Overwhelmed

[YLGuy]

I am completely overwhelmed in trying to learn about my new found disease.  There are sooooooo many aspects of kidney failure.  I research every day and feel that I have barely scratched the surface.  I have only researched about the disease and in center HD.  I am about to talk to a transplant center and am sure that there is a whole new set of questions that I will have.  IHD has been a godsend for sure but sometimes it raises new questions for me(not a bad thing).  Basically the more I learn the more I feel I don't know and the different aspects of treatment and daily lifestyle choices I need to make can have a major impact on my quality of life. 

AAAHHHHHHHHHHH!

Sorry, I just needed to let a little scream out. 

[okarol]

There's so much to learn and I was consumed with trying to know everything instantly! Don't worry, you will get what you need - just ask questions and you'll get lots of help and support here!

[petey]

YLGuy,
Marvin and I are still learning something new almost daily about ESRD, dialysis, transplantation, etc. and we've been doing this for over 14 years now.  We've read a ton of articles, researched a library full, and asked a million questions, and we still feel like we're just scratching the surface.  You're not alone.

[Rerun]

Knowledge is power!

             

[st789]

Come here for supports and info.  Much more.... Welcome.

[peleroja]

Scream away, that's what we're here for.  We're the only people who truly understand you.  Even the doctors and nurses don't know what it's like to be us.  Come on back and post often.

[Aaron]

I know it's a lot of work to learn as much as you need to know, but trust me, it's more than worth it.  So many people with ESRD can't or won't learn about their condition.  They take a very passive role in their treatment.

I don't know how many times I've gotten treatments or tests that I needed and avoided those I didn't just because I was aware of my condition and was able to share that information with my doctors and nurses.  Of course I don't second-guess them, but I do make sure they are aware of all the facts when they make a decision, and I don't hesitate to question things that don't seem right.

I don't know if there have been any studies, but I feel confident in telling you that the more you learn the better your health is likely to be.  Yes it's hard, but it's sooooooooo worth it!

Good luck.

Aaron

[Zach]

I've been on in-center hemodialysis for over 27 years and I continue to learn something new all the time.

Knowledge is power, and that can lead to a healthier, longer life on dialysis.
But stick to the basics for a while, and take it one day at a time.

[paris]

Just when you think you know it all, everything changes and you have to start over!  I learn something here everyday and without everyone else's experience, I would not have pressed for infusions.  This is the best place for questions and answers.   

[kitkatz]

Zach- You are the Iron Man of dialysis.

[Chris]

Before the internet really took off, I didn't know a lot about renal failure and types of dialysis. Then when I went for my first transplant seminar, I was awken to many things that sparked me to do more research on the different meds, complications, operating procedures. All that was done by going to the library and signing up for various newsletters. Then I started using the internet more and more which you get an overwhelming feeling of WOW I did not know that!

Now the books I have are somewhat out of date. If you can, go to more than one transplant center seminar to compare notes or get answers to more questions. To me it's like another job reading as much information, taking notes and asking. Well now days that's if I remember to do that and then if I do, bring it along to the doc's office.

[bountyhunter_ga]

Welcome, it too was very overwhelming at first, until I fired the first Hospital here in Atlanta. Don't be a victim to hospital runaround.
Example ; don';t let your hospital string you along with treatments,.
 Check around with different transplant centers and find out there procedure.
Try to do all your testes all in one day,or with your doctors of your choice.
If you have a donor ask when they will test the donor, at the same time I hope. If you don't have a donor it could be a while to receive a kidney , this depends on what part of the country you sign up in and your blood type.
Once you go on dialysis usually when your kidney gets down around or less 15% function you can go on SSC list medicare if you don't have a good insurance.
These are just some basic questions to ask, I fired my first hospital for jerking me around don't be a victim to the hospital

[billybags]

I feel that I am being taken over by this dialysis stuff, as you say there is so much information out there and you try to take in as much  as possible. I may become a renal nurse Ha Ha or a neph perish the thought. All I can say to you is renal is a mine field, it blows your mind.

AAAHHHHHHHHHHH!

Sorry, I just needed to let a little scream out.

EDITED:  Quote error corrected - Bajanne, Moderator

[paddbear0000]

Just relax, and take it one day at a time. you don't need to know everything. And we are all here to help when you need it. I did all of my reading on IHD starting about a year before I actually started dialysis. There was so much good, honest info here, that I rarely went anywhere else. And both of the clinics I've been to have said I was the most educated patient they had ever had. This site is a wealth of information and support!

[YLGuy]

This is an awesome site.  My new social worker stopped by and asked me if I knew about my dialysis options.  I went through the different options and she was amazed that I knew all my options.  She said that I was the first patient that actually knew them.  I of course owe this to IHD. 

The problem is that I WANT to know everything.  A simple decision in my care can have a major impact on my life.  The nurse came over during my dialysis and injected something into my lines, turned and began to walk away.  I called her back and very nicely asked her to please never do that again.  I asked her to please tell me what you are injecting and show me the label with my name on it PRIOR to doing it.  She said that it was epogen and she would honor my request moving forward.  I thanked her and just said that nobody is perfect and people do make mistakes and that I would be more comfortable if we handled my meds in that manner.

[paddbear0000]

I didn't mean you don't need to be aware of everything that goes on at dialysis. That you should always do! I keep a journal that I take with me and record everything that happens during my sessions--vitals, meds, anything out of the ordinary, machine settings, etc. I am more aware of any trends (or irregularities) that occur than they are!

[twirl]

rant and scream
that is one reason IHD helps our members
we understand

[bountyhunter_ga]

Trust is a big thing.
I trust the staff where I do Dialysis, but they always advise me of any medication going routine or not.
I'm in a renal center so its very clean with personal tv's to help the day go by. If you feel good about your center stay,if not remember if it look like duck smells like a duck it's a duck.
I'm not a very trusting sole but over the years I do give medical people the most trust after I get to know them I demand HONISTY however. Good luck and self teach