"Why can’t I be a donor for my husband?"

About: Sir Charles Gairdner Hospital / General medicine

(as the patient),

In 2015 my husband had a heart attack. As a result he needed a stent put in his heart and part of this process requires doctors to put dye in his bloodstream. Sadly he was the 1% of the population that can get ‘contrast induced nephropathy’ (CIN). This is a higher risk with diabetics and patients who have a degenerative heart conditions in their family as my husband did. He now has irreversible kidney damage and his kidney function deterioration over the past two years has been monitored by specialists at the Renal Clinic at Sir Charles Gairdner Hospital.

During the course of this time my husband’s kidney function has rapidly declined. My husband is on medication for diabetes, which again unfortunately has increased the reduction of his kidney function. I asked the doctors to let me know when his kidney function got to a critical point, as I was willing to be a ‘living kidney donor’ for him; we have been married for 22 years.

I gave the hospital the relevant documentation and information required by my GP, etc. to be a ‘living donor’ and from what I understood I was compatible. However, I have been informed by the doctors that I am unable to donate a kidney because I am a diabetic and I am an Aboriginal; and Aboriginal donors with Diabetes are more at risk of renal failure. I was also informed that this was why I was not considered a good enough candidate. Why would they allow us hope, by beginning this process and then tell me this?

I have asked for a written explanation for why I am unable to be a donor, but haven’t received a response or an understandable or reasonable explanation. I don’t smoke and my husband and I have been non-drinkers for more than 2 decades; as far as I am concerned there is no legitimate reason why I can’t donate a kidney to my husband.

My husband’s kidney function is now down to 10%, and we have other family members who would also like to be considered as ‘living donors’ for him, but why would they go through the testing to be told they can’t be donors because they too are Aboriginal.

I have done much research through the ‘Kidney Health Info Service’ (http://kidney.org.au/) and the ‘Menzies School of Health Research’ and how statistics show a far shorter life expectancy for Aboriginal people once they begin dialysis than non-Aboriginal Australians.

Dr Paul Lawton, Australian Kidney Specialist at the Menzies School of Health Research, also said “Indigenous patients are up to 10 times less likely to be added to the kidney donation waitlist than non-Indigenous patients”.

(http://www.abc.net.au/news/2017-12-13/organ-transplant-system-tipped-towards-non-indigenous-patients/9252076)

My husband is still quite a young man and a talented artist and I believe he has so very much more yet to offer in his life. From the information I have gathered, I believe that very few Aboriginal people are either able to be donors or able to have a transplant. Even though a large percentage of Aboriginal people require dialysis and therefore need transplants, why are we unable to be donors?  

Speaking on behalf of the Aboriginal community in Australia, my husband and I feel discriminated against. I would greatly appreciate a comprehensive explanation for why I cannot be a donor for my husband despite being a diabetic and especially because I am Aboriginal.

Our family and I desperately want to help my husband and I don’t want to lose him; I feel that the Aboriginal community deserves more of an explanation for not be able to be donors other than – we are Aboriginal.

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from Jennifer Francis, A/Director Safety, Quality & Performance , Sir Charles Gairdner Hospital, North Metropolitan Health Service

Dear Living donor,

Thank you for taking the time to share your story with us. I am very sorry to hear of your husband’s ill health and the impact that it is having on him and your family. Chronic illness is complex and often very difficult to manage, and I can understand that you and your family want to do everything possible to help him. I completely appreciate your need to fully understand the reasons why you are not able to be a ‘living donors’ and I am sorry this has not been explained to you as you have requested.

So that I am able to help you with this, I encourage you to contact the Patient Liaison Service at Sir Charles Gairdner Hospital on (08) 6457 2867 or by email at PatientLiaisonService.SCGH@health.wa.gov.au so that we can arrange a Renal Physician to discuss this with you.

Kind regards

Jennifer Francis

A/Director Safety, Quality & Performance

Sir Charles Gairdner Osborne Park Health Care Group

On behalf of

Amanda McKnight

A/Executive Director

Sir Charles Gairdner Osborne Park Health Care Group

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Recently read

Shift-Alt-R