Thank you Mari for the frozen food recommendation. I bought some frozen fruits, and vegetables on Tuesday. I packed them into my freezer. BF

I hate to say this, but the hospital makes money on people who go through dialysis. I am angry about their lack of coordination with each other, and lack of concern for me. BF

You are right BF, they should be doing more for you...

They definitely should have referred you to a dietician, or at least had one of the doctors discuss dietary changes with you. I can't believe they didn't.

The only reason I can think of for them not to have put the dialysis catheter in yet is because your kidney function had improved a little the last time your blood was drawn, and they don't think you will need it as soon as they first expected?
But I would think they would have put it in anyway...

Where is your case manager in all of this? Does she have any involvement?
Do you have a separate case manager on the transplant team you can work with?

Hang in there BF. It seems like you are doing more for yourself than they are

Steve protein is really hard on your kidneys. I would suggest eating less of it.
No more than 20 grams at each meal. meat eggs cheese, fish, yogurt, milk cottage cheese, nuts are all sources of protein. even beans.
look up/google low protein diets.
(((((HUGS)))))
bizi

Steve

I'm honestly impressed with how you are handling all this. And doing
all this work for yourself. See they aren't doing it. Because they
don't know how to do it for you. They seem to think that failure is
the option and then you will need help. So instead you are showing
them that its the opposite.

I think maybe you need to let the hospital itself know that this particular
unit isn't doing its job. They aren't helping patients work through what
they can do to help themselves. Instead they are trying to get them
on dialysis and things instead. So you just went to the opposite and
helped yourself.


Donna

Thank you everyone for your support. I am very disappointed with the hospital system.

Bizi. Thank you for the advice on the low protein diet. I saw that somewhere on the computer.

The only advice that I received from everyone else here in this State is to drink lots of water. I mentioned that I had a apple to one of the members of the team, and she said that is good.

I see something in action with the lack of communications with the team, and the doctors that I don't know how to put into words. It's disturbing. They are not doing their jobs. If I was a important person, I may be receiving more help, and communication, and concern from them. I'm not stupid, and I wasn't born yesterday. BF

You may not have to be "important" to them, you may just have to be a squeakier wheel.

I agree with Donna. You are handling everything so well, BF

Honestly, I have a feeling they don't see anyone as important.
So I don't think your going to find they treat anyone differently
than you. I've got a feeling that they have so many patients
they don't need to.

I think its more they just think if they do their supposed job
its okay.

Donna

I agree with Donna,

Docs and their staff do not treat people as if they are important.

They are moving us (if we are lucky) through the system.
I used to type or write a short list of questions or issues (3 or 4) to bring into
the appt. (One print out for me and one for them).

It helped me stay on track. And it helped the DR / staff member
know what I expected to get addressed.

My system worked more than half the time.



M

I worked as a CNA on a med/surg floor where the liver failure/transplant patients (as well as others) went. The transplant team was wonderful. They really did work as a team, and I never heard of any complaints by patients being treated poorly or unfairly- and they usually had multiple and long stays with us. But it's one of the best hospitals in the country for liver transplants.

In my time as a CNA in several hospitals, I only saw one patient get special treatment of any kind, and it had more to do with him being fluffed and buffed and spoiled by the nursing staff vs. getting personal attention from doctors. He was high up in the Catholic Church. That's all I'll say.