I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Henry P Snicklesnorter on May 21, 2010, 02:39:22 PM
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I have seen a lot of dialysis patients die. I also know a great deal of dialysis patients who are like you, able to live and function pretty well. I was under the impression, when my daughter was first diagnosed, that she would have a reduced life expectancy on dialysis. But, as many health issues as there are on dialysis, transplants are not risk free either. I still think of dialysis as life support, same with a kidney transplant, because there is no cure. I agree though, that news articles are often exaggerated and not well researched.
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Some of my friends also assumed I was not long for this world without a transplant. Those sort of perceptions in the community make a disease that can be debilitating enough on its own, doubly hard.
They have so many fears based on misinformation. The press has much to answer for that.
It's failing to keep up with the latest advances.
There have been a lot of advances in the last 20 years that make kidney failure easier to live with: Epogen/Aranesp instead of monthly blood transfusions; aggressive treatment of comorbid conditions like cardiovascular disease; NxStage; and a proliferation of dialysis centers which makes travel easier.
Now in the American press, I've seen several news articles giving favorable treatment to NxStage.
Perhaps part of the problem is the name of the disease: "END STAGE Renal Disease" sounds like you've got a terminal illness that is going to kill you in a year or two. The word "END" in that term doesn't mean end of life, it means end of your kidneys' useful function--but I think that's one of the misperceptions.
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If the news was all good, then the public would feel no urgency to donate. We are doing fine, so what's the problem.... I'd rather the news reports show the worst and I'll know the truth.
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I had also believed that the organ shortage would be eliminated if all people were donors at death, but this actually not possible. The donor has to die in a unique set of circumstances, well, not actually die, but have an accident or stroke that renders them brain dead and be on life support. Often, due to their injury or rescue efforts, both kidneys may not be viable. In the US there are approx. 11,000 such deceased donors each year, and of those about 8,000 make it to being a donor. With 90,000 patients currently waiting for kidneys, and more added everyday, the deficit will continue to grow. With an increase in technology where more use of non-beating donors and living donors, someday the list may begin to decline.
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When I was a kid and would get sick, my mom would say to me: "The only organs of yours I really worry about are your brain, your heart, and your liver."
She was right.
If your brain fails or your heart fails or your liver fails, you're in much more trouble than when your kidneys fail.
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I saw on the news last night that the first backpack artificial heart went on the streets. Now the heart people have something to fall back on.... just like us. Oh joy! I still think he would rather have a transplant than live on a machine.
FOX News is fair and balanced. :cheer:
I live on dialysis fine when there are no complications. But, there is usually something.
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It's also partially the fault of the various national Kidney Foundations that seem to push transplant over dialysis. In the effort to increase donors, these organizations need to denigrate those on dialysis as waiting for their "Gift of Life" with no hope otherwise.
I think Willem Kolff (known as the father of hemodialysis) already gave me the "Gift of Life."
8)
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I had also believed that the organ shortage would be eliminated if all people were donors at death, but this actually not possible. The donor has to die in a unique set of circumstances, well, not actually die, but have an accident or stroke that renders them brain dead and be on life support. Often, due to their injury or rescue efforts, both kidneys may not be viable. In the US there are approx. 11,000 such deceased donors each year, and of those about 8,000 make it to being a donor. With 90,000 patients currently waiting for kidneys, and more added everyday, the deficit will continue to grow. With an increase in technology where more use of non-beating donors and living donors, someday the list may begin to decline.
I presume the number of deceased donors you speak of are not pre-qualified as to suitability. If so, that equates to an availability of suitable kidneys of better than 70%.
The number of deaths in the US for 2009 was 2.4 million. If only 5% of these had suitable kidneys, (I suspect it would be far more than that,) that would mean 120,000 transplants could be done in theory.
With 90,000 currently waiting, the figures speak for themselves.
We have the means and the technology, what we are lacking, is the will.
No- 11,000 is the number of deaths that are suitable for organ donation(brain dead, living organs) 9,000 is the number that actually donate.
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Maybe bad press depends on where one lives.
