Another Clinic?

[AnnieB]

Okay, I have a question I'd like some feedback on. When I went to dialysis Sunday night, there was no one to "stick" me but the nurse who can never seem to get the needles placed. This is the second D session she's tried, but struck out. The nurse who was supposed to be my "sticker" was out sick. And there was apparently nobody else around to try to get me on the machine. There was a tech, but she didn't even try to get access. Anyway, after losing the arterial needle, the nurse just pulled both out and told me I wouldn't be dialyzing that night.    Her rationale was that I was still peeing, and then she said something about my Creatinine level not being too bad....actually she asked me what it was, I said about 4.5 and she said "Oh, the doctor's office paperwork said it was ***2***"  2??? My Creatinine hasn't been at "2" for over ten years......

So, the only person who was available to "stick" me was the one who can never seem to be able to do it. And so I wound up missing my dialysis session. Which, although I really am not thrilled about doing dialysis, I still recognize it's a necessary evil if I want to be on this side of the grass. I am really starting to be concerned about this dialysis center, even to the point of beginning to feel unsafe about dialyzing there. Combine this with a nephrologist who I haven't been having real successful communication with, and it's a real lose-lose. I'm not sure who I should even be communicating about this with, since I'm already "in treatment" at this place - I have started looking into other centers, but I don't know how long it will take me to find an alternative.

When I talked to a nurse at another center, she told me I should talk to the administrator at this facility because the nurse thought it was strange that there was only one person available to try to access my fistula (especially since it was the one who can never seem to get it). She told me it was wrong for me to have to miss a dialysis session for that reason.

So does anyone have any comments or suggestions? I almost wish I'd never started dialysis, but waited instead until I was really sick. I don't understand why everything seemed to go to hell on me all at once after I started, when I made such an effort to try to get things set up in advance (okay, maybe I am feeling a little self-pity here. I recognize there are a lot of people worse off than I am).

I have started looking into other centers, but I'm still nervous about the one I'm at now. I probably do need to talk to the center administrator, since I really don't want a repeat of last Sunday. It's been 5 days now since I had a dialysis treatment. Good thing I'm not retaining fluid yet...

[Blake nighsonger]

 ...,,,,,Yes, good no fluid, that's great! . Once my fistula got used more it was easier for Else to "stick"( as you know). I suggest doing what your doing. Get your rest , relax best you can. That would be exciting to go to another clinic, meaning that going there was your idea. 

[iolaire]

When I talked to a nurse at another center, she told me I should talk to the administrator at this facility because the nurse thought it was strange that there was only one person available to try to access my fistula (especially since it was the one who can never seem to get it). She told me it was wrong for me to have to miss a dialysis session for that reason.

This is good advice. Every person should be able to stick you, if its challenging they should be teaching each other whatever tricks are needed.

Second (sort of a jackass move but...) call you doctor and ask if you really need dialysis, explain that the nurse could not stick you and said dialysis not needed.  Ask if that is the case why did your doctor prescribe dialysis?  That should cause the Dr to ask the center why you are begin told that and help motivate them to get their act together.

Regarding moving clinics - I feel that would be most easiest to do well you are fresh to dialysis before your routines are set.  Personally it probably would be easiest if I went to a center by my work but I'm slow to try to change because I'd have to get new nephrologists and maybe deal with less favorable shift times.  But had I done it in the first month or so I would have figured out my sifts quickly before I got used to the current schedule.

[cassandra]

Dear Annie please move center, and do talk to the administrator. You have that list, so call them if they have space etc.

Good luck, love and strength, Cas

[Charlie B53]

You may not be SHOWING excess fluid, but you ARE retaining fluid more than normal.  Given enough time without dialysis it WILL show and you will get sick again.   Effective complaints must be made to force the clinic to improve their services.    Even if you switch clinics, these improvements need to be made as you may never know how many others just like you are not receiving the treatment they need from this same clinic.

I wouldn't just talk to the Administrator.  Mere words do not seem to get enough action.  Making your complaint in WRITTING, with a copy also sent to the certifying or overseeing government agency will get things hopping.    One of the other regulars will hopefully chime in the the correct information.   This or other poor treatment occurs far too often when staff only cares more about collecting a paycheck than actually treating patients.

Like I said, even if you change clinics the written complaint really needs to be made to help protect the rest of the patients.

