How did you hear of IHD?

[Hemodoc]

On another thread, several people have voiced that we should change the name of IHD to one that is less negative. I believe that IHD is actually a marketing stroke of genius since many find this site by putting a simple Google search of "I hate dialysis" and come directly to this link.

I believe it would be quite interesting to see how people found this site. For me, I found it by another Google search looking into daily dialysis. How did you find this wonderful site created by Epoman?

[iolaire]

Travel dialysis searches.

[Hemodoc]

Travel dialysis searches.

Interesting, did you see Bill Peckham's travel articles in that search?

[MooseMom]

I found IHD while googling dialysis.  I learned about all modalities from this site before my neph even mentioned the word "dialysis".

[Hemodoc]

I found IHD while googling dialysis.  I learned about all modalities from this site before my neph even mentioned the word "dialysis".

Did you vote above?

[MooseMom]

I have now!

[Hemodoc]

I have now!

Thanks Moosemom, remember, this is not a presidential election so you are only allowed to vote once here on IHD. 

[cdwbrooklyn]

I found this site by searching for more information on dialysis.  I was very curious what people were saying as I like to hear other people comments on different topic.  However, I’ve shared this site with many patients not sure if they logged on.  Also, I shared this site with my GYN as he has a friend in India that needs dialysis but too poor to pay for the machine.  So my GYN wants to purchase the machine for his friend.  Also, not sure if he logged on as well.

[MooseMom]

I have now!

Thanks Moosemom, remember, this is not a presidential election so you are only allowed to vote once here on IHD. 

Are you sure I'm really MooseMom?  Shouldn't you be asking for ID?

[Hemodoc]

Sure, ask for ID. They did at the DNC convention:

http://www.theblaze.com/stories/2012/09/03/dems-dont-seem-to-oppose-id-requirements-when-it-comes-to-their-convention/

   Too funny, you stole my thread Moosemom. Wait, I stole own thread. 

Question, can Epoman vote as well? Is he still a member or has he been purged?

[MooseMom]

  Too funny, you stole my thread Moosemom. Wait, I stole own thread. 

I think this is where I start asking you, "How are things in Idaho these days?" and "Are you doing lots of fun things with your adorable grandPrincess?"  LOL!

This is a good thread, hemodoc, and I am really interested in everyone's answers!

[Hemodoc]

  Too funny, you stole my thread Moosemom. Wait, I stole own thread. 

I think this is where I start asking you, "How are things in Idaho these days?" and "Are you doing lots of fun things with your adorable grandPrincess?"  LOL!

This is a good thread, hemodoc, and I am really interested in everyone's answers!

Come on Moosemom. stop sending me personal posts in an open thread. My goodness, the post police will surely sanction us for sure.

But to answer your question, a bit of a cloudy day with rain in the forecast for the next three days. I have about 40 more minutes on my "torment machine" and then off for the rest of the day. We switched to early morning sessions and get done between 1-2 pm which gives us the rest of the day and I get the energy boost from dialysis during the day instead of just before going to bed. How is your winter wonderland in the midwest?

[iolaire]

Travel dialysis searches.

Interesting, did you see Bill Peckham's travel articles in that search?

Yes but the recent articles are re next stage which is not relavent.  I did read about his Singapore trip and it seemed like he had access to facilities that I do not, I.e. SQ NKF said their centers where for low income only and sent a list of private centers.

But I could have learned of of his site here b/c the rafting  post was at the top of the section.

[Hemodoc]

Travel dialysis searches.

Interesting, did you see Bill Peckham's travel articles in that search?

Yes but the recent articles are re next stage which is not relavent.  I did read about his Singapore trip and it seemed like he had access to facilities that I do not, I.e. SQ NKF said their centers where for low income only and sent a list of private centers.

Bill has South America and the Antarctic to complete dialysis on all seven continents. Quite remarkable really.

[MooseMom]

Come on Moosemom. stop sending me personal posts in an open thread. My goodness, the post police will surely sanction us for sure.

But to answer your question, a bit of a cloudy day with rain in the forecast for the next three days. I have about 40 more minutes on my "torment machine" and then off for the rest of the day. We switched to early morning sessions and get done between 1-2 pm which gives us the rest of the day and I get the energy boost from dialysis during the day instead of just before going to bed. How is your winter wonderland in the midwest?

Oooooh, sanctions!  Sounds like more fun than the vacuuming I need to get done once I finish derailing your thread.

Spring is definitely here, but it's chilly and incredibly windy at the moment.  Good day to be indoors stealing threads.  LOL!

Hemodoc, do you travel much with your machine?  I know you go back and forth from CA to ID, but do you do much travelling elsewhere?

How did YOU find IHD?

