Need your input about dialysis and the news media

[okarol]

I was recently talking to a journalist and mentioned that I would like to a story written about dialysis.
Her question to me was: Is there a story to be written about dialysis that hasn't been done yet?
So I ask you, what would your answer to her be?

[thegrammalady]

i would ask exactly what she means by that. a story about some well known person or their child who needs transplant or to go on dialysis, isn't a story about dialysis. its a story about that person who has a medical need. they never know what dialysis is. most of the population has no idea about dialysis, how could there possibly be stories about dialysis already done. i'm almost willing to bet the farm she doesn't even really know.

[BigSky]

More stories need done on more dialysis time 4 days week and to loosen up on financial guidelines to let people actually work instead of being relegated to poverty to qualify for programs, also a push for transplant drugs to be covered for life of transplant instead of only 3 years.

[goofynina]

Do they want it on Dialysis itself or on a person's experiences on Dialysis.  I think if they try to do it on an individual's experience it would be inaccurate because so many people or so different, some have no problems with dialysis while the other has all the problems in the world.  I think there needs to be specifics on what they are actually needing for their book (i'd send them to Zach first of all)   just my 

[okarol]

Do they want it on Dialysis itself or on a person's experiences on Dialysis.  I think if they try to do it on an individual's experience it would be inaccurate because so many people or so different, some have no problems with dialysis while the other has all the problems in the world.  I think there needs to be specifics on what they are actually needing for their book (i'd send them to Zach first of all)   just my 

Gooofynina, this is a newspaper journalist. She just wrote a good story about living donors, and we were corresponding, and that's when I said I would like to see a story about dialysis. You're right, it's difficult to get an accurate picture of what it's like for dialysis patients because the experiences vary immensely.

[angela515]

I agree, there are many stories written about people's experience on dialysis but not about dialysis itself.

[goofynina]

Do they want it on Dialysis itself or on a person's experiences on Dialysis.  I think if they try to do it on an individual's experience it would be inaccurate because so many people or so different, some have no problems with dialysis while the other has all the problems in the world.  I think there needs to be specifics on what they are actually needing for their book (i'd send them to Zach first of all)   just my 

Gooofynina, this is a newspaper journalist. She just wrote a good story about living donors, and we were corresponding, and that's when I said I would like to see a story about dialysis. You're right, it's difficult to get an accurate picture of what it's like for dialysis patients because the experiences vary immensely.

Well, i say bring her on girlfriend, i am willing to share any experiences i have had both good and bad with anyone who asks (well, re-dialysis that is) if you want to know about my other experiences, sorry, your gonna have to rent the movie   (must be 18) 

[kitkatz]

I think that each individual experiences dialysis differently. Maybe a story about coping with the trials of dialysis would be better. We have many trials. There is diagnosis, treatment, diet, lifestyle changes, machines, dialyzers, techs, nurses, life in general, friends reactions, and etc.

[MyssAnne]

Everyone's experiences are different, I would like to have a story of the differences in dialysis i.e. hemo vs. pd, but also something about the transplant medications not covered after the first 3 years. Heck, that's a story too, the Medicare story, and how to get on it, and what it, and what your personal insurance covers.

[thegrammalady]

Everyone's experiences are different, I would like to have a story of the differences in dialysis i.e. hemo vs. pd, but also something about the transplant medications not covered after the first 3 years. Heck, that's a story too, the Medicare story, and how to get on it, and what it, and what your personal insurance covers.

that's exactly what i meant too. most stories are about so and so has kidney problems and it doesn't tell what that means. the world has no idea..

[jbeany]

