Use your Kidney Blog and be heard

I believe that the government should compensate live donors for the following:

There are many patients I have known in the time my husband has been waiting for a transplant in the last four years, who were working in the beginning of their dialysis treatment and are now on part or on full pension benefits or passed away. This is because they are either too unwell to work full time or work at all anymore in some cases. You would think that the government would look at this without hesitation and say ‘We should pay live donors a 3 x month salary (a more realistic time for someone to recover enough to go back to work from organ donation surgery) instead of paying someone to have dialysis treatment, plus pension benefits’.

Not to mention the fact that some patients have to take alu-tabs which have a form of aluminimum to help bind phosphate from the body.
Its a catch 22 for these patients, because the longer they are on alu-tabs they will have long term damage that causes a form of dymentia/altziemers disease….And if they don’t take it, there is a high risk of heart disease due to the phosphate build up in the arteries. As a result, additional cost is spent on patients affected by these drug induced conditions from long term use of aluminimum medications which could have been avoided.

I am considered as a bit of a philanthropist by my family, colleagues and friends. I enjoy helping and giving to charities and have also volunteered my personal time for many events in recent times. I know that my husband and many other dialysis patients would have loved to help with many appeals, however, they do not have the luxury of having energy, better health or time to assist.

I want the government to support the payment of live organ donors. Believe me, the Federal Government’s budget would also feel a lot better.
We are supposed to be the lucky country with freedom. The government has a choice.

People who are on dialysis do not have a choice, they have a jail sentence which they do not know if it leads to a death sentence or the rare chance of a matching donor call.

Thank you for taking the time to read the above.

As a living non-related donor, I would have appreciated financial help from the government

I have had the wonderful opportunity to donate one of my kidneys to my husband very recently. My husband has been suffering from chronic renal failure over many years until recently when we found out that I could donate one of my kidneys to him. Fortunately, he hadn’t got to the stage of dialysis when we found out that we had compatable blood types. I had to go out of my local area to about 100kms away and to Sydney, 300kms away many times for tests which I lost pay for those days as I am only casually employed and don’t get any sick leave, as well, our stay away from our home was six weeks and my husband has had to take his sick leave of course, plus holidays that he had saved, plus he has had to now dip into his Long Service Leave. He doesn’t know at this stage how much longer he will be off work. The immediate outlay for accomodation during our stay after our operations (as we are from Central West NSW) and trying to keep up with mortgage payments is proving to be very difficult and stressful during my our recovery. We would have appreciated government compensation to help with the financial burden we have faced during this time as my husband would have been on dialysis before the years end and costing the goverment for many years until he was able to have a cadaveric transplant.

We hope that future living donors will receive compensation one day!

Thankyou

Financial assistance should be provided to live organ donors. It just makes sense.

To go through a painful, risky surgery, to give up a piece of your own body is not an easy decision. The decision is further complicated by the financial hardships donors face. For many people it is these financial problems that stop them from saving a loved one’s life. It shouldn’t be a choice anyone should have to face.

The cost of keeping six people on dialysis for a year is equal to the cost of supporting 250 live donors through the transplant period. That means the mere act of helping people through a hard time will save the government the cost of 244 dialysis treatments - That’s a lot of money!

I have had type 1 diabetes for 22 years and now have renal failure requiring a transplant. My husband is a potential and willing match. If I can have the transplant our lives will be back on track. The problem is money. My husband is the primary bread winner in our house. We rely on his income to survive. If he has to take weeks and weeks off work we will more than struggle, we may end up bankrupt.

With government support for donors I, and many others in this same position, will be able to afford a transplant and will be able to live normal, productive lives. That combined with the financial benefits to the government make this a simple decision.

John

Perhaps if you refer to Wayne Kemp’s entry under indigenous health, and consider how lucky you are that your words and actions are not judged by your skin colour, that people with your skin colour are represented positively by the media, and that you do not have to betray your cultural identity for respect then you may start to realise what it is like be indigenous. If you did not speak English as a first language, did not get a decent education, could not get a job, lived in primitive accommodation under the poverty line, you would understand how important a targeted indigeous health campaign is.

The issue of loss of income payments for live organ donors is one that I am very passionate about.

