Letter to the Newspaper

[murf]

There is current debate imy home sate of Western Australia about adopting the opt out system for organ donation (like Spain) and a number of letters to the editor objected to this new sysyem on moral grounds of no Govt. being able to touch their cadaver. So I wrote a letter, myself, It reads:

Dear Editor,
I would like to give your readers a little insight into the world a kidney patient.

The diet restrictions are acute. Firstly, you are allowed about 500ml – 1L of fluid each day. This includes fluid from any food. You are restricted to eat the barest minimum of the following foods: nuts. dairy food, cake, muffins, meat, beans, most fruit, tomatoes,  potatoes, fish, eggs, mushrooms, cola, corn and oats. I know I have missed a number out that any dialysis patient would attest.
The actual process of dialysis is not much fun as well. For the patient on haemodialysis, you must front up to the hospital or centre three times a week for a four hour session. This occurs every single day of your life unless you are given a transplant. Firstly, the nurse inserts two very large needles into your arm. During the session, it is up to you how you occupy your time. Some read, some watch TV, others bring in their lap top. But whatever, you do become bored. However, quite often you ‘crash’. Because your body has reacted to the fluid coming off. Some have cramp which has been described as pain worse than having a baby. Most just feel bewildered and nauseous. You can expect to crash about at least once a fortnight. The other type of dialysis is peritoneal where 15l of fluid is inserted into you by a catheter. However, the risk of peritonitis is immense so many are not able to use this option.

The after effects of dialysis also need to be overcome. Apart from never ending fluid and diet restriction, all dialysis patients are constantly tired and are given injections of EPO (the one that is banned by the Olympics) to help in this regard. Most suffer low blood pressure which adds to the lethargy. Your urine dries up and you never go to the toilet. Friends find that hard to understand. We als0 deal with bouts of nausea, insomnia and restless legs.
There is a lot more to this insidious disease and any interested could look up http://www.ihatedialysis.com/ for a greater understanding.

I have been waiting five years for my transplant and although I would be immensely sorry for the family that gives me an organ in obvious tragic circumstances, I would always be eternally grateful. My heart sang when I heard that WA might adopt the opt out system. Every time the phone rings I think it might be ‘that’ call. Maybe, next time, I won’t be disappointed. My heart also sinks when letters to WAN objects to the new system on some sort of moral ground. I also became a little distraught when our Premier stated that we should think about it awhile before proceeding.

If only he knew.

Michael Murphy
U6/41 Bristol Av. Bicton
93482515

BTW, it was published.


Edited: Fixed subject line error - okarol/admin

[Riki]

awesome.. I think the opt out system would be so much better

[galvo]

Well done, Murph.

[Jean]

Good job, and good for you!!

[Bruno]

Good on you, mate. That's being an advocate for all those who don't have the words. I'm proud of you.
Another Aussie.

[Tracy]

Wow, you wrote a great letter!  I hope the best for you and your country!

Tracy

[MooseMom]

I really don't think the vast majority of people understand dialysis and it's effects.  And why should they?  If they have no experience with it, how could they possibly know?  Your letter helps to explain how hard dialysis is.  Keep explaining.  People need to know from what they may be saving themselves.

[Rerun]

Your letter was great.  I hope it gets published.  Let us know what other people say.

Rerun         

[RightSide]

Great letter.

But you left out the worst part.

The rule of thumb is that you lose 3 years of your life for every year you're on hemodialysis.  IOW, your life expectancy gets cut by two-thirds.

The only way out of that conundrum is a kidney transplant.

[jbeany]

 

[Riki]

Great letter.

But you left out the worst part.

The rule of thumb is that you lose 3 years of your life for every year you're on hemodialysis.  IOW, your life expectancy gets cut by two-thirds.

The only way out of that conundrum is a kidney transplant.

I didn't know that... does that mean that, since I've been on dialysis 8 years in total, that I've lost 24 years of my life?

[Restorer]

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.

[Riki]

That's scary.. is it just hemodialysis, or is it all dialysis?  Cuz I've only been on hemodialysis for 2 years

[Restorer]

That's scary.. is it just hemodialysis, or is it all dialysis?  Cuz I've only been on hemodialysis for 2 years

From the blog: As you look for the relevant age group remember, averages are made of extremes and that this is all based on the assumption that the treatment is incenter, 3 days a week. There are much better dialysis alternatives.

As he mentions, home hemodialysis or peritoneal dialysis can be much gentler on the body, and should come with a suitably longer life expectancy.

[Riki]

I was on PD 6 years, all together, I think.. and I'm getting up to 2 years on HD now.. Either way, I hope to live well past my early 40s, as that chart indicates.. whether I'm still on dialysis then or not...

[RichardMEL]

Great letter murf - and I am glad it was published!

The thing that confounds me about these people objecting to the opt out system on moral or religious grounds is that if they object, for whatever reason (and I am happy enough to respect anyone's personal views on this topic) that all they need to do is get off their backsides (ie: if they feel that strongly - do something!) and OPT OUT. Register that intention. Their wishes will be honoured, but it still allows the great apathetic mass (most of whom think it is a good idea to donate, but are just too lazy to actually register) to actually donate when the time comes.

All these objections are really saying, in my view, is that they're too lazy to actually register their wishes, and that they are "protecting" others who might feel that way.

Also what isn't clear from the discussions in WA - at least to me - is if family members can overrule this, as they currently do, so even if I am happy to donate but my family says "no" for whatever reason then it won't happen.

[Riki]

Also what isn't clear from the discussions in WA - at least to me - is if family members can overrule this, as they currently do, so even if I am happy to donate but my family says "no" for whatever reason then it won't happen.

That's the biggest thing I don't like about the system we have now, no matter what you want, your family can overrule you

[Hazmat35]

Of course it is a matter of each and every persons individual situation.  However, I think that if you give up, then you obviously won't last too long. 

As depressed as I am now, and as depressed as I get when I sit in that stupid chair, I can't stand to think that I am making myself miserable by being so upset and depressed.  I keep thinking "WHY ME".  MORE and MORE miserable I make myself. 

If you don't push yourself and make yourself take your meds, do your exercises, go to Dialysis like you are suppose to and follow your DR.'s directions, you CAN last a long time on Dialysis.  AGAIN, everyone is different and have different diseases and symptoms.  But you can NOT just sit down and take it!  You have to fight back! 

[murf]

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.

[RichardMEL]

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.

wow.. seriously? thrown away?? in the sense that family did not allow the donation? yikes!

[murf]

Ruchard,
Thats the lousy system we work with in Australia. If you ignore the box to tick on your license, you are indicating that your organs are not to be touched. The new system will work the opposite way. You have to tick the No box, otherwise, Doctors ave access to your organs. After that, the family can still say No if they so desire. Australia has the worst donor/population in the Western world.

[RichardMEL]

wow. I knew it was opt in, but I thought if you didn't register with medicare or on your license then your next of kin would be asked. Do you know if the family is still asked if nothing is indicated on the license or they're not registered.

Yeah normally I am very proud of Australia, but there are times where I feel let down by some things. This is one of them.

[murf]

Made my mind up to seek out a local politician to bring this cause to notice in Parliament. She is an independent who has a reputation for getting things done. Now to find the time between lung physio, cardiologist, renal nurse team, podiatrist, neph and my GP. But it will get done.

[natnnnat]

Good on you murf.

[Riki]

yeah.. keep us updated!