Not going back to home dialysis

[Adam_W]

I found out that the home dialysis centre will not take me back at all. They feel that because I had some problems with compliance due to burn out, that I will ALWAYS have problems like that, so they have denied me. It's the only home centre in the area so it looks like I'm stuck on in-centre until I (maybe) get a kidney. I have switched to a very small centre just down the road from me. It's very relaxed and the people are great. I'm still doing self-care, in fact I'm the first ever person at that centre that does self dialysis. I sure do miss being able to dialyze more frequently, though.

[Rerun]

That sucks Adam.  I can see compliance when evaluated for a Transplant, but home dialysis?  What do they care?  You are the one doing it or not.  I don't like that much control over my life. 

So if you miss or come late are they going to say you can't come anymore?  Geez   

I'm glad you do self care at least you have control over that part.

[Whamo]

What are "compliance problems due to burn-out?"  I'm not bagging on you.  I'm just curious as to what happened.  I had a scare this morning, stomach pain, but my urine was not cloudy, and the stomach pain went away.  I hope it stays away.  I think it was something I ate.

[cattlekid]

I have the same question as Whamo.  I just passed the one year mark on home hemo and I can definitely see where burnout can be an issue.  I would think that the clinic staff would be trying to do anything they can to help you with the burnout issues instead of just writing you off.  But then again, if they just see you as someone who is hosing up their numbers, then I can see where they could discharge you as you have the (sucky) option of in center. 

The good news is that at least your in-center clinic allows self care.  I've had to dialize in the hospital twice since I've been on home hemo and both times, I told them in no uncertain terms that I am the only one who cannulates myself.  Of course, they only had 14 gauge needles so it was like sticking a garden hose in my arm.  I have learned now that I should probably bring my own needles if I have to go back in the hospital before I get a transplant.

[Adam_W]

I had missed some treatments and gotten a few labs and treatment sheets in late. I was going through a period where I was having some depression and burnout from doing HHD for five years straight. When my dr suggested I go in-centre for a while for a break, I agreed with him. He said I could do in-centre for a few months and then go back to HHD. After almost six months I was told by the HHD nurses that they would not take me back because I had those compliance issues, even though I was no longer depressed about anything and was eager to get back to doing well on HHD. I've been on in-centre now for almost nine months and I'm trying to put the whole thing behind me. I'm not doing too bad, I love the people at the small centre I go to, I have full control over my dialysis itself, and as long as I'm careful with my diet, I'm doing ok health wise. If I dwell on what happened with HHD, I just get more depressed. Maybe I'll get a kidney soon and won't have to worry about dialysis at all.

[jeannea]

I hope you get your kidney soon. It's sad some of these people have no compassion for things like depression. Like they would be able to do dialysis without depression. Hah!

[kit78]

Prayers are with you to get a kidney soon. Hang in there!

[katieking1981]

I'm the care partner for my boyfriend's home hemo and I can see why you burned out after 5 years. It really surprises me though that the center wasn't more supportive and helping you come up with solutions. I hope it all works out for you and your kidney ASAP.

[The Noob]

go over their head if you have that option. or take your check to a different center, if you can find one close enough. i don't think its up to the nurse/clinic. i think its a decision for the neph.

i really hope our experience is not the norm. but after being with 3 different clinics, there is really no burn out care for the patient or caregiver. we did start a support group when he was in center. but centers wanted no association with it.

all we have been told is the he can come back in center. they would refer to social worker, who had less answers than we did. as they put it: they are a business that offers a service, its up to us to use it and handle any problems.

[geoffcamp]

I think this is BS!!  Is it any less likely you won't be non compliant going into a center??  I'm not talking about you specifically but in general. So you missed a treatment or two or got labs in late. It's not like you just can't not show up at the center!  I just think they are finding ways to bill insurance for more money and not allowing you control!  Did you fight this?  Tell them you will work at it and try to be better at getting things in in time?  If you really like home dialysis better in my opinion you are much more likely to be compliant because if you don't like going in to the center there will be times you simply won't go or change times and schedules. Maybe a good heart to heart with someone who can make the decision about going back to home dialysis will help. Put up a fight, lay out a plan. But I really think it sucks if you like home dialysis that they can MAKE you change just for a couple of mistakes. I don't know your entire situation, like did you end up in the hospital because you were not getting in enough home dialysis or were there any other complications??  Did they actually sit you down and talk to you or warn you what could happen??  I say stand up fight it if you really want to do it at home and if there were no complications DO NOT let them put this in your medical records that you accepted you were non compliant. Because that affects your standing on the transplant list. Just my humble thoughts. Good luck man. G.

[CebuShan]

I agree with geoffcamp!  There should be someone else you can talk to.  Explain to your neph about burn-out and that you aren't depressed any more!
Fight for it, don't just accept what "they" want you to do!