Well, gosh, apparently I need to start charging HIM visit fees!

[Sara]

Seeing as how I'm doing his job and all.  Good thing I went to kidney doctor school!  (Has the sarcasm stopped dripping off your screen yet?)

Joe isn't started on phosphate binders until I ask for them.
Joe isn't started on renal vitamins until I ask for them.
Joe isn't told he needs antibiotics for going to the dentist until I ask about them.
Joe isn't told about the possible small risk for getting hepatitis from the dialyzer until I ask about it.
Joe isn't signed up for or educated about possibly getting disability because I (we) haven't specifically asked for it.
Joe STILL isn't signed up to go to Mayo clinic to discuss getting on the transplant list, although after I asked about it, the doc said he would set it up.

I could go on and on (don't worry, I won't).

I'm starting to think the only reason we're going to him is for the signature on the prescription, and to interpret the lab results! 

 


(ETA I also wanted to say I wouldn't even know to ask about most of these things if it were not for this site, so thanks!  )

[Rerun]

Once he actually starts dialysis, don't forget to ask about Medicare.   

If he does home hemodialysis or CAPD it starts immediately.  If he goes in clinic then there is a 3 month waiting period.  Medicare pays 20% and is considered your secondary insurance for 30 months then Medicare becomes primary.

[Sara]

Oh, he's on it now.  We did get a letter from the SSA letting us know he gets Medicare.  So I guess at least the social worker or whoever did something right.

[Rerun]

Did they tell you that you have to pay a $80+ monthly premium? 

Mine got delayed because the stupid social worker didn't sent in the paper work TWICE!  I finally got my card and premium bill for $755.30.  I'm sure I'll get my money's worth! 

[Mom3]

Having just changed doctors for myself and my son, I'm happy to say it can improve.

I wonder if we had the SAME doctors Your spouse is not in SC by any chance?

Mom 3

[Sara]

LOL No, we are in Florida.

[Mike]

Joe isn't told about the possible small risk for getting hepatitis from the dialyzer until I ask about it.

Just one thing you should be immunised against hepatitis well before starting dialysis. I was about 4  or 5 years beforehand also it is essential to have that for the transplant too.

Mike

[Sara]

His was kind of an emergency start, but I do think that during his whole transplant work up thing he got that vax.

[jbeany]

Having self-diagnosed my diabetic gastroparesis, I understand completely!  I had to bring along the print outs from my web search and ask to be sent to the dietitian so I could figure out how to eat a diet that would control it.

I have a sneaking suspicion I'm going to have to educate my nepherologist about NX Stage, too!

Shouldn't we at least get a discount if we've done more research on a subject than they have?  A coupon for 3 free visits or one blood draw?  Something!

[vandie]

Unfortunately, or maybe fortunately, we have to take the driver's seat in our medical care and let the doctor be the passenger.   
I have passed the point of expecting them to know all the answers.  I am constantly following up, constantly doing my own research on a lot of things. 
This website has given me a lot of information and a lot of courage to take care of myself because the doctors and staff, although they mean well, are just doing a job.  They can leave it at the door when they go home.  We, however, take it with us wherever we go.  So we need to constantly be on the ball, and that can be exhausting and overwhelming.
 

[livecam]

How about a new Doctor Sara?  Why waste your time on your current one?  Through all of this a patient has to be assertive.  If you want on the transplant list you have to let them know and keep calling if things aren't happening.  During dialysis don't be afraid to ask for the nurses and techs that you prefer.  If someone is screwing up make sure they don't touch you twice.  Above all be compliant with the diet, fluid restrictions, and dialysis attendance.  Do what the transplant center tells you to do.  It is your life and you have to look after it.

[Sara]

I agree with you, but Joe likes to give people chance after chance after chance, and I can only do so much pushing.  Thanks for the tips though.  I do try to encourage him to stand up for himself, because we all know we can only count on ourselves.

[vandie]

I agree with you, but Joe likes to give people chance after chance after chance, and I can only do so much pushing.  Thanks for the tips though.  I do try to encourage him to stand up for himself, because we all know we can only count on ourselves.

And our loved ones!!