The stories I do read don't seem to tell much detail.  It's always "Patient saved from slow death by transplant."  Then they rave about how lucky the transplant patient is.  They never talk much about what it's like on dialysis.  No one mentions the tremendous number of people who don't qualify for a transplant, and how they cope.  There's no push for more research, like breast cancer stories.  There is little info about the financial problems, or transportation problems, or the lack of choice in picking a center.   What about the lack of info given to the patients themselves?  Most of the patients on my shift hadn't even heard of home hemo until I started talking about it.  Why isn't someone doing an expose on the way patients are consistently uninformed about their options?  I read more and more about how places like Shriners carefully develop a treatment program for each patient, working out individual doses of chemo at exactly the right time.  But dialysis patients are still being treated to a one-size-fits-all approach to treatment - 3x a week is what you get, and better hope it works for you, because they aren't paying for anything else.  Never mind the studies that show the health benefits of more frequent dialysis - you can only get that if you can keep enough insurance to pay for it.  Epo ranted about how Davita treats their patients - where is the story about big business putting profits before their patients health?  I've seen stories about how the New York law kept for-profit corporations from opening dialysis centers, but the only angle they cover is how that limits the number of centers.  Plugger is working to get techs certified - why isn't that debate being covered?  I wouldn't have known about it if he hadn't posted on here.  Apparently, our health is just not worthy of national news coverage.  What about Bill Peckham's concerns about bird flu?  I've seen articles about it - it's getting worse, and they expect it to hit America within the next 10 years, but no mention is made of the effects it will have on the weakest in the population.  There are plenty of unwritten stories about dialysis - but when is the last time anyone went to a center to talk to the patients and find that out?

[George Jung]

I would first say "DO another one."  People need to be reminded about things they don't face everyday and there cannot be enough awareness at this point in time.  Also, how about doing a story on treatments for chronic illnesses with a attention/highlight on dialysis and it's uniqueness describing various treatments, recognizing the effort patients put into it.  The same story can be told with a unique approach without making it overkill.  Before I was affected (even after diagnosis) I was unaware.  Just my thought. - George

Is that Affected or Effected?  I saw a bit of that Grammarlady on Oprah and now I can't remember which is which.

[angela515]

Is that Affected or Effected?  I saw a bit of that Grammarlady on Oprah and now I can't remember which is which.

The majority of the time you use affect with an a as a verb and effect with an e as a noun.

I also seen her on Oprah, I never miss Oprah. 

[George Jung]

Was it majority of the time or all of the time?  Thanks


ps - I want to clarify that I don't "watch Oprah".  I happen to catch a bit here and there and thats it.

[angela515]

Was it majority of the time or all of the time?  Thanks

Majority, about 95%... there are special times when they are switched... don't ask me what those times are, 

[bluedove57]

I know most people don't understand what dialysis is all about. We experience it all differently. I believe a good article explaining dialysis and problems people face would be good at informing many. I have good days and bad days. It's never the same. Sometimes people look at me and say they couldn't tell I have a condition. Other days they say I look so sick. Informing people on dialysis and how it isn't easy would be a good thing.

[Razman]

I was once told that the best way that a person can understand dialysis is for them to experience it.  Have them sit in a chair , tie their arm down, put  5 pounds of weights on their stomach ( take  1lb off each hour ) and then have them sit there for 4 hours and do this at least 3 times a week for the next  month.  Maybe even have a nurse stick them with a needle now and then.  Then ask them to limit their fluid intake and change their diet.  By the end of the month they will experience it and won't any trouble writing about it.  The only problem is that they probably won't be able to use the words they would like to !

[angela515]

I was once told that the best way that a person can understand dialysis is for them to experience it.  Have them sit in a chair , tie their arm down, put  5 pounds of weights on their stomach ( take  1lb off each hour ) and then have them sit there for 4 hours and do this at least 3 times a week for the next  month.  Maybe even have a nurse stick them with a needle now and then.  Then ask them to limit their fluid intake and change their diet.  By the end of the month they will experience it and won't any trouble writing about it.  The only problem is that they probably won't be able to use the words they would like to !

The only problem with that is getting them to actually do it without cheating. Since they know they CAN cheat, they usually do. I mean cmon... even we cheat, so... imagine them..

[Rerun]

I would first say "DO another one."  People need to be reminded about things they don't face everyday and there cannot be enough awareness at this point in time.  Also, how about doing a story on treatments for chronic illnesses with a attention/highlight on dialysis and it's uniqueness describing various treatments, recognizing the effort patients put into it.  The same story can be told with a unique approach without making it overkill.  Before I was affected (even after diagnosis) I was unaware.  Just my thought. - George

Is that Affected or Effected?  I saw a bit of that Grammarlady on Oprah and now I can't remember which is which.

I agree George.  Do another story about dialysis.  Do it again and again until you can walk up to a person on the street and ask them if they know what dialysis is and they can tell you.

