First Care Plan "Meeting" TOTAL DISAPPOINTMENT!!!!

[DomJDavis1985]

So i am fairly new to this HemoDialysis thing (was just diagnosed with kidney failure less than a month ago) So after being at my Dialysis Clinic for 2 weeks i was told last week that i would have my first care plan meeting w/ the dietician, social worker, a nurse, and a doctor? Supposedly this meeting would last for two hours....and i would be able to look over lab results and talk with my team of specialists about how i was doing with the dialysis, ways to make it better....and to ask any questions and get questions answers...i was really pumped about this and looked forward to the meeting....

they had me sign a paper telling me that the meeting was on February 24th...i didn't realize what day the 24th was...and i was kinda groggy when i signed the papers so i just signed and went back to sleep, lol.....

later when i got home and looked at my calendar i realized that the day and time of the meeting was during a dialysis treatment (prior the doctors told me that the meetings would always be a day that i do not have dialysis so i could come and sit in the back in a conference room and have more privacy) STRIKE 1

so the next day i went to the clinic and i expresssed my concern...the nurse then told me that we would be able to still have the meeting...they would just have it around my Dialysis chair in a quiet section of the clinic if that was okay with me...of which i agreed
 
So the day of the meeting came....it was supposed to start at 11....i was at the dialysis center and hooked up to my chair by 10:45, ready for the meeting.....so 11 came, 12 came, 1 came, 2 came..then finally at 3:00 my social worker, dietician, a nurse,and some doctor that i never met before (not the other doctor who i have talked to several times and actually like) came....it looked as if they had already had a meeting without me...pretty much the doctor (who had a very arrogant attitude) said, "well your labs look okay, u need to increase your protein and hemoglobin levels.....go see an eye doctor soon.....and we are setting you up for a fistula soon in the next few months, nice to meet you Miss Davis" he then proceeded to shake my hand, press a few buttons on this machine...and walked away.

The Social Worker asked me if i had any questions...of course i did, but i was so pissed at this fake "meeting" that i felt like i was just getting orders spat out at me, that i couldn't even think of any and i just said "no"

My question...are all "care plan" meetings like this? i have another scheduled in 3 months of which i insisted that i want 1)to be scheduled on a non dialysis day and 2) i want to be there and i want to use the full 2 hours and 3)i need them to explain what the different lab numbers mean..i mean really? am i asking for too much....that first meeting was such a disappointment!!!

[carol1987]

very frustrating... i was on HD for a month and there was never a care meeting... they would just make their way around the room ... not at the same time different days..

One question I would ask about right away is why the wait to  place the fistula? They take time to develop so getting it sooner would be better than later.. 

[MooseMom]

That's appalling.  That's also why more and more people are chosing to do dialysis at home.

[paul.karen]

Wow what a joke as far as the seting up an appt. for a fistula in the next few months.
Are you sure you wanna do hemo?  Did anyone discuss doing PD?

What a bad starrt i feel you are getting.  Firstly you syhould meet all the people you mentioned but one at a time.  Not the whole gang at once.  I agree make your next appt. when it is good for you.
I feel lucky to have a doctor i trust and respect.  I do PD at home and see everyone at the clinic once a month.  We dont always talk (less i want to) but they always come by to see if i need anything.
My Neph always schedules me to be seen last.  And me him and the nurse will talk for an hour at least.  Usualy not about dialysis just talk current events ect.

Also you can pick your own surgeon to do the fistula.
You can pick a new neph--ask for the one you liked to be your neph?

Keep asking questions here.  You may be a patient but you do have rights.

[greg10]

Unfortunately that is the way many nephrologist affiliated with big chain clinics work.  That is they would schedule to meet a group of his patients at the clinic around the same time, meet with each for about 2 minutes or what ever they felt justifiable, then bill the whole lot to Medicare for the equivalent of a whole doctor's appointment.  The patients are generally so out of it and ready to bail near the end of the dialysis that they don't really care to discuss anything with the doctor.

That is one of the benefit of a nephrologist affiliated with a national dialysis center.  Shameful on those who practice medicine this way.

[cattlekid]

Unfortunately, I feel like I received the same sort of treatment when I started D.  I started on a Saturday, which I think threw them off, then the next week we had a blizzard, so everyone's treatment days and times got shifted around.  I didn't see a dietitian or neph for the first week and a half.  Now, I see a neph that I don't like, I find her too brusque and she doesn't know my history - and I think she'd rather deal with the elderly that don't question instead of a young person who doesn't think she's infallible.  They're fighting me right now on the fistula - I have my transplant clinic intake appt. on Monday and since I have several live donors who are willing to be tested, I do not want to undergo a fistula if I will have a transplant within a few months' time.  This is why I dread being on D long enough to go on Medicare - at least with private insurance, I feel like I have a leg to stand on when I'm not getting the treatment I feel I deserve.

[MooseMom]

Life is difficult enough without also having to fight the system.  Listen, since you have three months until your next meeting, you have plenty of time to gather your thoughts and devise some questions.  We're here to help you do that.  I want you to feel prepared and empowered when you next see these people.  So many patients just sort of opt out of their treatment...don't be one of them.  Don't let yourself be treated as nothing more than a glorified lab report.  Now is the time to prepare!!

[WishIKnew]

So sorry.  After 3 and a half years of monthly meetings I've come to expect very little.  I had a wonderful social worker who I really looked forward to seeing each month but, unfortunately, she went on disability (MS).  Her replacement is do totally distracted, like he can't get oth the door fast enough.  My dietician is a very kind but really dingy lady.  Chatty but not very helpful.  My nurses are nice and we talk a little but it's hard because there have been 4 different nurses since I started there - the turnover makes it harder to have any kind of rapore.  My nephrologist is a good doctor.  I've been with him for 25 years.  I like him and trust him but, unless I make a big scene, I get VERY little of his time and even less of his attention.  I will say that when I'm really upset he is great with me!  My care team meetings take 2 hours or more but my actual conatact time with any of them is never more than a few minutes.  I just spend a lot of time waiting for each of them to come in...

Any way, so sorry that this was your experience, especially the first time because you have had so much to process and deal with that if they had been attentive to you I'm sure it would have relieved a lot of your anxiety.

[sullidog]

My doctor only comes once a month. Our social worker will accept pripicy if requested which is in her office. Someone asked the doctor if she could see him privately in his office and he said no, so if I need to talk privately I talk to his practitioner on the phone.