Personally, I think organ donation would be more prevalent if newspaper articles didn't make dialysis look so good. I believe because people know the effectiveness of dialysis, people do NOT feel there is a dire need for organ donation, whether living or cadaveric. Maybe my views regarding press coverage are a minority point of view here on IHD, but I strongly believe the success of dialysis leads people to believe ESRD is no big problem. Since people know we are not going to die any time soon because of ESRD, they just don't see the need to step up.
With the number of people on waiting lists for transplants, there will NEVER be enough cadaver kidneys for the population in need.
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I saw on the news last night that the first backpack artificial heart went on the streets. Now the heart people have something to fall back on.... just like us. Oh joy!
The day will come when a NxStage machine can be shrunk down to the size of an implantable device and implanted in a human body. Then it will function like a real kidney.
Unfortunately, I'll be dead and buried by then.
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It's a surprisingly small number of deceased donors that can go on to donate organs. The potential donor must have been certified as brain dead in a hospital, a situation that normally occurs following severe head injuries, brain hemorrhage, anoxia (an interruption of the oxygen supply to the brain through drowning or cardiac arrest) or primitive tumors in the central nervous system. Donated organs and tissues must also be screened for infectious diseases such as hepatitis and HIV/AIDS. A history of drug abuse or other lifestyle risks may also rule out a donor.
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reading this thread reminds me of a recent newspaper article. A woman is suing the transplant md. Her husband received a kidney from a deceased donor only to lose him to cancer that came from the kidney. Just wondering how well they screen donors and kidneys... Just left me with a feeling of anxiety when I think of the future when I will go on a list...
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I'm sort of with Rerun on this. The negative view of dialysis probably makes a very small percentage of concerned and generous citizens actually sign up to be a donor - this can only be a good thing. If everyone felt things were honkey-dory on Dialysis they probably may not bother. While transplantation isn't for everyone of course, and has its own set of risks, successful transplants mean more freedom while reducing stress on the health system - and I believe that's a real reason why there's such an emphasis on transplantation.
Anyway in oz this week is Kidney Health Week. Recently they've been running these kidney health awareness ads here:
http://www.kidney.org.au/kidneydisease/checkmykidneys/watchonTv.html
I think they're a bit lame, but at least they're trying to raise awareness....
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That's a very cute commercial. What a good way to get the point across.
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I have to agree with Rerun et al on this. Trust me, I know how weird it can be to go through a little-understood procedure, know it that intimately, then read an article about someone else going through the same thing and sit there shouting "No, that's not how it is at all". Having read articles on transplant over the last 34 years, I can not once remember seeing a story and thinking that the journalist nailed it. Transplant stories tend to focus on the extremes - the profound gratitude, the transplants that never take, the unusual donations, the horrible complications, or perhaps my least favorite, the non-compliant patient who destroys their kidney so we can all wag a finger at his or her direction. None of these touched upon my experience, and I stopped expecting them to a long, long time ago.
Dialysis was hideous for me, both times. PD was not discussed for me the first time around, and once you have major surgery, it is no longer an option. I am extremely lucky in that I was only on dialysis a brief while on two separate occasions in my life, but then I could also argue that I am extremely unlucky in that my kidneys really did not have to fail, and I was far younger than most members here when I first started. We do get news stories here about people doing really well with dialysis, and the one popular line in these news articles that sends me insane goes something like "She doesn't let a little thing like dialysis slow her down." This is, to me, a slap in the face to those of us who just don't tolerate these treatments well. I didn't "let" dialysis slow me down, it did so without my permission and through no fault of my own.
Aside from possibly discouraging donations, I feel (though I have no corroborating data) that people who do as well as you, HPS, are fairly uncommon. (And I'm sorry to say so, but you are still in early days if this is going to be your treatment of choice.) I would not want the public to have the impression that dialysis is no big deal, doesn't interfere with your ability to work (um, it's hard enough to get disability right now, thanks very much) and therefore isn't something to be taken deadly seriously by both medical researchers and the general public, many of whom will be warned that their kidneys could fail if they do not follow certain precautions. These past few years, at least in the US, there has been unprecedented hostility toward people who are perceived as taking more than their fair share of public funds. Give the impression that dialysis is an easy solution for people in kidney failure and watch funding be sent elsewhere and elected officials jump to promise to crack down on these lazy dialysis patients who "claim" they cannot work. As has been said many times in this country, it's not the reality that matters, it's the perception.
