Is this it ?

[RichardMEL]

Yeah I wonder how different countries actually take the compliance thing. I mean I know of patients are are anything BUT compliant and they've gotten transplants and the like (that's here, in Australia). Other places it is definitely a factor - and you can understand the rationale - if you can't stick to your medication/treatment schedule, how well will you cope with the care of a transplanted organ, having the anti rejection meds on time and on a regular basis, etc.

Actually come to think of it there was the case last year over here of a woman who received a liver transplant, she was (I think) a drug user, and basically she didn't take her meds etc and lost the transplant. The docs wouldn't allow her to go back on the list because of her non compliance. In the end she went to Singapore to get another transplant, but she died a few months later.

At this point for KS it probably doesn't matter that much - I mean she's often written about how she's had to finish early due for various reasons. The thing that I scratch my head at is the apparent unavailability of her nephrologist, or any specialist, to see her in a timely manner. I mean yeah I see my neph every 3 months, but I am pretty stable on dialysis. There's no need to see him more frequently, and as I've written earlier if needs be I can contact him via email or phone, or if he's not around then I can see one of the other nephs at the hospital. My nurses will call someone down if there are any questions or concerns. What I find atonishing is that clearly KS is NOT a stable patient and is having problems. Now I know they send her to various people for this and that and the other, but why is her neph not more involved and overseeing it all?

I guess what I'm saying is that I think it would be better that any change in the D schedule, time, etc should be organised with the neph's co-operation rather than without. The non compliance issue is real but it seems to me right now what is more real is KS's need to get stabalised. Constantly being in pain and throwing up is *NOT* normal for dialysis. Clearly something's not right with her and it shocks me that they don't seem to care. You think they'd want to do everything they could not just to make a happy patient, but to make their lives easier....

[MooseMom]

Being "compliant" does not mean you have to abdicate all responsibility or critical thinking when it comes to your treatment.  Refusing to go the 4th hour is just going to cause more conflict in a clinical situation for Ricky G that is already marred by strife.  So, take another approach.  I've always been told that all of my care providers and I are supposed to work as a team, and as a team member, I am certainly entitled to make some suggestions.

I'd have a conversation like this:  "Teammates, I am concerned that my condition is not stable.  I seem to do quite well for three hours, but the fourth hour consistently presents problems, and I would like to work with you to see if we can come up with a solution.  I am willing to experiment a bit and see what happens if I stop after 3 hours.  If it becomes clear that that is not enough, let's up it to 3 hrs fifteen minutes (and so on) until we find the point at which I am getting good dialysis and am feeling like I think I should feel.:

This is not being non-compliant.  It is taking an active role in your treatment, which is critical a critical factor in maintaining a transplanted kidney.

[romanyscarlett]

I've never heard of people in the UK being refused a kidney transplant due to non-compliance. I'm not saying it definitely doesn't happen but I haven't come across it. I guess if you were taking drugs or drinking a gallon of vodka each day then perhaps the doctors would think twice about keeping you on the transplant list but asking to cut down your treatment by an hour doesn't strike me as non-compliance.

The woman I mentioned earlier who only does 3 hours has had 2 transplants in her life time already so I know she hasn't been denied a transplant as a result of her decision.

If it was me I would calmly and clearly state my case to the nurses and the nephs saying something along the lines that MooseMom wrote. It's got to be worth a shot because from the sounds of things you're really being put through the mill at the moment. I would hate to be in your position feeling so ill each time and I think you're incredibly brave to keep your chin up. If doing 3 hours doesn't work out then at least you've tried.

[RichardMEL]

yeah I think MM was pretty much saying what I was trying to say (but didn't write very well). It's your body and your treatment, but you're part of the "team" (which is why I suggested making changes with the blessing of the neph-if you can actually ever see him!).

[Pam]

At my clinic Fresenius USA, they have evaluations every 3 months. The evaluation includes Drs., Nurses. PAs. social Worker and Dietitian. We are given the day and time, then we have the option of being there. My treatments go fine and I don't have any problems so I've never been to a meeting. But I think it is a very good way to be involved in our treatment.
Pam

[KICKSTART]

Well today was the worst ever! But firstly i have read all your latest comments and i understand exactly what you are saying about time/neph etc and working together with the nurses. I have been told till im blue in the face ..and several arguments at the beginning of all this that ,'the protocol is 4 hours' we (the nurses cannot change this and you can be sure you WONT be getting enough dialysis/clearance) Up until this past week if i have asked to come off early, which was nearly every session, i was taken off ok, but met with glares , stoney faces, silence and a lot of banging stuff around ! So much for compassion !
Well today i think they finally realised just how bad things are for me , when i started an hour in . In just one hour my BVM dropped to 86 and they stopped my fluid being pulled off so it would have chance to rise again . It didnt !  So i carried on for another 2 hours just taking the minimum off , while throwing up etc ! because it was monthly bloods day and iron and epo all of which i needed. I got to 3 hours and bang everything started to spin like crazy , i couldnt stop wretching. They stopped the machine and got me off. I had to sit for a while because i was shaking and very upset. The upside I HAVE GOT AN APPT with my neph on tuesday and the nurses today finally realised something isnt right . Now how the hell am i going to find out what it is ? Is it time ? Is it an allergy?  Im sat here now 5 hours later more or less fully recovered and no doubt will be ok tomorrow, it all happens as soon as they put me on that dreaded machine .

Forgot to add ..compliance does not come into it as i am not and never will be on the transplant list ! ...neither do i drink a bottle of voddie a day or do drugs ...not yet anyway ! 

[Riki]

They can't force you to have 4 hours treatment. It's your body and ultimately it's your decision.

This is true, but it makes u a non compliant patient, which could hinder getting a transplant, at least thats what my dr says to me

I hate that word, non-compliance.  When I was a child, I had to go to clinic every 3 months in Halifax, NS.  At the time, there was no bridge from PEI to the mainland, so we had to take a ferry.  The day of the clinic appointment, a storm kicked up and the ferries were closed. When we called to say we weren't coming, they said that not showing for clinics was considered non-compliance. It took nearly 10 years for them to start having clinics on PEI, and we now have our own Neph, but he's rather elusive at times

[MooseMom]

Oh man, this is just awful.  I know dialysis is hard, but this is just absurd.  This is so obviously not working for you, and I'd love to know why.  It's all rather a mystery.  I am really eager to find out how your appt goes on Tuesday; I'm just very curious about this!  They really need to find a solution, and quickly.

[RichardMEL]

What astounds me is the lack of brain power of some of these rocket scientists. I mean your BVM drops to 86 AND you're throwing up - you're LOSING fluid every time you do that (sorry that's gross I know). So why would they even take a minimum off? It's like some folks are so rigid to the "protocol" that they can't think enough to go outside the square and put two and two together.

I *am* glad they have pushed through an appointment with your neph though. YAY!!!