Kidney disease gets a lousy press.

[Henry P Snicklesnorter]

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[okarol]

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.

[RightSide]

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.

[Rerun]

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.

[Henry P Snicklesnorter]

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[Henry P Snicklesnorter]

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[okarol]

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.

[RightSide]

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.

[Henry P Snicklesnorter]

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[Rerun]

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.   

I live on dialysis fine when there are no complications.  But, there is usually something.

[Zach]

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."

[Wallyz]

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. 

[Henry P Snicklesnorter]

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[Sunny]

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.

[RightSide]

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.

[okarol]

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.

[marcy996]

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...

[RichardMEL]

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....

[Sunny]

That's a very cute commercial. What a good way to get the point across.

[cariad]

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.

[Beth35]

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...

[MooseMom]

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

[Henry P Snicklesnorter]

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[MooseMom]

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...

[okarol]

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.