Kidney disease gets a lousy press.

[Beth35]

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.

[MooseMom]

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.

[cariad]

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.  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.

[RichardMEL]

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!!!  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!" 

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!!!  )

[Zach]

Did I hear my name mentioned?

[MooseMom]

Did I hear my name mentioned?

I do believe you did.  Why am I not included in this illustrious list?  Huh? Huh?

[cariad]

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!!!  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!" 

Anyone who wears an I Hate Dialysis tee to the nephrologist's is rocking something.
At your request:
Richard (who is saving his best to rock that future transplant)

 , Zach. Didn't mean to start your ears burning....

[RichardMEL]

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.

 

[okarol]

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.

 

Let's see it! 

[Lucinda]

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.



 

[RichardMEL]

Let's see it! 

OK only because you asked nicely I took some quick pics....

[monrein]

LOVE the shirt RM.  And Lucinda, so great to hear from you and best of all to hear that you're doing well.  Cheers.

[jennyc]

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

[cariad]

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.

[RichardMEL]

lol you do not want to see me in it - that would ruin the picture!!!!

 

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

[okarol]

I love the shirt - but it'd be better with you in it!