The gift of a lifetime

To all my family and friends…

I am contacting you all to ask you for your help.

This is not something I usually do, but I have realised that life is too short and I need to put my pride aside and learn to reach out more.

You may or may not know but for the last 12 months I have been battling an inherited Polycystic Kidney Disease (PKD), and am currently in end stage kidney failure. To date, I have lost a total of 52.5 kgs and as a result have been accepted on the Deceased Donor Kidney Transplant Waiting List.

My wife Louise, Brother Vincent and Sister Charlene have been going through the process for them to donate me one of their kidneys but unfortunately, they have all been ruled out due to other medical conditions.

Louise was very close and only had one more test to pass (it took her 12 months to get her this far in the process).

HOW YOU CAN HELP?

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I have made this event public to try and spread it to as many people as possible, please feel free to share it.

I am going out to all my family and friends to:

- Let you know about my situation;

- See if you or someone you know would be willing to donate a kidney to me;

- Maybe you are willing to help me through my Give a Little Campaign.

WHO DO YOU CONTACT?

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If you have any further questions or would like to look at going through the testing process, please make contact with me on:

jamespratt@jamespratt.com

And I can put you in contact with my Living Donor Liaison Coordinator.

GIVE A LITTLE CAMPAIGN

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One of my best friends, Yianni Souvatzoglou who lives in Hawaii and owns and runs his own business called Hi5 Tours Hawaii www.hi5hawaii.com, has kindly offered to donate one of his kidneys.

However, although the testing to be a donor in New Zealand is free, there is a substantial cost in Hawaii.

The give a little campaign is to help raise funds so Yianni can go through the testing process in Hawaii, including flights to New Zealand for operation and while he recovers. Surplus funds will be used to help with other suitable donors and private donor testing and donor recipient support management.

The testing process in New Zealand generally takes between 8 - 10 months due to the entire process being free and having to work within the existing public health system.

However, when done privately, the testing process is considerably a lot quicker.

WHAT ARE MY TREATMENT OPTIONS?

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I currently have the following two options for treatment:

1. Deceased / Living Donor Kidney Transplant;

2. Dialysis.

The best treatment for many people with kidney failure is a living donor transplant before dialysis is needed.

A living donor is when a living person chooses to donate their organ to someone in need of a transplant. There were 84 Living Donor Kidney Transplants in 2018.

A deceased donor is someone that has undergone a fatal incident; remains ventilated in hospital with a non-survivable brain injury and has previously provided consent to donate their organ(s) to someone in need of a transplant. It is because of this specific concise set of exact circumstances means most people will never be able to donate their organs, even if it was their wish. There were 99 Deceased Kidney Donor Transplants in 2018.

There are currently 422 people waiting for a kidney or pancreas as of March 2019. While New Zealand’s deceased organ donation rates are improving, they are still relatively low compared with other countries.

One of the main differences between a Living Donor and a Deceased Donor is there is a waiting list with people who have been waiting for over 10 years to receive a kidney. This waiting list continues to increase yearly. Sadly, some of those people will die waiting, while others will continue to lead lives restricted by long-term treatment.

The deceased donor transplants are allocated to people on the waiting list according to a number of rules.

Patients who have a close match to the donor are given first priority, no matter how long they have been on the waiting list. About half of all kidneys are allocated to patients this way.

The other half will not be such a close match to anyone waiting on the list. In these cases, time spent on the waiting list plays a bigger role, however waiting time will not be counted until you have started dialysis.

WHAT ARE THE ADVANTAGES OF A LIVING DONOR TRANSPLANT?

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For the person receiving the kidney the advantages of a living donor transplant are:

- Having a transplant before the need for dialysis;

- The operation can be planned for a time that suits the potential donor;

- A better success rate: usually works straight away and lasts longer; and

- A longer life expectancy than when living on dialysis.

In fact a leading cause of death of people while on dialysis is due to Heart Disease as dialysis takes a huge toll on the heart and forces your heart to work harder. There is also less blood flow and oxygen going to the heart. As your heart is forced to work harder, it begins to thicken and grow larger. Ultimately your heart loses its ability to pump blood well enough. This leads to heart failure and death.

This is another reason why I am seeking a living donor to avoid dialysis.

