Letter to the Newspaper

[okarol]

Good advocating Murf!!

In the US the sad truth is that most of the deceased donor organs ARE used, yet it cannot meet the rising need. The surgeon told me that even if they were able to use every single deceased donor, (must be brain dead) there are only about 14,000 deceased donors every year. The waiting list for kidneys is up to 87,000 people, growing every day. This requires more living donors to help when possible.

[rsudock]

While I was waiting for a prescription at a local chemist, struck up a conversation with guy next to me. Gave him my story and it turns out that he works a s surgeon at Royal Perth Hospital. He related that in the last month he has thrown away 14 kidneys. I nearly cried.

I'm crying too!

There's a chart I found in a link on this blog post from IHD member Bill Peckham. For me, a 25-year-old male on hemodialysis, the expected remaining lifespan is 13.2 years, meaning it's expected I'll die before I hit 40 if I stay on hemodialysis (given average statistics - it helps a lot that I'm relatively healthy aside from my kidneys, so I'd probably outlive that estimate). If I have a transplant, the remaining expected lifespan goes up to 33.5 years. If I were healthy, it would be 49.3 years.

That's how much dialysis can take from your life expectancy.

OMG I shouldn't have read this...I never confirmed my suspicions about dialysis lowering your life expectancy...guess i wanted to stay in denial....

[cariad]

Well done, Murf! 

[murf]

Contacted the pollie today. Her secretary has promised that she will get back to me. Step 1 accomplished.

[murf]

Boy, do I feel let down, Contacted the politician who was most sympathetic and said it 's the sort of topic she would like to get to her teeth into. That was 2 weeks ago. Have written back to get some sort of feed back. Even if she said that at the moment she is too busy. Bur no reply. So after 2 phone calls and 2 e-mails, I am rather disillusioned. But I will not give up. Parliament goes into recession today so will wait to after Xmas. I will send my information to the Premier and if necessary, talk back radio. We must tell the world what dialysis is like. and how necessary an opt out system is to us. This might sound morbid, but if you have a cancer you get treated and either it works and you go into remission or if it doesn't, you pass away. Dialysis patients are in Limbo/purgatory. The disease just never goes away. No determination. Don't get me wrong. I feel very much for cancer patients and their treatment is horrendous but there is some sort of finality. The greatest frustration with dialysis patients is that it just never ends.

[natnnnat]

Don't give up murf just put it in your own diary to follow up regularly.  I think time moves more slowly in pollie land on some issues.  Ongoing determination is called for here.   

I wonder if you could add your energy / supplement your activities by working with Kidney Health Australia, as a person on dialysis who wants to talk about those experiences, maybe they would be interested in including your perspective in their campaigns? 
http://www.kidney.org.au/NewsEvents/MediaReleases/tabid/650/Default.aspx

Mainly, don't get discouraged by let downs, its all part of the race. 
    

[Henry P Snicklesnorter]

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[Riki]

This might sound morbid, but if you have a cancer you get treated and either it works and you go into remission or if it doesn't, you pass away. Dialysis patients are in Limbo/purgatory. The disease just never goes away. No determination. Don't get me wrong. I feel very much for cancer patients and their treatment is horrendous but there is some sort of finality. The greatest frustration with dialysis patients is that it just never ends.

I have two friends, (both former workmates) who have cancer. Both have suffered terribly over the years, including from chemotherapy. Both will die shortly.
They would trade places with you or me in a heartbeat.

He wasn't saying that kidney disease is worse than cancer, he was just saying that there is a finality to it.  Your friends know that they are going to die.  For some people, there is a peace in knowing that.  When it comes to dialysis, you could be on it for one day, or for 20 years. There's no certainty.  With most diseases, you either beat it, an live a healthy long life, or you don't, and you die.  With kidney disease, you go on dialysis and wait, and that's pretty much it.  I don't know if I'm going to die soon, but I doubt I will.  What I do know is that I'm going to be on dialysis tomorrow, and that is pretty much the only certainty I have in life at the moment.

[murf]

I have lost three work colleagues, a cousin ans a sister through cancer. As I repeat, the treatment is horrendous but there is some finality to it.

[Henry P Snicklesnorter]

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[Joe Paul]

Get shot by an enraged husband whose wife I have just seduced?