[Hemodoc]

Just house to house, but we don't have the house in CA any longer. The machine does weight 75 pounds so it is not all that easy to travel for many people. I must confess that I am quite content right here in Idaho, so we do day trips and some overnights without the machine after dialysis is done. It is certainly doable, but quite a bit of work from what Bill and RIch, God rest his soul, talked about on more than one occasion.

I must admit to not having a lot of wanderlust any longer.   Hats off to Harvey and all those that have made travel a huge aspect of NxStage. Some are quite adept at getting to some remote places. In my younger days I was blessed to see this country up close and personal. I am quite content to stay and play with the grandkids right now.

Who knows, maybe someday in the future.

Better be quite, I think I hear the post police coming.

[MooseMom]

Satisfying one's wanderlust can be fun, but there's something comforting in growing older and being happy in your dream home in Idaho.  I don't blame you one bit!

I wonder how many people find IHD like iolaire did, ie, searching for information on how to travel while on dialysis. 

[kristina]

.

[kristina]

After being told in August 2006 that I would be on dialysis within six months, I was completely frightened and panicked.
When my mind was reasonably straight again, I frantically researched on the Internet
for a kidney friendly diet through which I could avoid dialysis for as long as possible and I found IHD.
Before finding IHD I had tried a few other sites but there was no real inspiration...
When I came to IHD I asked other members about kidney friendly diets and found great help...
... many IHD members were assisting me and I remember Chris searching through all this papers
until he found more details on low potassium vegetarian food and then he sent it to me...
... that was a very decisive moment for me because it started my very refined diet going...
I am very glad I came across this information because it gave me much more time...
... A few weeks ago it looked as if I really had reached the point of needing dialysis now,
but with the new developed treatment of "Mircera" my Urea (bun) and Creatinine levels have improved ...
... if I would have not searched for a kidney friendly diet all those years ago,
I would have been long on dialysis and with my current "Mircera-treatment" I could win a little bit more time  ...
...but in August 2006 when I was diagnosed with ESRF and only six months until dialysis,
 "Mircera was not even on the market yet...  my hope is that in the future many more medicines will be developed to assist us ...

[Charlie B53]

I just looked to remind me when I started here, Jan this year.  I started PD end of May last year.  It has been going well other than my site kept getting 'oblonged'.  That area is numb from nerve damage done years ago with my triple by-pass.  I never noticed if my hose was pulling during draining and re-filling.  A little adjustment of where my pole is during exchanges and no more problem.

So 6 months in I Googled Dialysis forums, and started reading.  Davita site didn't have any current traffic, IHD had lots of traffic, making it a no brainer which site to join.

I've learned a lot here, and am the first to admit that I don't really know anything, which makes this a great place to learn from each other.

As been said before, Experieince is often the best teacher.

Wishing it wasn't so, and all of us could be 'normal' and healthy again.

Charlie B

[noahvale]

^

[Michael Murphy]

when looking for info on dialysis IHD turned up and for some reason I was drawn to it.  I find Dialysis very restrictive.   I have to be there 3 times a week for 4 Hour and 15 minute treatment.  Now I make a point about not being late or missing appointments and The critical thing on my schedule is dialysis every thing else is scheduled around it.  I have to watch what I eat, spend a long time stuck in a amazingly uncomfortable recliner and I do these thing because they benefit me.  The only rebellion I am allowed is announcing that as I leave Fridays that I am not coming back this week.  Then I found IHD and my feeling about dialysis found a channel.  I wasn't alone in this love hate affair.  I even found my new favorite tee shirt, DIALYSIS: DAMNED IF YOU DO,  DEAD IF YOU DON'T
I have learned more on this site then from all the time spent with the Doctor,  For god sakes I would never know there was a fruit that could kill me(Starfruit) without this site.

[kitkatz]

I was nine years on dialysis and was searching for information or a group to join and ran across the name on the bottom of a site.  I went onward with my search then a few days later went back because of the name.
Here I am six years later.

[grannyM]

