Learning

[mysty]

Just wanted to say hello to all the others here in this section.  I am brand new to all this.  Unlike some of you, I did not go thru the process with him from the beginning.  So..I have a lot of learning and catching up to do.  I've been reading all the posts in this section and learning/understanding quite a bit.  I'm such a newbie at all this that I've actually have had to look/google certain words (yes.. I'm that new to all this!).. So you all be patient with me please  should I ask a realllly silly question.
 
I guess the one good thing about our relationship is I have never known him any other way so I can't look back on other times. 
But I'm here now and not going anywhere... and yes.. I'm aware of all the ups and downs emotionally that will occur.... between that and all the technical things...well it's like jumping right into the frying pan...

Lots of hugs to all of you for being just who you are.

[willieandwinnie]

mysty  you are among great people here. Ask all the questions you want, and we will respond. Remember to try and get sometime for yourself (even if it is an extended bath). Becoming educated about this disease is essential for anyone who is an advocate. Just remember, we are here for you.

[Sluff]

You are right there will be a lot of ups and downs but I know that in the long run it will make you both stronger. Love conquers all things. There are no silly questions in the search of educating yourself. You are commended for caring enough to learn about this. 

[petey]

mysty you are among great people here. Ask all the questions you want, and we will respond. Remember to try and get sometime for yourself (even if it is an extended bath). Becoming educated about this disease is essential for anyone who is an advocate. Just remember, we are here for you.

Oh, yes, willieandwinnie, you're exactly right about all of the above.  Mysty, knowledge is POWER -- that and love will get you two through all of this.  I tell my students (high school age), "The only SILLY question is the one you don't ask."  I'll tell you the same.  I'm here for you when you need me.

[mysty]

Love conquers all things.

That it does Sluff..that it does..

[del]

Don't ever consider any question to silly to ask.  Education is the key to all this. Find out as much as you can about dialysis.  When hubby was in center he even had to tell the nurse's stuff that they didn't know!!  We have found that you have to be educated in order to look after yourself and get the best care you can possibly get.

[KT0930]

Don't be afraid to tell a doctor or nurse or dialysis tech that they're full of it! As others have said, knowledge is power, and if the so-called "experts" realize that you've been doing your homework and actually know what you're talking about, they'll treat you with a bit more respect (those who are worth bothering with will, anyway!) Come here to get questions answered, and support for the hard times. You're among friends.   

[okarol]

I have been on the internet for 6 years, reading, researching, trying to learn all I can about kidney disease. You'd think I'd have a PhD by now - but I still learn something new every day.
I think any patient who has love and support really appreciates it, because going through all of this alone is very tough.
Use the "search" option and you will see lots of topics to help you out. And we LOVE questions, so fire away!

[mysty]

Thank you all so much.. i will ask questions.... right now.. getting thru the weekend here at home.. wednesday I pack and fly up thursday for a long weeked with him...

We are both soo looking forward to this.... then I have a lead on one Fresenius location that Rolando and Alene recommended here by me.. but just like you said KT.. if i go and make and appointment.. I will have to go well educated not only to get the answers I want.. but to know what to look for in the center.... thats if they will even talk to me..

One place told me that they couldnt talk to me and had to ONLY discuss the center with his present center.  I was totally miffed and the lady knew it.. Unfortunately I have this thing with my eyes and eye brows that will let the person know...if i could reach thru and rattle you i would lady!!!....

Hopefully that center was not the norm and this other center would be happy and delighted to entertain my questions and try to impress me with their facilities and human touch and make me feel good about the place... if not.. they get the eyebrow too!!!

I look at it this way.. yes.. he needs to go.. and yes they know their services are needed.. doesnt mean they can be so dysfunctional and poor in attitude and treat it off handedly..
It's still a service.. medical at that.. a profession that should.. should.. show themselves in the best light and offer the best services period.
The biggest mistake any center can make.. is not catering to me first.. then if i am satisfied.. cater to him.

And yet.. i hear.. if you make waves.. it gets worse.. so i'll have to do a balancing act and watch my step...
So tell me.. besides the role of *spouse*.. how careful do i need to be with these places...??

Ok.. off to the food section.. this might work out quite nicely as i was just told my cholesterol is thru the roof.. go figure!.. there goes that cookie dough ice cream i just got too!!  *sigh*..(well at least not around him.. i'll have to sneak it somewhere and cheat!- i hope he doesnt read this!!!!)

[The Wife]

Welcome to the site Mysty.  I agree, the more we know, the better equipped we are.

[annabanana]

mysty,
I, too, am new to this. Hours on the internet and at this and other sites to try to make sense of it all. And the professionals.....YIKES!....
Some are really good but others are horrible. (My husband's nephrologist speaks to me only, as if my husband isn't even in the room!
I'm hoping he'll get a new neph soon.)

The biggest thing I've learned is that everybody is different. There are no rules when it comes to kidney disease. And that can be hard,
because we just don't know what to expect. --A.
   

[mysty]

Hi again Anna..
I haven't met any of his docs yet.. and i doubt seriously.. they will talk to me.. not his wife so don't know how that will go....
And yes.. a lot of info is just staggering.

What to expect?  Enjoy today.. that's all.

[annabanana]

well said, mysty. enjoy today!

[mysty]

The only thing I know Anna.. is they don't know it all.. and no two are alike.

The Wife. Hello...knowledge is a wonderful thing... I need one more brain cell though.. the only one I got is overflowing..

[The Wife]

Hello Mysty....when my brain cell overflows, I just shake out and start over again. 

In regards to doctors not talking to you, have your partner tell them it's okay to give you information.  The very first specialist that entered my partners life didn't allow me to come in for the discussion even though we were living together for many years.  When my partner said it was okay, I was invited in.  The neph didn't even hesitate to let me into his office or talk to me and all the other doctors and nurses are the same.  After all, I am The Wife.

[mysty]

TW.... thank you so much.. yes..I will make sure he does that and I can go with him...that would be really wonderful..

[skyedogrocks]

I know this is late, but welcome Mysty.  The more you know, the better you are.  Heck, there are things I know more than my husband does.  He has a great Neph and knows that I am a spitfire and will demand the best treatment for Rob or else  . 

My biggest advice is to just be there for him and be patient and loving when he needs it, give him a big hug when he has had a bad day/session and also give him a good kick in the butt when he needs it. 

This is such a wonderful and loving site, so full of information and great people.  I have learned soooooo much by being here, I know you will too!

 

[st789]

 

[mysty]

Thank you skyedogrocks .. you are right.. abosolutely..

st789... hugs are the best !!