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Our Kidney Blog is Australia's first Kidney Health Consumer feedback mechanism.  It enables people with kidney disease to share personal views and stories.  It provides key decision makers with feedback from those at the front line, dealing with this silent killer.  In a busy world  it's difficult to be heard - contibute your thoughts, help build a meaningful meeting place and voice for our kidney health community.  Our Kidney Blogosphere is reviewed by our Consumer Participation Committees.  You may also wish to make a difference in other ways.

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Bloggers from our 'kidney' community
Location: BlogsYour Kidney Blog - Have your say    
Posted by: Administrator Account Monday, 17 March 2008
What's happening in your 'kidney' world. Do you have something to say - speak up here and be heard.

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Comments (19)   Add Comment
By Wayne Green - National Health Services Manager, Ki on Thursday, 20 November 2008
Re: Bloggers from our 'kidney' community
Hi RustyTears.... all stories shared by people who have kidney disease are worthwhile. Some people experiencing kidney problems often feel isolated. We encourage anyone to share their special stories on this website as each case is individual.
However it is important to note that no personal information or requests for direct financial or face to face support is allowed. Further, the National Kidney Foundation in the USA www.kidney.org has many affiliates scattered through America. You should try to contact the branch closest to you, for the one on one support and info you need. They also offer contact with support groups, via email and face to face groups. Warm regards - Wayne

By rustytears on Wednesday, 19 November 2008
Re: Bloggers from our 'kidney' community
I live in the USA. (please don't hold it against me, i never voted for bush) Anyway, I AM DESPERATE FOR HELP AND ANSWERS AND CANT SEEM TO FIND ANY. LONG STORY SHORT. My mom died at age 24 from ESRD, (i was 2) her brother died at age 24 from ESRD, I was terrified i wouldnt see my 25th BD but made it .I was diagnosed with kidney disease at age 7 and had biopsy at age 27 because my two children, (which I had been assured prior to conception, could not possibly be born with kidney disease even though I had it and my mom...etc.) aged 3 and 5 at the time were suspected because of a routine check up and urinalyasis, later confirmed with a biopsy. ANYWAY, I am desperate to tell someone MY somewhat long story of my DESPERATE SITUATION THAT I NEED ANSWERS TO RIGHT AWAY, BUT wont bother to write the whole thing here unless I am told this is the proper place to do so, and that someone actually cares to read and offer suggestions to help us. i have NO LIVING FAMILY LEFT. THEY HAVE ALL PASSED AWAY. SO, if anyone could please post that i am at least looking for help in the right way and place by doing this here, I bother to put the whole story here. otherwise Iguss I wont bother continuing on with it. please let me know at least that much. thank you im so desperate

By Bradley voller on Sunday, 2 November 2008
Re: Bloggers from our 'kidney' community
Im just amazed at the amount of support that you guys get from your health care system.In South Africa,where i live.renal disease and treatment does not enjoy much priority.It must also be borne in mind that we have a massive HIV infection rate and resources have to be thinly distributed.I have been on HD since 99,PD for 4 years prior to that.Work a full time job as a High school science teacher and have an excellent quality of life.And spend my weekends on my Superbike.CRF need not be a death sentence and one can enjoy a full and productive life whilst on HD.I would love to visit Australia(Phillip Island) some day >if anyone can supply me information for my treatment (locations ,cost etc) whilst im there,down under

By Steph on Saturday, 1 November 2008
Re: Bloggers from our 'kidney' community
Hi everyone,
I'm a dialysis nurse in the NT and we recently had a young woman start dialysis in our unit, she is 17 years old. haemo must freak her out BIG TIME! she always looks frightened and nervous on the machine, and won't talk to me except one word answers. i was wondering if anyone could give me any pointers on where to start? are there any online resources that i could print out to give to her?

By Teresa Taylor on Friday, 10 October 2008
Re: Bloggers from our 'kidney' community
Hi Nat

For further information on Minimal Change Disease - see these links http://en.wikipedia.org/wiki/Minimal_change_disease and www.unckidneycenter.org/kidneyhealthlibrary/minimalchange.html

The specialist you are consulting should be able to provide you with an appropriate treatment plan and further information.

Hope this information is helpful
Best regards T.

By Chris Lloyd on Friday, 10 October 2008
Re: Bloggers from our 'kidney' community
Hi Nat,

I had not heard of this MCD before so I Googled it. In answer to your question I found that the normal intake of protein and in fact more than this amount is not really considered a bad thing in your case. That's a plus. Exercise is strongly recommended (nothing new there). Low salt.
Overall the out look is good for you Nat. I read that up to 50% can relapse, but this can be treated again with steroids. Most never reach end stage renal failure.

Chris.

By Nat on Friday, 3 October 2008
Adult Minimal Change Disease
Hi

I feel a bit guilty posting on this blog mainly because I am one of the very lucky adults who has been diagnoised with MCD instead of one of the more serious conditions. I don't know anyone else with this condition and can't seem to get a real handle on it (maybe its pyschological) e.g. are there things that I should or could be doing which will prevent or assist in preventing a relapse, foods etc ? Any advice would be greatly appreciated.