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I honestly don't feel we get enough of any type of press. I know this may sound horrible, but I was really hoping a big celebrity would eventually get kidney disease so that the our cause would be more publicized. I mean, sad but true.
Most people don't even know what dialysis is. Everyone knows what chemo is. The sad fact is that people on dialysis are at great risk. Can they live on a machine for years? Yes, probably but there are a lot of complications that come with our disease. Shoot, I've been hospitalized and been placed in intensive care many, many times. I've had heart issues from this disease. I have had shortness of breath. I watched two different men die right next to me in their dialysis chairs. This is scary stuff. There is no cure for our disease. I thank the Lord that of all the disease out there, I got one that there is a treatment for but I also am smart enough to know that I can die from this and when you have been sick for more than half your life, it IS hard and emotional and it just SUCKS! I'm 36 years old and I don't even remember what my life was like before finding out I was ill. I was 15 when I found out I was sick.
I just wish people knew more about this disease and realized that it is not fun being tied to a machine and not everyone feels comfortable having a puffed up stomach with a tube inside of you. Especially when you're young. Shoot, I am still hoping to get married someday. But again, who wants someone who is always sick? I learned the hard way that people don't like drama.
Just my feelings on the matter...
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I saw Natalie Cole on Larry King Live (I hardly ever watch LKL, and the fact that I happened to catch this particular episode is ironic) not too long ago, and she was talking about how she was on dialysis and was hoping to be transplanted. I have read that she has since been given a kidney. Alonzo Mourning of the NBA retired not long after being diagnosed with fsgs; he received a transplant from a cousin and returned to the NBA. This was a widely publicized story.
You ever notice how when you learn a new word, you start seeing it everywhere? CKD/dialysis/transplantation seems to follow that same edict so often that it has become a standing joke between my husband and me. At first I thought it was just me; I couldn't turn on the TV or read a paper without seeing some sort of renally related story. But now, even my husband remarks on how often he notices these types of stories in the media. I can't honestly agree that kidney disease is rarely mentioned in the press. I seem to see it everywhere.
I personally think that as our population is stricken with more and more cases of obesity, high blood pressure and diabetes, renal disease will soon be front and center. More and more families will have members struck with CKD/ESRD. It's just a matter of time. You can't spin ESRD, and you can't escape the fact that not everyone tolerates dialysis successfully
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Cariad makes a good point regarding the general perception of people who are on any kind of "handout". I don't quite understand what it is about the US these days, but it does seem to be true that anyone who needs any sort of assistance reliant on the public purse is deemed somehow unworthy and even un-American. There is this underlying, corrosive idea that any financial assistance (like Medicare and ESRD) given to you means that something is being taken from me. We seem to be very generous to those in need who have a face and an easily sound-bit story. News reports of people in trouble because of a tornado, an earthquake or a rare disease will often bring support and money. But defining an entire section of people as disabled or "underprivileged" is the kiss of death. When the likes of Rand Paul talk about the burdens on business from the Americans with Disabilities Act and the desire to have said businesses define who is disabled and who is not, well, you have to wonder how pervasive is this view.
HPS, if dialysis is working for you, then you just go out there and enjoy your life and celebrate your good fortune. While I suspect that you may be an anomaly, I am hoping that you are not. I am also hoping that as more and more people succumb to ESRD and require dialysis, there will be greater technological advances that will make dialysis easier, more efficient and more affordable. Necessity is the mother of invention...
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Thankfully there are options for kidney patients to choose from.
Never say never. If it ain't broke, don't fix it, but if you want a different treatment, you have a choice.
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Moosemom, boy do I agree with so much that you have said. I'm so sick of people complaining about funding for the needy. Whether it be the poor or disabled or whatever. I wish they'd just be glad that they are healthy or that they are doing well enough that they are not struggling financially. I'm a taxpayer who has been working since I was 16 years old. The only time I didn't have a job was the five years I was on dialysis. And during that time I took college courses and got an education so that I was able to be an asset to society when I did get better.