WHAT IS POLYCYSTIC KIDNEY DISEASE (PKD)

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PKD affects approximately 6.5 million people globally and is the most common inherited cystic kidney disease, which causes thousands of cysts (fluid filled sacs) to grow in the kidneys.

The cysts grow gradually over time, enlarging the kidneys and making it harder for them to function properly, until they eventually fail.

Click the below link for more information on PKD.

www.pkdaustralia.org/what-is-pkd/

HOW IS POLYCYSTIC KIDNEY DISEASE (PKD) AFFECTING ME?

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As a result of PKD, my health has slowly deteriorated to the point that I am now in end stage kidney failure (I have 5% of normal kidney function at present).

I have had to close my IT for Charities business and am currently unable to work due to the following on going symptoms:

- Chronic pain due to the cysts pushing against my organs;

- Headaches;

- Tiredness;

- Lack of concentration;

- Shortness of breath;

- Loss of appetite;

- Nausea and vomiting; and

- Restless legs, making it difficult to sleep.

My medical team has been working with me to help alleviate these symptoms, but for every drug you take there is a side effect that may mean you need to take another drug to combat this.

I also have a rather strict diet, not due to having to lose weight, but to help my kidneys to control body chemistry.

Kidney disease damages the kidney filters so that they can’t remove wastes and water. When this happens, the body fills up with excess fluid and wastes that can’t be removed by the kidneys.

Click the below link for more information on kidneys:

www.kidneys.co.nz/resources/file/kidneys_and_kidney_disease.pdf

THINKING ABOUT BEING A DONOR?

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There are two types of living donor transplants in New Zealand;

1. Living related: blood relative such as a brother, sister, cousin.

2. Living unrelated: husband, wife, partner or friend.

The way people decide to donate can vary from person to person.

Some people make the decision instantly with few worries or concerns. Other people go through some soul-searching and will talk with close friends or family before deciding whether to donate.

It is normal for some people to be afraid of donating a kidney.

People who decide not to donate may experience guilt. People should not, under any circumstances, feel that they have to start the process to donate. They can also change their mind at any stage during the process and decide not to donate.

The only “right” decision is the one that the potential donor feels comfortable with.

Anybody in good health with two normal kidneys may be able to give one of their own kidneys to another person (be a kidney donor).

A donor can continue to live a long comfortable healthy life on one functional kidney with no detrimental consequences or side effects.

A donor doesn’t necessarily need to be the same blood type (though better genetic matches between donor and recipient provides a lower risk of organ rejection).

People who donate a kidney will be entitled to compensation for loss of earnings for up to 12 weeks while they recover following donation surgery.

Click below for a Factsheet on thinking about being a donor:

www.kidneys.co.nz/resources/file/thinking_about_being_a_donor.pdf

BENEFITS OF GOING THROUGH THE TESTING PROCESS?

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The entire testing process is completely free and you are assigned a transplant coordinator from your local DHB who can answer any questions that you may have so that so can make an informed decision about having more tests. This conversation is strictly confidential and is not shared with me (the potential recipient).

You will see a doctor for a check on your medical history and have a physical examination, to ensure that there are no unknown health problems. A series of blood tests and x-ray tests, as well as an ECG to check kidney function, liver function and rule out hepatitis, heart disease, lung disease and past viral infections.

As we found with my Brother and Sister, as a result of going through the testing process, they were alerted to medical conditions they had which they didn’t know about and are now able to make life changes to ensure their health is better maintained.

Although the testing process can take between 8 – 10 months, it’s not a complicated or drawn out process – The testing (initial screening and blood / urine tests) itself over the course of time probably all rolls up to be just several weeks of commitment. Half the process is the appointment setting and processing of test results etc.

It is important to note, there are a number of tests and you only have to fail one of them to exclude you from being able to donate. This is done to ensure that there is absolutely no risk to you in donating and me in receiving.

WHO DO YOU CONTACT?

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If you have any further questions or would like to look at going through the testing process, please make contact with me on:

jamespratt@jamespratt.com

And I can put you in contact with my Living Donor Liaison Coordinator.

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Thanks again for taking a few minutes to read my note.

I know your time is precious and it means a lot to me that you have read this.

Much love to you all

James