How do you convince the center and nurses that you have a life

[Sydnee]

I am not looking forward to PD training or starting dialysis. 1 of the reasons is the how they treat Ed. they seem to think he just sits around waiting, that we have no life.
Other than the fact they let him only train for 4 days instead of 5 they have not worked with him at all. They have already told me that they will not let me cut my training. After all "you don't work" I just take care of 4 children and home school them.

They call Ed up and tell him he needs to be at the clinic for his blood draw in an hour even thou we asked for a later time and they had it on the schedule. Or the fact we tell them we can't be there after 3pm on Tuesday so that is when they made the clinic appointment we told them more then 3 times before they made the schedule.

They only concessions they seem to make is for Ed's work. He works Fri- Sun so he doesn't get many.

How do we explain we have lives and kids?   

[Grumpy-1]

Keep at it is all could say.  Maybe contact the top of the hill supervisor and let them know the situation.   Keep  until they get it.  We do have lives to live and should be at their beck and call.   Grumpy

[JLM]

You may try speaking to your doctor - or is he/she not in your corner either?

[Tío Riñon]

While you are a patient of the clinic, you are also a customer and ultimately you should have the final say in your treatment!  Your clinic is only able to get payment or reimbursement for services they provide.  You need to explain what your needs are and if they can't be met, politely explain that it won't work.  Get your appointments and agreements in writing.  I communicate primarily with my team via e-mail so most information is documented.  Also, get and hold onto appointment cards so that if they call to re-schedule, you can attest that there is already a scheduled appointment and you'll see them at that time.  If my clinic asks me to do something that I can't manage, I explain the situation and give an alternate option.  I definitely won't show up if I have other pressing obligations.  There is no payment if services aren't rendered. 

Luckily, I have a pretty good team.  I explained that I couldn't continue to take time off from work to come to clinic.  The nephrologist and staff found a way to accommodate my schedule.  When I need to test for adequacy, I explain that I won't collect urine at work and we figure out a weekend or other off-time to get it done. Basically it is finding compromises to make the system work for everyone. 

Good luck on managing your situation.  Of course, if possible, you can always look at another facility.  That's my ace in the hole if I need it!

[Sydnee]

That you,

So just keep at it is the consensus.
Ed is really easy going so never seems to get bothered by all the changing around. We do get the appointments (clinic days and blood draw) in writing. They did the whole year in March. We told them a month before they made the schedule that we had to be done and out of there before 3pm (we volunteer at our church on Tuesdays) We told the nurse more than 3 times about this. When we got the schedule the appointment was 3 pm. We told her we can not possibly do that she left the room for about 10 minutes when she came back in we were scheduled for 2 pm. we thought good they listened. NO not really, on clinic day we got there at 1:50 pm we didn't get called back until 2:45 and didn't see the dr until 3:15. He apologized, (not really sure whether he is on our side, he acts like he is, and says we can make appointments at his office if we need to but that we would still have to come to clinic) In April we didn't leave FMC until 4:45 needless to say we didn't make it to Church. And YES all of our children were in there lobby the whole time that we were at that appointment. After all we were going to go to church for the awana program afterward. I had to tell our oldest to walk to work at 3:30 when I was sure we wouldn't be leaving to drive him. We went and got ice cream for the kids afterward since we missed awana.

Our doctor does not like FMC at all, but it's the only dialysis center around. The PD nurse at our clinic left the beginning of this year. Now the nurses from Fort Collins (50 miles away) take turn to come up. So to find a clinic that these nurses are NOT at would be an 80 + mile drive one way Longmont maybe even Denver would be the closest.

The Centers head Nurse (Jane) knows that I'm upset about this. Is there someone else that I'm missing?

Do you think it would help to bring the kids into the exam room? I think that might be something to try. Since most everyone they see is much older they might not really know that we have kids.       

[JLM]

Bring them ALL in and bring some of your neighbors with you also.........interesting sight, I may add.

[kyshiag]

I too was dealing with a similar situation and bending myself in knots trying to make what they wanted work for my husbands sake.  And he would just come home and give me the directives they'd given him without even asking if there were other options.  Finally, it occurred to me that if this continued, I would also be out of a job.  I just simply started countering what they wanted with what I needed.  While I will admit that his nurses never said anything to me, they did begin to make comments like, "If its okay, with your wife."  However, at the end of the day, they did work with our schedule.  So, just keep asking for what you need and make sure you word it as a need.

