe I got a Jewish kidney? Gotta find out the nationality of my doner! LOL! :wink:
Laurie
HI my name is Laurie and I had my kidney transplant July 29,2005
Gil
Posts: 43
Joined: Fri Apr 23, 2004 11:17 am
Location: Michigan, USA
Contact:

Post by Gil »

Welcome Laurie,

PKD here too.
If you are "entitled" to kidney failure then PKD is your best bet. :D
I got a Latino kidney and now instead of Oyyy I say Caramba! :wink:

Gil
Helen
Posts: 1
Joined: Wed Apr 19, 2006 12:42 pm
Location: Warrington, UK

Post by Helen »

Hi just introducing myself. My name is Helen and I am Holly’s (xXx Holz xXx) mum. When Holly was first diagnosed with kidney failure in January 2005 I gave up work as a supply teacher so that I could look after her. Since then her dad and I have been on a very steep learning curve!!! Necklines, fistulas, high potassium, EPO, fluid restrictions, monthly blood tests, high blood pressure, dialysis three times a week and transplants are some of the things we were not familiar with. Now they have become part of everyday life. After the initial shock of Holly’s diagnosis of ESRF (without any warning signs) she was immediately put on dialysis.

Looking back on that time I think her dad and I were in a daze what with Holly being so ill and us being bombarded with so much information about a subject we were unsure about. We have tried to keep life as normal as possible in the circumstances, but re-adjusting hasn’t been easy! Holly has coped well with her change in life style and we are extremely proud of her as she continues with her A level studies in the hope of going to university in September.

Since the very beginning of Holly’s diagnosis her dad and I said we would be tested to see if we would be suitable donors. Although Holly wasn’t too keen in the beginning she came round to the idea. My husband (Alan) was ruled out immediately as he suffers from Asthma and High Blood Pressure, but I went through all the necessary tests but as you may have read in some of Holly’s posts I tested positive for the CMV virus. The decision to go ahead with the transplant or not was left down to Holly, and she decided with our help not to go ahead as she is CMV negative and the risks seemed to be too great. So now we are hoping that the all-important call saying a kidney is available comes someday soon. She has been on the transplant list since August 2005.

Holly has told me how much support she has received from the people on this board. You have given her help when she has needed it; this is very much appreciated by both her and us!

I may want to ask questions in the future, and would only be too happy to help people in a similar situation to ourselves if we can.

Thanks for listening,

Hope you are all well,

Helen x
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Elaine
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

welcome Helen

Post by Elaine »

Hiya and welcome to you Helen.

I am Elaine mum of Rach, who we have got to know Holly over the past few months. It is good to see other mums on the board too as its hard for parents seeing their teens growing up with renal failure and as you have mentioned soooo many issues that accompany renal failure etc. Im glad Holly has found the people on the board helpful and supportive. There are a good few people similar ages to Holly and think helps them to reslise its not, just them' although can feel like it at times.

I have used the board for the past approx 3 yrs since Rach was first starting dialysis and the rollercoaster ride until finally and thankfully a transplant last sept 2005 which we are soo truly greatful for. The changes are amazing and is soo good to see Rach starting to enjoy what she has missed for the past 5yrs or so, life as a teen in general etc.

I do hope you also find support and information from people on this board who are or have gone through similar journeys as Holly and yourselves as a family etc. I look forward to reading your posts and feel free to pm or email me.


best wishes Elaine & Rach :D
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pauline
Posts: 6
Joined: Wed Oct 06, 2004 1:26 pm
Location: Kent England

Post by pauline »

Hi my name is Pauline and i'm umpteen years old welllllll 42 actually lol and i donated a kidney to my daughter in 2004 when she was just 19 two weeks after her birthday, she is doing great now and at university and i'm very proud of her :D [/b]
Elaine
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

Pauline

Post by Elaine »

Good to hear from you Pauline :D

Hope u are keeping well have sent a u a pm :D
Im sure you are very proud of Emma :D

best wisehs Elaine xx
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Chad
Posts: 10
Joined: Sat May 13, 2006 1:11 pm
Location: London, UK

Chad, I'm a Newie

Post by Chad »

Hi Everyone,

My Name Chad and I'm 25, I am currently in the process of donating a kidney to my older bother Jay who is 28. I live in London and am at the last stages of my test to see if I’m a good enough match for Jay. I had my consultation with my doctor just the other day and all my results are good, I have my final test on the 24th May, the angiogram.

I have a Blog site where I post my thoughts, feelings and process of everything I’m going through, if you fancy taking a look then please visit www.livingdonor.co.uk I’ve filmed interviews with my brother and myself and some of the tests which im hoping to have up on the site soon.

Also please feel free to post your thoughts and comments on my site.

Thanks

Chad x
Cheryl in CT
Posts: 412
Joined: Wed Apr 21, 2004 10:17 pm
Location: Connecticut, USA

a message for Chad...

Post by Cheryl in CT »

Dear Chad,

I hope that you know that what you are trying to do for your brother goes above and beyond the "usual"... My husband donated a kidney to me some 3 1/2 years ago, and I will be eternally grateful to him. He, too, went well beyond the "norm" for my sake, and he has truly given me a new shot at life. I simply can't thank him enough. Meanwhile, my three sisters ALL announced, after the fact, that they, too, "would have been" willing to donate. (Ha - now I have it on record that if THIS transplant ever fails, I can turn to them!) It is no mean feat for you to step up & go thru all that it takes to be a donor. As they say, "talk is cheap" - it's the DOing that makes the difference, and I (for one!) think that you're a wonderful, generous soul to do such a thing for your brother.

I'm wishing BOTH of you the very, very best in all of this. If you ever want to chat with either a fellow donor or a "donee", please feel free to send a PM...

I'll be thinking of you both!
-Cheryl- (Connecticut, USA)
bluemoon
Posts: 120
Joined: Thu Jul 15, 2004 5:36 pm
Location: North Yorks

Post by bluemoon »

Hi all,

sort of a newbie. Not posted for a year or so, loads happened, surprisingly non kidney related! Split up with my partner and she took the computer, never mind that it was mine to begin with...anyway, brand new shiny computer in front of me so here we go!

About me: usual story, about five years ago age 30 kidneys packed up, much to my surprise, felt very well. Onto PD dialysis and then a transplant. nearly four years now and (apart from the first six months which were awful) I`m doing pretty well!
Jim
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