Cheers

Nat

By Brad Rossiter on Thursday, 11 September 2008
Re: Kidney Bloggers from our 'kidney' community
Dear Sally, I was on PD for 5yrs and this seems to sound a lot like myself. I was advised to change to Hemo and it certainly made a difference to me.My levels all fell and this then placed me back onto the Transplant list, which happened, Regards,
Brad Rossiter
Eurobodalla Renal Support Group
bradrossiter521@hotmail.com

By Sally on Wednesday, 10 September 2008
PD and haemo - treatment decision and queries
Hi to all kidney bloggers - I was hoping other dialysis people may have experienced the following and give me some advice - my creatine clearance is not good - not really bad yet. I am on PD doing 4 exchanges a day - and it has been suggested I may need a "little bit of haemo". Has anyone gone down this route. I am certainly not feeling too terrfic. Regards Sally

By ChaLOTTE wISDOM on Thursday, 28 August 2008
Re: Local events, updates, interesting items
Jess Griffin on Australian Idol was a kidney disease sufferer at the age of two. Go Jess!

By Teresa Taylor on Wednesday, 30 July 2008
Re: General Kidney Health
Hi Sul - when you are ready to absorb more detailed information contact us on the Kidney Health Information Service 1800 682 531 and one of our Health Managers will have a chat to you. Or if you wish to read information before you talk to anyone, access our Fact Sheet Hereditary nephritis: Alport Syndrome in the Patient Information section - under Fact Sheets.
Sharing a problem with others often helps halve the stress.

By Sul on Wednesday, 30 July 2008
Re: General Kidney Health
I was just diagnosed with Alports at 25 years of age this month? I am still not allowing myself to let it settle in my brain?

By Btad Rossiter on Thursday, 17 July 2008
Re: General Kidney Health
Eurobodalla Renal Support Group invites all to attend our next get gogether on Thursday 14 August 2008.
Venue - Batemans Bay Bowling Club
Time - 11.30 am
Lunch after this @ regular prices.
Contact: Brad Rossiter on (02) 4472 8074 or e.mail - bradrossiter521@hotmail.com

By KHIS Infoline Health Manager Rebecca's reply - on Wednesday, 14 May 2008
Re: General Kidney Health
Hi Naomi,
Thankyou for your enquiry - I can imagine that you are feeling emotionally low and unwell! It is very important that you speak with your doctor about the symptoms that you are experiencing to see if he can help with this.
KHA have numerours fact sheets that may be useful for you to read. Fact Sheets we would recommend:
www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx
-Nephritis
-Kidney Cysts
-eGFR

We also have a book available to purchase titled 'The SANE guide to good mental health,' which may also be of benefit. Please feel free to contact our healthline if you have any further questions.

By Naomi on Monday, 12 May 2008
Re: General Kidney Health
I was diagnosed with Glomerulonephritis Alports Syndrome and recently told that my right kidney is not working and the left kidney is deceasing in size, and my Gfr is reducing. I also have large cysts on my kidneys. I have a very strong family history of renal failure resulting in early death. My problem is that I have naturally LOW blood pressure and taking blood pressure tablets is making me very unwell. Due to the low blood pressure my resting heart rate is very high and I feel faint.Can anyone tell if there is anything else I could take. My doctors have told me I have no choice it's either my kidneys or my heart. I feel very low emotionally and I am unwell most days, everything seems difficult. Hope someone can offer their story to help me. Thanks. Cheers Naomi.

By Enid on Thursday, 10 April 2008
Re: General Kidney Health
I've just found out today that my left kidney isn't functional at all. It was a shock, and I know that other people have much more serious conditions, but I may now be faced with removal of the kidney. It is very small, and has always had reduced function, but flank pain sent me to the doctor, and after tests it was revealed it wasn't working at all. The other kidney is also not normal, being a duplex with double ureters and some malfunction in the lower part which had surgery several years ago. I guess I'm just wanting to talk to other people in a similar situation because I don't like to worry my friends and family. I will be discussing options with my doctor next week. I am trying to think positiively, but feeling a bit nervous about things.

By sam on Thursday, 10 April 2008
Re: General Kidney Health
Thanks Teresa, I have had a look at the links and they have been helpful, also thankyou for your kind words of encouragement.
I will keep in touch

By Teresa Taylor on Wednesday, 19 March 2008
Alport's Syndrome
KHIS Infoline Health Manager Jane's reply -

Hi Sam
All these symptoms you describe are certainly not in your head. You are definitely going through a very stressful time and although stress may contribute to the way you feel it is probably not the cause. Fatigue and nausea are some of the common symptoms that are experienced by those who have advanced kidney disease.
It is important that you discuss these symptoms with your specialist as there may be some treatment available to assist with making these less severe. I have provided weblinks to particular fact sheets which will assist you with understanding more about why you might be feeling the way you do. I hope that your son continues to remain well for many years to come.

KHA Fact Sheets we would recommend:
www.kidney.org.au/ForPatients/HealthFactSheets/tabid/609/Default.aspx
Hereditary nephritis: Alport Syndrome, Chronic Kidney Disease, Anaemia and CKD and our You’re in Charge – Self Management booklet

By sam on Wednesday, 19 March 2008
Re: General Kidney Health
I am a mother who has passed on Alports Syndrome to my son who is now aged 11. I have recently been told my GFR is now at 15 and I will require dyalisis soon. I am feeling a bit tired, like i need a holiday, but i am not sure if this is stress or renal falure? Can anyone help with more information. I also get a bit of nausea in the night and early morning - is this normal or is this in my mind? My son is going well at this stage with no hearing or eyesight problems, I have my fingers crossed that he will have no problems until later in life.


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Last updated: Nov 2008.