[PrimeTimer]

Wow! So sorry you are going thru such trouble! This isn't right! I thought regardless as to whether or not a person retains fluid they still need dialysis to have their blood cleaned of toxins, etc..

If my husband were treated like that by his center I'd be pretty darn upset and so would he. Definitely make an appointment to speak to the administrator in private and give that person your complaint and concerns in writing. Meanwhile, it won't hurt to look for another center and Nephrologist. Maybe "interview" other potential centers and nephs and tell them upfront what this last center did/did not do and what your expectations are going forward. The next center will either be on their best behavior after hearing that or else if they don't take it seriously, scratch them off your list. Good luck, keep your chin up and don't give up being your own advocate!     

[LorinnPKD]

AnnieB,

At my clinic, there are several techs who are qualified/certified/experienced in working with a new fistula -- and by new, I mean newly in use and for less than six months.  Because I go on the quieter days, sometimes there's just one tech available who has the certification.

I'm new to this, too.  I've just been doing this six weeks or so and my experience is similar to yours in that sometimes the stick just doesn't work out (or I have some infiltration that causes issues, which again I know can be somewhat common for new fistulas -- I have two family members who have gone through this before me) and I've had to either come in the next day or skip a session (with the nurse's guidance, of course) until my arm can heal up.  It's been fine.

Like you, my creatinine is relatively low compared to the other patients -- I'm running at just about 6 right now. I'm not retaining ANY fluid at all, so I don't have to worry about fluid buildup. And my labs look pretty decent.  Skipping and rescheduling has worked out OK. (My sibling has had to skip/reschedule a session every now and then and their function is zero; they go to a completely different center.)  Five days does sound like a long time, though.

I absolutely believe it's VITAL to go to a clinic where you feel safe, respected, and confident in trusting the professionals who are treating you. Where people will answer your questions while you are getting familiar with the process.  This will help you make the best decisions for your health.  At my clinic, there's a lot of discussion about treatment and the nurses and techs include me in that, which is wonderful and I expect nothing less.

Do know, though, that new fistulas are tricky, not everyone at a clinic may be qualified to stick you, and the occasional infiltration/bruising and skipped session may happen no matter where you go.  That stuff's not really negotiable sometimes, and may happen regardless of the center you choose.  After your fistula gets stronger (are you doing the squeeze ball?) there should be fewer hiccups.

[SutureSelf]

Others have already given you some good suggestions.  I especially agree that you should talk with the Facility Administrator about your issues as well as putting them in writing.  It's good to have a paper trail.  While it is your right to change clinic/nephrologist, you would look in a better light to follow grievance protocols and inform the FA about your problems and give her the opportunity to get things resolved to your satisfaction. Even if feeling attitudes from the floor staff won't change and that you're looking elsewhere, it's still a prudent plan of action.  As for your letter to the FA, send copies to your nephrologist, Shane Perry, Executive Director of ESRD Network 12 - The Heartland Kidney Network and Patrick Brophy, MD, the Network's Medical Review Board Chairman.  I gave you info about ESRD Network 12 in response to your "Rant" post. The ESRD Networks are contracted by CMS with one of its functions being to help patients resolve grievances with dialysis clinics.  Consider utilizing the Network's services:

Heartland Kidney Network
920 Main St. Suite 801
Kansas City, MO 64105

Main phone: (816) 880-9990
Patient toll free: (800) 444-9965
Fax: (816) 880-9088

http://heartlandkidney.org/about_us


Also, like in my response to your "Rant" post, I'm once again suggesting you contact the head nurse/facility administrator of the out-patient NxStage clinic in the St. Louis area.  Set up a time to visit when other patients are receiving treatment.  If any staffers are going to be good "stickers" and patient oriented, it should be at a Nxstage clinic.  Since you don't like running long hours, maybe doing shorter times but more frequently will work best for you.  It wouldn't hurt to meet with them.  You might be able to get a different and better perspective on things.

http://www.nxstagekidneycare.com/locations/st-louis

NxStage Kidney Care
1076 Old Des Peres Road, Des Peres, MO 63131
Phone: 314-925-2522 

[Relentless]

Been on dialysis 6 years and never had that happen. How could they send someone home knowing no dialysis for that long? I would of been pissed just me wasting my time driving up there. I totally agree with u when you say that you don't like dialysis but you would rather get it. I've missed maybe 1 day in 6 years because I had pretty bad cold so I missed Wednesday. I'll be damned someone telling me to not get treatment because they don't know what to do. It's a freaking dialysis clinic!!!!!

