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Your Kidney Blog
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Use your Kidney Blog and be heard
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.
Start blogging now - no registration required - your Kidney Blog is open to anyone from our kidney community to comment. Click on subject heading below - enter your blog note in the box at the bottom of the page - tick agreement box to upload. Any entry may be moderated if it does not fulfil the Terms of Reference or Rules of Conduct displayed on YAP Space .
Current Blogosphere Quick Links are:
Bloggers from our 'kidney' community I Transport I Home dialysis I Organ Donation I Donor Compensation I Early Detection and Prevention I
NOTE - Kidney Health Australia reviews material posted - personal emails or contact information can not be displayed. We encourage free and creative expression, however, as in any environment where people are given this freedom, conflict may arise. If an author uses language or materials that offend the material will not be displayed. Do not post content that is unlawful, harmful, threatening, abusive, harassing, defamatory, vulgar, obscene, libelous, invasive to another's privacy, hateful, or racially, ethnically or otherwise objectionable. Treat other people's privacy as you would your own.
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Bloggers from our 'kidney' community
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Comments (26)
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By Maria on Saturday, 3 January 2009
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Re: Bloggers from our 'kidney' community |
I have been on dialysis for about 30 years on and off, and have been waiting for a transplant for 16 years. In the last couple of years I have been in and out of hospital every other month for fistula problems. About 13 weeks ago I had a vein taken out of my leg and put in my arm (a repair job, like the rest) and thought that my fistula problems would be over for a while, but next week I am being admitted yet again to fix my fistula. WHy do these surgeons keep repairing fistulas when they obviously know that there will be more problems to come. I just sick of it all! What is going on with research? Why can't they find a new way of fixing fistulas so that they last much longer? I used to go on holidays each year, I had booked a cruise in 2008, but 2 weeks before leaving I had to cancel my trip due to fistula problems. I would like to go o a trip this year, but as the new year begins, the fistula problems still continue and I don't know what I should do. There must be a better way! What are they doing with pig research (which is closest to humans) in the way of using pig's veins as fistulas or pigs kidneys?
ANyway, that's my winge for now. |
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By rosa on Friday, 19 December 2008
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IgA Nepropathy, Indapamide medication and kidney biopsy! |
Good day! I 'll be 50 by the 30th of Dec. And I am now CDK, Chronic Renal Failure, end stage 4, kidney sufferrer, with an EGR of just 21...anemic with ghout & athritis!
Shane and to other kidneys sufferers, please have that kidney dialysis! I don't have that chance,of knowing what kind of kidney disease I have before. I am a structural victim of the hospital system! Why? Several years ago, whislt studying at the University, my university physician, referred me to a renal doctor at the the public hospital here in Darwin. But after several visits, when I asked him, if I'm coming back, I was told to just see a GP! Five years passed, I don't like those GP's as they don't seem to know what they are, doing. I have to tell them I need to have blood tests and I will even tell them the 3 medications (Norvasc, Tritace and Indapamide) prescribed to me, by that first renal doctor. One of them even insensitively remarked that I am his servant, after learning that I'm from the Philippines, originally.
Sad because by the time I met my present GP, who care & studied my case, she informed me that my kidneys was functioning at just 28-30%! I was shocked, to learnt that it was functioning at that level since the last 7 years. She referred me to a renal doctor. By February my kidneys are functioning at just 20-21% I cried in front of my present renal doctor, and told him, how I wished that first renal doctor did not tell me just to see a GP. It misled me and interpreted that there was nothing to be alarmed with! He was told I was taken out of the system as I refused biopsy, I disputed this! There was no proper form, nor call, thou I live in the same family residence for the past 18 years. I was told I skip 2 appointments, I am sensible and I won't skip appointment, particularly on somethings that sounds serious. My present renal doctor corrected the oversight in the past, and he performed the biopsy himself. Too late, my kidney disease is IgA Nephropath, a common kidney disease, causing kidney failure in the world! Unluckily because mine was not treated early at an early stage I I end up, among the 25% that develop chronic renal failure. And I almost end up comatose! Why? Before my epigastric hernia operation (Nov 3), I sensibly told my anesthesiologist that my kidneys are functioning at just 20-21%. He checked my sodium blood test and he told me when I wake up, that my sodium is very low, because of my Indapamide medication. He called my renal doctors and asked them to stop prescribing that medication to me. Indapamide is the tablets to makes me wee, which unluckily washed all the sodium in my body. I was weak, but was discharged the next day. No advised on how to address the very low sodium count on my blood. S I tried doing self-medication, a glass of water with salt, yucky! After 2 days in the presence of my husband, I feel pain, I shaked, thrushing up and down as if I was having a cardiac arrest! I was rushed by ambulance to the emergency ward, my energy plummeted! All along I was complaining to my renal doctors, about my rashes, itchy skins, dizziness, nausea and fatigue, headaches...I was told my itchy skin, rashes has nothing to do wih my kidney disease. Only my GP care, she prescribed me with some ointment. MY dizziness was linked to iron deficiency! I just want to move on with my life! To KIDNEY AUSTRALIA, you can use my story to educate people to have kidney biopsy to diagnosed their kidney disease like what they are doing in France and Japan. Only a biopsy can sho the IgA deposits in the kidney filters. I missed on the opportnity of the symptons being treated effectively, or kidney damage slowed down. Now, I can only work for 8-14 hours each week due to ill health, always experiencing shortness of breath, always tired, muscles twitching, my skin now have yellowish-brown tint... |
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By Sue O on Friday, 19 December 2008
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Re: Bloggers from our 'kidney' community |
hello
My mum has had both of her kidneys removed recently and she has commenced haemo-dialysis. Following dialysis some days she is just tired other days she has very bad nausia and dry retches. This can be same day or next day. There seems to be no pattern. Of course she is very deppressed at her inability to cope with her situation as life has so dramatically changed. I am sure if she could read comments from other people with no kidneys (this does seem to be important to her) or at least someone whose life has settled down after the initial shock of change in life, she would see light in the tunnel. |
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By Beth Richardson on Tuesday, 16 December 2008
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Re: Bloggers from our 'kidney' community |
Hi Shane Paul,
I can appreciate that you may be feeling quite worried and overwhelmed. For many people, learning that kidney function is comprimised can come as quite a shock.