[BattleScars]

Very interesting, I too had this very problem in the beginning. It was crazy, they would treat me like I had no choice or say when my appointments were just because I wasn't working. They had me going into Boston for labs nearly every other day and if I objected they treated me as if I wasn't complying. The same thing happens now if I miss an appointment, we had a major snow storm a few months ago and I wasn't going to risk going in. Here's the problem, my renal dr is only in the office on Thursdays and if I miss my clinic appt I miss the appt with him and they won't reschedule until the next month.

Here's how I avoid this, I told a white lie and said I was working even if I wasn't. I mean what business is it of theirs what I'm doing with my personal life anyways? Then came the questions like what am I doing for work and they still question me every time I go in. But it has helped them work with me instead of just going in when it's convenient for them. You have to put your foot down and let them know you have a life outside of dialysis and they need to respect your needs.

[amanda100wilson]

I do agree with you, but it is training and then it is one.  Just a thought.  Is your husband seeking to get a transplant?   This sort of issue may be factored into the decision-making process when determining if your husband is a suitable candidate for transplant.  There reasoning could ho like this, "if they can't factor and facilitate dialysid trainig into their life, how will they do so with transplant care?"  the early days after transplant can be onerousm, particularly if there are problems,, with frequent lab draws and clinic vists (deoending on the protocol of the transplant unit).

The other thing is that there has to be give and take on both sides, and a degree of negotiation.  That being said, I find it ver presumptuous that just because you are not working, you can just drop everything, particularly when you have four children and the summer school holiday is coming up or has strted (although I am not sure of the ages of your children).  Suggest you sit down and write a timetable for the times that you can do it, and see if hat helps them favtor you in at times that are amicable gor everyone.

[Sydnee]

Yes, my husband is on the transplant list and has been even before dialysis.
I can't tell whether it is clear to you that BOTH my husband and I will be on PD. Ed start PD in August preparing to train the PD Nurse came to him and said I know you work Friday through Sunday so I'll set up your training for 4 day instead of 5. She came to him.  She then turned to me and said don't think you will get shorter training when it's your turn after all you don't work. I should get 2 hour training after all I've had how many months of in home training LOL. I set Ed's machine up for him EVERY night he works (working 12 and a half hour shifts is hard on him)

We homeschool our children so the summer doesn't real matter either way to us. Our children are 6, 12 (last Sunday), 15, and 18. None of them drive yet. We couldn't afford insurance of $100 a month just for Gehlan. So he had to have a stable job before he got his license. He still has 1 year of highschool left (he chose to take 5 years, so he could get extra community college classes) Gehlan is now working good hours are Wendy's (fast food) I have to drive him until he gets his license.

My problem with this is (it seems at least) that the PD nurses and staff will negotiate with you or work around your schedule ONLY if you are WORKING outside the home.
It's not just Ed and I either last clinic (I wasn't with Ed) Ed was talking to a guy in the waiting area. Ed found out the this retired truck driver watches his niece after school she is 6. Ed was scheduled for 2pm and didn't called back until 3:15 the truck driver's appointment was after Ed's there was NO way he would be there to pick his niece up are 3:30.

I hope I made my concerns more understandable this time. Yes we are still trying to negotiate and work with the clinic and nurses but it's really hard. Especially when you tell them (even in writing) that you need to be OUT of clinic and on the way to church by 3 pm and the schedule your clinic appointment for 3 UGH.   

[amanda100wilson]

Oh, well, I didn't know that and to me this is absolutely ridiculous.  If they are not more accommodating, I suggest that  with your feet and go elsewhere.  They should certainly modify the training in your circumstance.

[Desert Dancer]

I would second Amanda's sentiment and tell them you will go elsewhere if they can't accommodate your schedule. Just because you don't do PAID work doesn't mean you don't have a full-time job and if they can't understand that then I don't see any point in dealing with them any longer. Co-operation is a two-way street and you're not some naughty little child.

If you don't intend to try for a transplant there's really not a whole lot they can threaten you with in regards to non-compliance. Force them to stick to your original appointment times, make it crystal clear to them what your schedule is and refuse to show for appointments they make outside the time frames you have given them.

I would also suggest you put all of this in writing. Send copies to the medical director, the social worker and anyone else you can think of. I don't know if this is a situation the ESRD Network would involve themselves in but that might be worth thinking about as well.

Unfortunately sometimes assertiveness is just not enough and you've got to become aggressive about these situations. You DO have a life and you need to make that so clear to them that they cannot possibly miss it. They're obviously not listening so it's time for action.

[tito]

I guess I'm lucky. My PD clinic is at Faulkner Hospital in Boston, run by DCI, Inc. They are wonderful! My nephrologist is at the hospital every day, and even though I see him for clinic once a month, he is there in case of emergency. I say go to another clinic!