Like I enjoy being out of work and having treatments three times a week. It's so much fun waking up at night with heart palpitations or having my ankles swell so bad that I can barely walk. I would trade all of that in a heartbeat with anyone who thinks being disabled is fun.
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There may be "options" for kidney patients, but none of them couldn't stand a lot of improvement. Actually, for many patients, there ARE no options when it comes to choosing a modality. I've read posts from many IHDers who explain how one modality is impossible for them for whatever reason. And transplantation is not really an "option" because it is a scenario that is utterly out of your control. Whether or not you even get a chance at a transplant depends ENTIRELY upon either the beneficience, the decisions or the death of others.
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Thankfully there are options for kidney patients to choose from.
Never say never. If it ain't broke, don't fix it, but if you want a different treatment, you have a choice.
Unfortunately, for most people, the longer you battle kidney disease, the more your options shrink. My peritoneum is too damaged for PD, my veins are too crap for a fistula and I already have had two access sites ruined. I am so fortunate that my PRA was low enough for transplant because I certainly did not like my odds on hemo.
Henry, in case I did not make it clear, of course your success should be celebrated. I cheer your success. :cheer: :cheer: :cheer: I believe we all do. Your attitude is lovely and infectious. And I see no reason why you cannot be our next Bill Peckham or Zach or Monrein or Richard or any of the others on here that rock (or rocked) dialysis. I don't think you have to resign yourself to a shorter lifespan, there is really no way to know how this will play out until it happens. It's wonderful that dialysis brought you so much. I threw up every day, stopped growing (I am three inches shorter than my next-shortest sibling) and was emaciated. Whose experience is the "real" experience that the press should report? I think that's why it is important to remember that any of these human-interest stories are just giving us a glimpse of one outcome out of a nearly endless spectrum of possibilities. Yet, I know that when I read stories about issues that I know little about, I am as guilty as anyone of thinking "so that's what that's like.... for every single person." It's intellectual laziness I suppose, but that seems to be how most people tick and why both the worst and best case scenarios can really confuse the public.
(I also make the point that I am one of the luckier ones and that there are many who do it tough on dialysis.)
Yes, this is just like me and my transplant experience. I had issues, but not really health issues, and when I am having one of those lightweight conversations with people who haven't a clue and don't really want or need to hear the full explanation anyhow, I just say I had a transplant and I was spectacularly lucky with it - unlike so many. My issues were almost entirely centered around the abuse that I endured from my parents and the doctors. So while on paper I am a "success story", there are reasons why I do not view the whole experience that way and would never be comfortable in letting someone retell mine as a fairy tale.
I'm glad you're sharing your story with us. I am sure you are giving hope to more people than you can imagine. :2thumbsup;
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Oh Cariad baby you need to strike my name from THAT list. I don't rock dialysis at all, and I'm sure as hell pining away for that call!!! :rofl; I wear my IHD t shirt with such pride that my neph comments when I'm NOT wearing it saying "Yeah, I know you HATE dialysis!" :rofl;
Having said that I absolutely respect Henry's choice, and it is his to make totally. It's an informed choice, and obviously he's free to change his mind at any time as circumstances may change. At least, as karol said, options and he's chosing a path that works for him. i for one totally approve of this. I'm certainly not going to say "what are you crazy not going for transplant" or anything like that. We each need to take our own path in life. Besides, if he doesn't want a kidney that's one less person I have to compete with for the next organ!! (yes, it's ALL about me!!! >:D >:D >:D >:D >:D >:D)
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Did I hear my name mentioned?
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Did I hear my name mentioned?
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I do believe you did. Why am I not included in this illustrious list? Huh? Huh? :rofl;
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Oh Cariad baby you need to strike my name from THAT list. I don't rock dialysis at all, and I'm sure as hell pining away for that call!!! :rofl; I wear my IHD t shirt with such pride that my neph comments when I'm NOT wearing it saying "Yeah, I know you HATE dialysis!" :rofl;
:rofl;
Anyone who wears an I Hate Dialysis tee to the nephrologist's is rocking something. :cheer:
At your request:
Richard (who is saving his best to rock that future transplant)
:oops;, Zach. Didn't mean to start your ears burning....
