Use your Kidney Blog and be heard

Hi Jay
Sorry it has taken so long to reply! You are doing all the right things. I kept working full time the whole way through my disease pre dialysis and felt well, although in hindsight I was probably tired a fair bit of the time but didn’t worry. The high blood pressure can be very frustrating as you know you are otherwise fit and “healthy”. Am now off all blood pressure meds with Nocturnal dialysis ( a small blessing).
My advice is enjoy your life, make every day matter and make sure you have a good nephrologist who answers your questions and thinks outside the box!remember dialysis (if it comes to that) doesn’t mean the end of the world and who knows what medical advancements there are around the corner.
Cheers and good luck.(:

Vittoria / Melissa / Carolyn,

I was recently diagnosed with chronic kidney disease, and a limited remaining kidney function. I had high blood pressure which is now under control with medication. Despite this, I generally feel very healthy.

I am currently exploring ways to manage my condition through oral medication, strict diet and healthy lifestyle. I would be glad if you could share more of your experience with your kidney condition?

Carolyn and Melissa,

You mention that you have had kidney disease for over 10 years, but have only taken oral medication, and have not undergone dialysis. I understand you are generally feeling in good health.

I was recently diagnosed with kidney disease, and have a reduced remaining kidney function. Despite this, I feel generally very healthy, and have not experienced visible symptoms of kidney disease. I have high blood pressure which has been brought down with medication.

Are you able to share more of your experience, as I would like to explore ways of managing my condition through oral medication, healthy diet and lifestyle.

Look forward to hearing from you.

The cost of Dialysis throughout Australia is in the Billions of Dollars and Dialysis units are struggling to keep up and maintain the current flow of patients coming through with Kidney failure. More money, research and testing is required to cope with this building demand throughout Australia and more so on an URGENT time frame and not just ” see how the Budget holds out “.
Please find time to pass this comment on to Health Ministers & Heads of Medical training to maybe add a little weight to the already large problem.

HI Gary,
I have heard of many people changing immunosuppressants without any problems. My husband had his transplant for 17 years, the first 4 years he was on imuran/prednisone. But in 1989 had to change the imuran to cyclosporine because it was affecting his liver ( however, in hindsight, we both feel that this wasn’t the case. We feel that it was the hepatitis C, that they didn’t know about which was affecting his liver. They didn’t find that out untill 1991.) He did well with the changeover, no problems. He was on cyclosporine/prednisone for the next 12 years. Then his kidney was in chronic rejection due to nephrotoxicity from the cyclosporine, so they tried changing him to cellcept. But he didn’t tolerate it. So he is now back on dialysis.

He hasn’t had skin problems from the drugs, but many do. I think everyone is different in how they react to drugs. I hope if you do change, that all goes well. Having your transplant that long is fantastic.

regards Pauline.

To all kidney patients,

I find Soy protein (soy milk, tofu) very helpful against kidney disease deterioration together with CoQ10.

Good luck.

Hi Vittoria,

I’ve had kidney disease (as well as a number of other health problems) for a few years now, & having to take medication can be a ripe old pain in the behind (besides the fact that, according to my nephrologist, I’m already a walking pill factory at the ripe old age of 28). But, at the same time, I know that the medications have been prescribed for a reason, & I know that, healthwise, I’m better off taking the medications than not taking them. I’m also a Registered Nurse, & have seen what harm people can do by not taking their medications like their meant to. I don’t mean to frighten you when I say that, but, all too often, diseases such as kidney disease can be silent, meaning that while you may feel reasonably well in yourself, other factors (such as your blood pressure) may be saying otherwise.

Dear Vittoria and Melissa

I too have had kidney disease for some time now (nearly 10 years), with my doctors talking about dialysis for at least 5 of them. I am fully functioning and generally quite well. I take four different tablets each day plus an injection of Aranesp (erythropoiten).

I don’t like having needles much and often have to brace myself, but I do it because the difference it makes is amazing - I have much more energy than I did before.

I don’t want to go on dialysis but it may be inevitable. In the meantime I will continue to do as much as I can to delay it. Taking the medications and keeping myself as healthy and happy as possible is a small price to pay.

It’s not my place to tell anyone what to do, but I would strongly encourage you Vittoria to have a go at the medications. good luck.

Michelle
I have had kidney disease for over 13 years and have manage to last this long without dialysis due to careful dieting and lots of exercise along with a very good specialist AND taking ALL my medication religiously. I know I would have been most unwell and on dialysis years ago if I hadn’t done all I could do to give myself the best outcome.
The hardest thing you have to battle is the loneliness of this first stage of kidney disease and feeling like nobody can really understand what you are going through which is where blogs like this site can be so useful. All the best. Stay in touch if you like.

I have comments on a few different topics:

Donor Financial Compensation.I am sorry, I do not agree with financial compensation for organ donation. Who would pay?

Organ Transplantation.
This is probably a favourite subject of mine and some probably think my views are a little extreme! As a consequence, I shall significantly restrain myself!

Should we have an “opt out” rather than an “opt in” system of organ donation, thereby making everyone a donor unless they say otherwise?
Then of course, if someone opts out, should they be entitled to receive and organ?
I think you can’t be half in and half out or have your cake and eat it too!
I am well aware that changes are being made to rules regarding permission to allow the harvesting of organs, however, I also understand nothing is REALLY going to change because relatives can still overrule your wishes! One problem for me is that I cannot see what it has to do with relatives, or anyone else for that matter.

Indigenous Health.
My views on this subject are also probably a little extreme!
I fail to understand why a separate health system needs to be set up for indigenous Australians. As far as I am aware there is nothing in the existing system that I am entitled to that an indigenous member of our society is not.

Early Detection of Kidney Disease.
Since the incidence of kidney disease seems to be on the increase, maybe GPs should encourage their patients to have periodic tests for kidney function. Perhaps the general population should also be encouraged to have some tests from time to time.

Other Stuff.
I think having a forum for this type of discussion is a fantastic idea. Although the above might appear a bit negative, I am not at all negative about organ donation and kidney health, I just have some strong views about the subject.

I have a very close relationship with kidney disease, my wife suffers from polycystic kidneys and until she received a transplant, for some years her life was just one big balancing act, especially with diet and lifestyle. Because of her almost iron discipline, she kept relatively healthy for some years by managing diet. Today things are fine, it is five and half years since the transplant and she looks and acts as healthy as ever. The only problem now is the constant monitoring and all the tablets she has to take!

John Kelly