I wish someone had told me...

[YLGuy]

Hi!
This is my first post besides the post I did to introduce myself.  I have been reading many of the posts and am finding a wealth of information...things I never had even heard of.  It is going to take awhile (I know...I have the time now) to get through all these threads.  What I am asking the people who have been through this longer than me is what did you learn to late?  What did you wish someone had told you?  I am looking for any tid bits of knowledge that may help me make decisions in the future.
Thank you,
Marc

[okarol]

I wish someone had told us that Jenna could have accrued wait time as a minor, which would have qualified her for an earlier transplant. I wish they had explained binders and why to take them with food. I wish we had known about multiple listing for transplant evaluation. Wow there are so many things I cannot think of them all!

[kitkatz]

I wish someone had explained ALL of the modes of dialysis.
I wish I had known to look on line for information.
I wish someone had told me about IHD.com sooner.

[petey]

Marvin and I wish, too, that someone had told us about the different modalities of dialysis (home hemo, PD, nocturnal, etc.) instead of the "standard" in-center hemodialysis.

[MandaMe1986]

I wish someone would have told me that life isn't over yet.  I spent a good part of 4 or 5 years depressed and waiting to die.

I wish someone would have explained how bad it is to take all my meds on an empty stomach, no a glass of milk isn't enough. Haha

You know there are so many little things  you wish you knew.  This is a great thread.

[willowtreewren]

I wish that they would take a little more time explaining what the meds are for, how to take them and what to expect from them. That would have alleviated so much worry.

[KICKSTART]

I wish someone would have told me i was never going to be slim again !! (PD)

[RightSide]

I wish someone had told me about the itching, and how high phosphorus and/or high PTH can exacerbate it.

That symptom had been sheer murder, until my phosphorus and PTH came down to reasonable levels.  But that took months.

If I had known about that in advance, I could have gone on a lower-phosphorus diet even before starting dialysis.

[peleroja]

My kidneys failed so fast that when I first started I had a permacath instead of a fistula.  I thought, "this ain't so bad," until a technician pointed out that with a fistula I would have 2 large needles stuck in me 3 times a week.  I had been leaning towards PD, but right then and there my decision was cinched.  Glad I found out in time!

[jbeany]

I wish someone had told me it was possible to get listed for a transplant before you start dialysis.

[Hanify]

I wish someone had told me about IHD

[cherpep]

I wish someone would have told me that I would not die if I ate a tomato.  That anything is OK in moderation, and you learn what you can tolerate through trial and your blood tests. 

[tyefly]

 I wish someone would tell me where I can get put on a list for a transplant......are ther web sites or what ......  I wish someone would tell me how to get all this water off of my body..... I am thinking about not drinking ever again...... I love to wish.....   

[kitkatz]

I wish someone had told me there were going to be ups and downs and ups and downs and ups and downs with this damned disease and dialysis!

[cariad]

This is such a great question, Marc!

I wish someone had told me that some hospitals will list you (inactive) almost immediately, while others wait until you've had every last test and blood draw. Since you always have the option to transfer time, I think anyone who wants to be on the list would do well to ask about listing protocol up front.

[cherpep]

I wish someone had told me there were going to be ups and downs and ups and downs and ups and downs with this damned disease and dialysis!

SOOOOOO true!!!

"Jane! Get me off this crazy thing!"

[dwcrawford]

I wish someone had told me to take better care of my kidneys and how to do it.

I wish someone had told me I'd lose weight when I started dialysis.  I  would have started years ago even before my kidneys failed.

[YLGuy]

I know!  When I started dialysis and my renal diet I lost 37 pounds in 30 days!

[Dan.Larrabee]

I wish, wow what a loaded question.

Get educated
Ask questions of everyone – techs, nurses, docs, surgeons and people like us on IHD
Don’t take the first option and believe it (especially from your Doc)
Take control of your own health
Figure out your own dry weight (don’t take the tech’s or nurses word for it)
Don’t take no for an answer. My center said no to electric blanket, drink, food and a visitor. Before I left the center to come home and do dialysis there, I had a space heater, pizza, chocolate milk and my wife to watch a movie.
Find out how your access works. I have a graft, the tech and nurse told me what side was arterial and what side was venous, they were wrong.

I am not trying to scare anyone, I am just saying there are a lot of opinions and many, although different, right answers

Find out all the pro’s and con’s of all modalities.  There are lots of them with many variations. Even the subtle difference of when you do dialysis can make a difference. Some will say “oh PD is the best” or “Nothing is better than NxStage at home”. The reality is that dialysis comes in more than one flavor because not everyone likes vanilla and not everyone likes sprinkles.

There is a lot of great information here, Epoman was a god send for starting this site, read as much as you can. Try a few things and don’t settle for what you start with. Experiment were possible and don’t be afraid to change it up. You’re not going to get it perfect the first time and that’s ok!

[staceyand joe92]

I wish someone would have told me even though dialysis is a huge adjustment to your life......you are going to be okay.  I had so much anxiety when I first started. I hated the center, hated the needles, hated how I felt after dialysis.  Now after 10 months I know that the center isn't that bad, the needles don't hurt that much, and dialysis makes me feel soooooo much better.

[hurlock1]

I must have a great dialysis clinic. 'cause they told me just about everything you people are wishing they had told you. They even provided a book and went through The entire book page by page and elaborated about such things as PD, Home, Itching and Why,  dry weight issues, etc. The dietitian is thorough, goes over different issues and plans, Gives me comprehensive llists what I can eat and what I should eat in moderation. Provides pages with recipes. All kinds of stuff. I would challenge any one to see if they did or did not give than I could digest more information  than I thought handle that first day. It was explained so simplistically and thoroughly that even in my altered state I retained the info and understood it. I think that I must be very fortunate.
jmz

[dwcrawford]

fortunate, or very attentive....

[Stacy Without An E]

I wish someone had informed me I could be listed on multiple transplant lists instead of just the one at UCSF.

I wish someone had told me women were going to be frightened and disgusted by my condition.

I wish they had informed me I would be too weak and tired to by of any good to anyone.

I wish they had warned me I'd lose most of my friends because no one wants to hang out with a sick person.

I wish they had informed me that my job would use my illness as leverage to lower my salary and pass me over for promotion again and again, knowing I can't quit because I need the health insurance.

I wish I'd been warned that suicidal thoughts would enter my head at least once a day.  Sometimes more.

I wish they'd forwarded on the fact that not everyone is compliant with sticking needles and that I should be wary of everyone at treatment.

I wish they foreshadowed how disgusting the bathroom would be at treatment.  Wiping your ass and sticking the toilet paper to the wall??  Who does that?

I wish they had just been honest and told me that I would be basically living out purgatory.

[paul.karen]

I wish there was a simple pill we could all take once a day for our dialysis treatment.

I wish they could use our own DNA to make us a new kidney in a weeks time.

I wish CKD/ESRD could be erradicated by some miracle drug.

I wish i was rich

[Inara]

1:  I wish someone had explained that dialysis is FOREVER...or until a transplant

2:  I wish someone (a DOCTOR, DUH!?!) would explain how important fluid restrictions are.

3:  I wish parents knew what we know now.