In March 2004 my husband was fortunate enough to receive a live donation of a kidney from his brother after nearly two years of dialysis and 13 years of living with chronic renal failure.

In my opinion live organ donation is the most unselfish and giving act one human being can do for another and the people who do this are incredible. Their generosity is outstanding and almost unfathomable.

Whilst live donors give this gift freely and do not look for financial compensation, I do not believe that they should suffer financial hardship because of their actions.

In our case, my brother-in-law who is married with four young children, lives about 1,000km from Sydney. In order for the transplant to take place, he had to travel to Sydney twice as well as several trips backwards and forwards to major regional hospitals for testing and medical care. He is not wealthy and the family needs his income to survive.

My husband and I were determined that he and his family should not be financially disadvantaged because of what he was doing. Therefore we met all of his out of pocket expenses which included travel, medical costs not covered by Medicare, accommodation whilst in Sydney after the transplant, lost wages during the transplant and recovery period.

Our costs were less due to the wonderful support shown already to renal patients through the provision of dialysis and care, however, there were some tests and a couple of hospital stays for tests and procedures required for transplant that were not covered by Medicare. There was also loss of income during the three months that my husband was unable to work.

The total of these costs was about $25,000. The cost of reimbursement of out of pocket expenses from my brother-in-law amounted to about $15,000 of this, a cost he could certainly not have afforded. We didn’t have that kind of money just laying around either and so borrowed against our house to fund the costs.

Please understand I am not complaining. No amount of money would have deterred me from having my husband free of dialysis and in the healthiest state he has been for 20 years. I understand that vast sums of money have been expended by the Australian taxpayer just to keep my husband alive so he could have a transplant, however, given that for every patient who is free of dialysis, the taxpayer is saving around $50,000 per annum, I think it is only fair that consideration be given to compensating these most generous human beings, live donors, for lost income. This program could easily be funded from the savings the government will see from the reduction in dialysis patients.

In recent times we have seen an increase in the number of people registering to become organ donors through the hard work of organisations like Kidney Health Australia, the David Hookes Foundation and others. Although this life saving work is vital, the benefits in some cases may not be realised for up to 50 years when a donors health fails and the organs become available. With a Donor Financial Compensation Program, this allows people to make this generous life saving sacrifice today to help restore the quality of life for loved ones.

A program that allows people the financial freedom to be able to donate an organ is the minimum we can do to assist people who make this life saving sacrifice to help loved ones in crisis. Currently not only do these people donate an organ, but they are penalised financially when they take time off work for an operation and a period of time to recuperate.

A Donor Financial Compensation Program to assist people making this sacrifice to ensure they can pay bills and continue to live while away from work is the least they should be able to expect for this selfless act. If a program like this makes it easier for people to donate and reduces the financial pressure on these people, then it can only be a good thing.

Steve

In Western Australia, the awareness of kidney donation between the living is coming of age. While hard to believe, it all began 25 years ago for my sister Susan and I. In 1980, at Sir Charles Gairdner Hospital in Nedlands W.A., I gave Susan my right kidney, I was 23 years old. Susan lost my kidney six weeks after our transplant, and I nearly lost Susan in the weeks that followed as she battled for life in Intensive Care. I had needed to use all of my sick and holiday leave from work for the transplant and could now not afford to take time from work to be with her. We were never offered counselling or support and it would be many years before I would fully understand the impact this loss had on both our lives.

Susan later received a kidney from a deceased donor which gave her another chance at life. She battled with many kidney related illnesses until her death in 2001. Susan died after two heart attacks and kidney failure. And I discovered that through life, years, loss and change, I had only ever been living in a revolving door, that had taken me right back to the start again. For I found that nothing had significantly changed for living organ donors in over 20 years, they were still very much on their own.

I ask the government and community to accept that these living donors are often in need of financial and emotional support and in the case of rural families, in need of accommodation.

Julie Edmonds

I 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

A Canberran live donor found considerable lack of support available immediatley after donating a kidney to his wife at RPA in Sydney. Upon their return to Canberra they were fortunate to have a neighbour who was able to help out with daily tasks including grocery shopping and transport. Perhaps this is an area that could be looked into.

Nick Farley