There is certainly a great deal of information about CKD on various internet websites, including KHA's website (see Fact Sheets section). It is always important that this information be utilised in a way that takes into account your own medical history and circumstance. Progression of CKD can occur in different ways for different people. I would suggest that you take the information accessed on the interenet to your GP to review. Having the information in front of you while at a GP visit can prompt you to ask certain questions of your GP.
In terms of your specific situation, I would recommend that you contact our Freecall number 1800-4-KIDNEY to discuss further with a health services manager who can refer you to additional resources/services.
I do hope this information is helpful.
Best Wishes,
QLD Health Services Manager
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By Shane Paul on Tuesday, 16 December 2008
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Re: Bloggers from our 'kidney' community |
Hi KHA QLD Health Services Manager
Thanks for your detailed reply. I have a CKD 3 with a reading 53 eGFR (age 42 years). I found out this last week when I went to see my GP and he was alarmed but he didn't write any refereal and said that we will do another test after a month time.
I had another test 2 months ago with a reading of 49 eGFR but after that test my GP(not the same GP) only said that your Kidney test level is low but didn't alarmed nor suggested any change in diet.
I am very much concerned and worried after visiting all the Kidney related Internet sites that it is a downhill from here. Does everyone with stage 3 has to go to dialysis sometime later in the life or with strict diet and care can we able to stop going downhill for many years. Do people at this stage have a very short life span.
I would appreciate your response since I am very worried.
Thanks
Shane Paul. |
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By Beth Richardson on Monday, 15 December 2008
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Re: Bloggers from our 'kidney' community |
Hi Shane,
Most of the direct costs associated with dialysis treatments (hospital and home dialysis) in Australia are indeed covered by Medicare for individuals with valid Medicare coverage. Valid Medicare coverage will often require you to be an Australian resident with a Medicare card.
In the event that you have private health insurance, you should check with your insurance provider as to the level of coverage you can receive for dialysis costs under that particular plan.
Depending on whether you decide to utilise home or hospital dialysis, there are some additional dialysis-related costs that you may need to cover yourself. For home dialysis, these additional expenses may include the cost of modifying plumbing or electrical systems in the home. If hospital dialysis is the treatment choice, then you may need to cover your transportation costs to/from the hospital (such as petrol, bus/taxi fares). Always check with your renal health care team to determine if you are eligible for any rebates related to water/electricity or if there are community services available in your area to assist with transportation.
Best wishes Shane,
KHA QLD Health Services Manager
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By Shane Paul on Monday, 15 December 2008
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Re: Bloggers from our 'kidney' community |
I like to know whether the Dialysis cost is covered by Medicare Australia or do I have to pay dialysis expenses from my own pocket.
I would appreciate your reply. |
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By Wayne Green - National Health Services Manager, Ki on Thursday, 20 November 2008
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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 |
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By rustytears on Wednesday, 19 November 2008
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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 |
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By Bradley voller on Sunday, 2 November 2008
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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 |
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By Steph on Saturday, 1 November 2008
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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? |
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By Teresa Taylor on Friday, 10 October 2008
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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. |
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By Chris Lloyd on Friday, 10 October 2008
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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. |
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By Nat on Friday, 3 October 2008
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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 |
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By Brad Rossiter on Thursday, 11 September 2008
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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 |
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By Sally on Wednesday, 10 September 2008
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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 |
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By ChaLOTTE wISDOM on Thursday, 28 August 2008
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Re: Local events, updates, interesting items |
| Jess Griffin on Australian Idol was a kidney disease sufferer at the age of two. Go Jess! |
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By Teresa Taylor on Wednesday, 30 July 2008
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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. |
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By Sul on Wednesday, 30 July 2008
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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? |
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By Btad Rossiter on Thursday, 17 July 2008
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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
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By KHIS Infoline Health Manager Rebecca's reply - on Wednesday, 14 May 2008
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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. |
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By Naomi on Monday, 12 May 2008
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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. |
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By Enid on Thursday, 10 April 2008
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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. |
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By sam on Thursday, 10 April 2008
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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 |
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By Teresa Taylor on Wednesday, 19 March 2008
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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 |
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By sam on Wednesday, 19 March 2008
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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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