I seldom comment but read  IHD often.  I seldom login because I am not to login at work but can read the site.  So I have login at home and answering the question. How I fond HID.  I just typed a search, kidney forum, and IHD was in the list.  I went to the other forums first and they had little current comments. I was not crazy for the name IHD and thought it might be just a group to be negative and complain.  A few years later and I actually started dialysis I went back to IHD because I really, really, hate it, feel negative, and would like to complain about this barbaric treatment. My first week, I was freezing cold, sitting in the chair, and the only thing to warm me was my own blood lines...I almost had a screaming attack....   I asked the staff for information for group support,, NONE.... I asked for internet support... and only given Divita  and national kidney groups.  I asked questions and was told, you just come sit here and we will do the thinking.  I took a note book and wrote down everything.  wt, dry wt, b/p, who my tech for the day was, machine settings, start time and ending time, any injection what it was, who gave it, what ever I was asked to swallow,  ect.  And they had to wait while I wrote it all down before I would let them do anything.  Some reason they were NOT happy with me.  Since I was not to think for my self...  after one month they highly suggested I do dialysis at home.  I do not have a care partner so I was very happy to move to PD.  Guess what, I get to think for myself now.  LOL....  I have had several unpleasant times with the PD nurse.  I saying one thing and she writing and reporting to the neph. something else.  Now, I get out my note book and write down what ever she says, or does... and I NO LONGER tell her anything except I am doing fine, even if I have to paste a smile on my face.  She told me so much WRONG information, and I found what I need on IHD.  I asked her about IHD and she said never go there as it is unreliable information. Only ask her.  HA!!!!!  She has so proved her self wrong.  She told me drain pain was in my head, and I was just a complainer.  I said the fluid made me feel so full I thought I would vomit and she said people don't feel the fluid...  On and on... GGGgggrrrrrrrrr!!!!!  But regardless of the name I continue to read IHD and how others deal with the difficult times and the good times.  I have mentioned IHD to people who will actually talk to me about doing dialysis, I tell them if they read some of the posts they will better understand me. They asked why I would want to read about hating dialysis since I have to do it...  I tell them it is just a name, and some time it is a hate dialysis but mostly it is just people who really understand.   IHD was easy to find, I stay current reading all the posts, I have cried, and laughed, and felt relief I was not alone in my feelings.  I don't post often so bye IHD community.  The name is fine with me.

[Hemodoc]

I seldom comment but read  IHD often.  I seldom login because I am not to login at work but can read the site.  So I have login at home and answering the question. How I fond HID.  I just typed a search, kidney forum, and IHD was in the list.  I went to the other forums first and they had little current comments. I was not crazy for the name IHD and thought it might be just a group to be negative and complain.  A few years later and I actually started dialysis I went back to IHD because I really, really, hate it, feel negative, and would like to complain about this barbaric treatment. My first week, I was freezing cold, sitting in the chair, and the only thing to warm me was my own blood lines...I almost had a screaming attack....   I asked the staff for information for group support,, NONE.... I asked for internet support... and only given Divita  and national kidney groups.  I asked questions and was told, you just come sit here and we will do the thinking.  I took a note book and wrote down everything.  wt, dry wt, b/p, who my tech for the day was, machine settings, start time and ending time, any injection what it was, who gave it, what ever I was asked to swallow,  ect.  And they had to wait while I wrote it all down before I would let them do anything.  Some reason they were NOT happy with me.  Since I was not to think for my self...  after one month they highly suggested I do dialysis at home.  I do not have a care partner so I was very happy to move to PD.  Guess what, I get to think for myself now.  LOL....  I have had several unpleasant times with the PD nurse.  I saying one thing and she writing and reporting to the neph. something else.  Now, I get out my note book and write down what ever she says, or does... and I NO LONGER tell her anything except I am doing fine, even if I have to paste a smile on my face.  She told me so much WRONG information, and I found what I need on IHD.  I asked her about IHD and she said never go there as it is unreliable information. Only ask her.  HA!!!!!  She has so proved her self wrong.  She told me drain pain was in my head, and I was just a complainer.  I said the fluid made me feel so full I thought I would vomit and she said people don't feel the fluid...  On and on... GGGgggrrrrrrrrr!!!!!  But regardless of the name I continue to read IHD and how others deal with the difficult times and the good times.  I have mentioned IHD to people who will actually talk to me about doing dialysis, I tell them if they read some of the posts they will better understand me. They asked why I would want to read about hating dialysis since I have to do it...  I tell them it is just a name, and some time it is a hate dialysis but mostly it is just people who really understand.   IHD was easy to find, I stay current reading all the posts, I have cried, and laughed, and felt relief I was not alone in my feelings.  I don't post often so bye IHD community.  The name is fine with me.

Thanks grannyM, sorry to hear of your complaints, but unfortunately, it is a universal issue here in the states. Yes, as with all internet sites, you must be very careful with anything your read on the internet, but IHD is a much better source of information to take back to your medical team and discuss the issues in a clear manner with them. Most dialysis staff including nephrologists have a very limited understanding of optimal dialysis issues. Quite sad, but I would venture you are better informed at this point than some of your techs and nurses any of these issues. In the end, it is your disease and you have every right to know and understand every single thing that is occurring. It is for your survival and the dialysis unit does not always have your best interest at heart. In fact, profit is their motivating factor much more so and everything is for reducing their costs even at our expense.

There are many excellent dialysis sites, but IHD is a unique member of that club. I hope you continue to do well "thinking for yourself."