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Well I also have a t shirt that I had made up that says "I hate dialysis... but I love my dialysis unit" on it. The staff love it and people always ask where I got it.
:shy;
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Well I also have a t shirt that I had made up that says "I hate dialysis... but I love my dialysis unit" on it. The staff love it and people always ask where I got it.
:shy;
Let's see it! :pics;
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I haven't been on the site for a very long time. I am flat out with work - working 12 hours a day. I go to be for a few hours, get up at midnight, do dialysis and then catch a little shuteye before heading off to work again. I have to say that all the negative press just depresses me. Having worked as a journalist for the major papers here in Sydney I know that they are never going to ever say anything positive about dialysis. I am in no hurry to even think about a transplant. I have been on dialysis now almost two years and I am really well, and active and having few to no problems.
I still have some residual function and I believe that is because I only did short hours in the first year. I fought every step of the way not to do long hours when I still had residual function and it has worked for me. The more exercise I do, the more my residual function kicks in. I still only take off 500mls of fluid each treatment. Don't let nurses push you into taking off more fluid than you believe is necessary. Fortunately I do dialysis at home so I only take off what I want to take off.
After reading what Kickstart has been going through, I honestly believe we get better treatment here in Australia. We do not have to have a partner to do dialysis at home and most times I am on my own and better for it. Nice and quiet in the middle of the night.
I think Henry P Snicklesnorter is right but also know that dialysis options and care are much better here in Australia and we generally are able to get more dialysis which also makes for a healthier existence because we are able to do it solo at home. Henry sounds very positive and like me probably hates the negativity surrounding dialysis. And because you manage on dialysis doesn't mean most people think it is a walk in the park. Whether you are not dealing with dialysis or dealing with it well, my experience is that most people admire anyone who has to deal with it at all. I have had numerous offers from friends to donate. I am with Henry. They have two healthy kidneys and they should keep them!
But I also agree with O'Karol, never say never. I feel well know, but who knows down the track. I might be begging for a transplant but for now I have never felt healthier or better and I still believe that is because I have the option of doing it at home alone and I can do as much or as little and I don't have someone standing over me making out they know my body better than I do. I just wish more of you guys in America could do it at home so you don't have to confront crap every time you go into your clinic. It would be a breath of fresh air for you.
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Let's see it! :pics;
OK only because you asked nicely I took some quick pics....
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LOVE the shirt RM. And Lucinda, so great to hear from you and best of all to hear that you're doing well. Cheers.
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No, apparently the govt had a bad issue with a previous machine (over a decade ago) and has decided that this type of haemo isn't worth the cost as yet and needs a lot more evidence before it will even consider it. There is a Dr/Prof in Vic who is studying it but as well as we all know the Oz govt is very slow to make decisions like this. We could well be waiting for quite a long time for Nx Stage.
It's failing to keep up with the latest advances.
There have been a lot of advances in the last 20 years that make kidney failure easier to live with: Epogen/Aranesp instead of monthly blood transfusions; aggressive treatment of comorbid conditions like cardiovascular disease; NxStage; and a proliferation of dialysis centers which makes travel easier.
Now in the American press, I've seen several news articles giving favorable treatment to NxStage.
Perhaps part of the problem is the name of the disease: "END STAGE Renal Disease" sounds like you've got a terminal illness that is going to kill you in a year or two. The word "END" in that term doesn't mean end of life, it means end of your kidneys' useful function--but I think that's one of the misperceptions.
Got to agree 100% with your comments Rightside.
With regard to NxStage, I hadn't heard the term until I started reading this forum. I gather the government is evaluating it with a view to possible introduction here at some future time.
EDITED: Fixed Quote Error - Bajanne, Moderator
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Fab shirt, Richard. I was hoping to see you model it, though....
Such a considerate sentiment for the staff that you so clearly respect and appreciate. :2thumbsup;
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lol you do not want to see me in it - that would ruin the picture!!!!
:shy;
I was going to get all the names of the staff members on the shirt, but they change every so often and I didn't want to leave anyone out and have people get offended or anything, so I decided the big smile would be better :)
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I love the shirt - but it'd be better with you in it! :-*
:shy;