[Michael Murphy]

There is a group called CMS (Center for Medicare and Medicaid  Services) they are the 600 pound gorilla in the dialysis world. Part of there charter is insuring that patients receive proper care.  They also set a minimum staffing level for dialysis centers.  It appears your center would be in trouble on several,points. Sending you home without treatment is wrong, I also question the staffing if there is only one nurse or tech available.   Speak to your centers manager and ask for the contact number for CMS they are required to tell you how to contact CMS.  In  addition if this should ever happen again go to the nearest hospital and explain what happened since your treatment is important the hospital should evaluate your need and provide dialysis if you need it.  You centers staffing issues should not be allowed to impact your health.  By the way CMS will not be pleased by the centers treatment of you.
Good luck remember the center exists to provide you care you are important and should not be abused in this way.

[AnnieB]

Problems are continuing at this clinic. Within the last week, I was sent home twice because they couldn't get me. Since one of those days was Thursday, I came in on Friday to get a make-up session. Thankfully, that one worked. I did ask the FA Friday if I could switch to day shifts (where I am hoping for more proficient "stickers"), and she was going to check. No one told me the schedule had been changed, so when I went in tonight, they were not expecting me. Since I was there, they were going to give me a session anyway.

Well, the one person who is able to get me was there, and I began dialysis. Until lo and behold, about 1 hour and 15 minutes later the machine kept alarming and the tech told me she was going to take me off, because it stopped running. When I asked her what would cause that, she just said "I don't know" (?). I asked the nurse and she thought that my fistula might have been spasming. So I only got a little over an hour on dialysis tonight. Again, the suggestion was for me to come in tomorrow. I left without talking to anyone.

The nurse just left me a message that I am expected in tomorrow at 11:30 for my (now standard?) day shift. Don't know if I mentioned this, but they still think the problem is me, so my nephrologist wants me to see a vascular surgeon to see if my fistula needs any reworking. He gave me a referral, but the FA said that this guy has a long wait time for appts. For whatever reason, my neph thinks I should see this guy instead of the person who took over the practice from the surgeon who created my access in the first place (but who is now retired. He is one of the top doctors in the area). He said he thinks I should see a doctor who has more years of experience. Whereas, I actually think my initial surgeon probably can be trusted to have given his practice to someone who knows what he's doing, years of experience regardless.

So here's the story. I went ahead and called the dr. my neph recommended, but am also going to call my own vascular access surgeon and ask him to take a look at my fistula. Tomorrow, preferably, and ask him if he can check me out asap. If there really is a problem with my fistula, I want to know. On the other hand, if the problem is that they're just not good at sticking, I want to know that too. Regarding the clinic, I have already been checking into the NxStage clinic and am attempting to transfer over, once I get a nephrologist (or keep the one I have now if he gets privileges there) who can follow me there. I made a tour of the center, and was told that they do have times available once I have a nephrologist who can follow me. I am hoping within a short period of time I can make the change. NxStage sounds like a much better way to go.

I like the suggestion about going to the hospital if this happens again (and yes, it did happen again already, more than once). If this happens yet again before I can switch centers, I think I will take your advice. If they can't dialyze me at this center, I still need dialysis, obviously. I should not be penalized for their lack of training or whatever the problem is. I also agree with writing letters, notifying CMS, etc. This center has a big board in their anteroom stating that CMS declared them a "4 star facility" for 2015. Don't ask me how they got *that* rating. Mostly right now I just want to get out of there before my health takes a serious nose-dive. But I guarantee that CMS et al will be hearing from me about my experience.

[Michael Murphy]

Look this you still pee bs is absolutely wrong, I still pee, a lot. I am not fluid restricted I go so much however if I am shorted or if I shift from mwf to tts I feel like crap due to the three days between treatments.  I am on dialysis because I need it, CMS puts out statistics on every approved center check them and find a decent place to go.





sp mod Cas

[Fabkiwi06]

Raise hell. I still pee too and they have NEVER shortened my dialysis for any reason.

Find another center ASAP. Better yet, if you are in a position to do Home Hemo or PD, find the quickest way to get to that option so you can make sure you get the treatments you're prescribed.