That is how she can start her story.  I really didn't think we needed another article on Dialysis, but when I asked some people on the street what dialysis was they said "ummmfff something to do with your liver"?  "Ummm a new diet?"  Then I decided we needed another article on dialysis.

[lola]

TELL TELL TELL my girlfriend was just over for dinner tonight and wanted to know all about dialysis!!! We need to keep talking about it.

[luckaholic]

I would like to see a story detailing what dialysis involves. That it is not just simply "plugging and unplugging into a machine", there is a hell of alot more involvment. I get alot of people that think that is all it is. My grandmother in law to be will tell me to hurry up, if shes waiting for me to come off the machine to take me somewhere. She doesnt realise you simply cannot "hurry up" coming off the machine and stopping bleeding.

[livecam]

Several years ago California had a rather large problem with a huge demand for electricity and a severe under-capacity to generate electrical power.  Rolling blackouts had been planned and actually started to happen when demand exceeded capacity.

One evening a rolling blackout happened and we lost power in the dialysis unit.  The emergency procedures we had been taught suddenly had to be used.  Manual blood return was done with the emergency hand cranks on the machines and everyone was taken off.  We were given the option of leaving or staying until power was restored and completing that night's treatment.

Most people decided to go but for some reason I hung around for a couple of hours until the power was back and we were put back on.

That event got my attention and that of everyone else.  The next morning at work I pitched this story to our planning editor who thought it was a good one.  A crew was sent out to the unit to interview one of the nephrologist owners and the director of nursing.  There were lots of good shots of patients actually in treatment included in the report and an interview with me about what had happened the night before.

It isn't often we get to portray dialysis as it actually is but that was a great opportunity that knocked that we were able to take advantage of.  I think that piece is still in the tape archives somewhere...I would love to see it again 6 years later.

[Duane]

Adding to the posts on dialysis and the news media, much has been said and more to come mainly on research/development and new centers popping up, now you have the big centers buying the small centers and such.

Lately i've been lead to study more about understanding blood and our bodies especially "Red Blood Cells" and finding biblical links of understanding.

It does matter what we eat and drink, it also matters how we live, what kind of lifestyle did our parents and there parents live, what they passed down to us.

Then you have the global food market doing whatever they can to stretch the dollar using chemicals on all manner of food we eat and affecting the air we breath.

The facts are it's a touchy subject and very big concern worldwide now.

To sum it up here for me: Why are there so many Kidney Failures happining?
Something is seriously wrong here.
I understand more today what is meant by the saying some 4500 yrs ago: "The life of the body is in the blood"

[Rerun]

Several years ago California had a rather large problem with a huge demand for electricity and a severe under-capacity to generate electrical power.  Rolling blackouts had been planned and actually started to happen when demand exceeded capacity.

One evening a rolling blackout happened and we lost power in the dialysis unit.  The emergency procedures we had been taught suddenly had to be used.  Manual blood return was done with the emergency hand cranks on the machines and everyone was taken off.  We were given the option of leaving or staying until power was restored and completing that night's treatment.

Most people decided to go but for some reason I hung around for a couple of hours until the power was back and we were put back on.

That event got my attention and that of everyone else.  The next morning at work I pitched this story to our planning editor who thought it was a good one.  A crew was sent out to the unit to interview one of the nephrologist owners and the director of nursing.  There were lots of good shots of patients actually in treatment included in the report and an interview with me about what had happened the night before.

It isn't often we get to portray dialysis as it actually is but that was a great opportunity that knocked that we were able to take advantage of.  I think that piece is still in the tape archives somewhere...I would love to see it again 6 years later.

Knowing what you know now.... that Enron planned those blackouts.  There was electricity, but they would call a certain transforming station and tell them to cut the power so to disguise a power shortage so the prices could go up without question.  Sick people!

[st789]

Yes, most people have no clue what we not only physically but more mentally effect in some ways with kidney failure.  Even after successfully kidney transplant, there would be major adjustments in how we feel both mentally and physically and more importantly our psychologically.  It is not like a healthy kidney and the problem with paying for medication after 3 years due to stopping of Medicare, unless you impovish oneself to qualify for Medicaid.  Basically we will always struggling with paying our bills.