No respect for patient

[Savemeimdtba]

Ever since my nurse left I have had nothing but trouble from my PD clinic.. they call two days or a day ahead of time saying I need to come in (I don't drive, it's not that easy) but I always try to make it work.  Last week they called me on Monday wanted me to come in on Wednesday and I could not find anyone who could do it, everyone was working - I asked them if I could come in on Thursday or Friday, they said no, they needed it done as soon as possible 'cause the Dr is going on vacation... well, I said I would try to find a ride but I couldn't.  So I talked to them and they said they would make another appointment, haven't heard from them til TODAY, they want me to come in now and get labs - I told them, I couldn't everyones at work - they say I have to so I can see the Dr. on Thursday morning (again on the last minute) , and if I don't then I can't continue doing PD.

WTF???  Is my life and everyone I know supposed to stop because they can't get a schedule together?  So, my mom had to take off work and is on her way to get me... I am so frustrated with these people!   Now I have NEVER missed an appointment before, labs or clinic visit - I always try to work with them even though it isn't always up to me.  There is no reason to be treating me like I've done something wrong because I can't jump when they say with very short notice.

Not to mention, I STILL don't have the medicine the Dr. prescribed 2 months ago so what good some labs are going to do.. UGH!

Ok, I'm dine..

[jbeany]

Isn't that frustrating?  My clinic liked to schedule fistulagrams and then hand me the appointment card only a day or two before.  I could drive myself to dialysis, but not home from surgery, so I had to find someone to take me.  It was easy in the winter, since I live in a seasonal tourist area, and most of my friends and family have time off.  Summer, on the other hand, was nearly impossible, as most everyone around here works two jobs then.  After about the third time of my simply handing back the appointment card and saying, "No, I can't get a ride then.  I need more notice."  they finally gave me the number of the scheduler at the hospital, and let me make my own appointments.

I realize my life revolved around dialysis, but everyone else I know has a life that doesn't just stop on a dime!

[jennyc]

Why do they make it soooo hard? Our clinic is run from a satelite centre run at a major hospital. i go in when i chose for transplant bloods (so long as it's the first 10-15 days in the month). If i need DR bloods i go in when i can a few days before my appt. I manage my own appt with my Dr and i book it on my way out of the last visit (3 months in advance).

Call them the PD nazi's and see if they get the picture. Do they think just becuase your a patient that you have to live for PD?

[RightSide]

I have the opposite problem from you:

I have to make an appointment to see a specialist or a vascular surgeon weeks in advance--sometimes as much as two months in advance.

And then, all too often, around 5 or 6 PM on the evening just before my appointment, his receptionist will phone me to tell me that he has to cancel the appointment!

This had serious ramifications.  My fistula was giving me some trouble.  I made an appointment to see my vascular surgeon about it.  He canceled.  Then I made another appointment.  He canceled.  Then I made a third appointment. By this time, six weeks had elapsed--and my vascular surgeon told me that my fistula was completely dead and I needed to have an entirely new one made surgically.

[tyefly]

   Rightside......    That would of pi...ssed me off big time......    I hope that never happens to me......

[hurlock1]

Well, when given an ultimatum, the best thing to do is call their bluff. Don't call them make them call you. It might be good to get a lawyer.

[peleroja]

I know what you mean.  When exactly did the patient become totally unimportant?  Six years ago my neph said she wanted to be the only one to handle my blood pressure.  So the BP has been steadily climbing, and when I call in to ask what to do, the nurse tells me the neph said either go to urgent care or see my primary doctor.  WTF???  I literally stormed the castle and demanded to see a neph, any neph, who would take care of my problem.  (Yes, it got taken care of)  What part of "the kidneys control the blood pressure" did she not understand?  Then today I go in to get my Epo and discovered that a week ago they lowered it from 22K to 20K.  Hello, I'm the patient, I think someone should have notified me!

[Plip]

My series of respect issues is different...it's not scheduling, it's the conflicts between my body, the meds and actual treatments. After almost coding me twice they finally switched how they cycle me. They finally quit trying to challenge me and adjusted my listed dry weight. This helped with the severe muscle lock up experienced in the final 45-60 minutes of treatment. I still have some weird issue with crashing BP in the final phase, I hate it, but oh well. My current issue that is unresolved is the meds. After telling them the toprol just doesn't work, they again doubled the dose. I don't care if the pharmaceutical company pays them to prescribe it...it doesn't work, doubling the dose over and over for no effect isn't common sense. There's nobody home.

So I'm choking to death on pills that don't work. On the scheduling issue, my center threatened me with a nice lil term called AMA for not meeting their schedule. Which in essence means I have to lose my job and insurance or face no treatment...there has to be some legalities involved, but I have no idea where to go from here. And all that simply to have a Merry Christmas and Happy New Years. Maybe I can just chew up some LOA or sick leave during every national holiday ? I can still drive, but not if I can't afford the car or a place to drive from.

[Chris]

What about calling the doctors offices and not go through the clinic? Go over the clinics head and talk directly with the doctors office. That way you can schedule an apointment ahead of time and make arrangments for transportation. Does your town/city have paratransit? Usually discounted or free transportation paid by the state to the regional transportation authority., well atleast in Illinois and this is of course if your from the states (sorry I can't remember). Again if your from the states, look into your states Medicaid, here they will help pay for approved transport services to and from dialysis.

Sometimes you have to get fiesty with these nurses, if they get fiestier, so do you to get your point across and make them understand and come up with an answer.
Sorry your having a difficult time.