I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: murf on October 28, 2010, 03:57:15 PM
-
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
-
awesome.. I think the opt out system would be so much better
-
Well done, Murph.
-
Good job, and good for you!!
-
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.
-
Wow, you wrote a great letter! I hope the best for you and your country!
Tracy :)
-
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.
-
Your letter was great. I hope it gets published. Let us know what other people say.
Rerun :yahoo;
-
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.
-
:clap;
-
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?
-
There's a chart I found in a link on this blog post (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/03/dialysis-lifesp.html) 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.
-
That's scary.. is it just hemodialysis, or is it all dialysis? Cuz I've only been on hemodialysis for 2 years
-
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.
-
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...
-
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.
-
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
-
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!
-
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.
-
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!
-
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.
-
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.
-
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.
-
Good on you murf.
-
yeah.. keep us updated!
-
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.
-
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 (http://www.billpeckham.com/from_the_sharp_end_of_the/2008/03/dialysis-lifesp.html) 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.... :embarassed:
-
Well done, Murf! :cheer:
-
Contacted the pollie today. Her secretary has promised that she will get back to me. Step 1 accomplished.
-
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.
-
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.
:beer1; :boxing; :cheer:
-
.
-
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.
-
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.
-
.
-
Get shot by an enraged husband whose wife I have just seduced?
:oops;