I have a few medical complications on hemo. (had complications on PD too) that do not allow me to finish treatments or sometimes not being able to get a treatment at all. Needles to say this not only takes time off of my life span I also end up in the hospital. One time I was so out of it from missing treatments I literally lost a 2 day time span. Have no clue what happened for 2 days. There have been times when I could get missed treatment scheduled at other centers. Problem is now most of the time I can't. There are 7 centers in the vicinity and they all say that have no available chairs. NO AVAILABLE CHAIRS!!! God forbid the centers cannot rotate keeping ONE chair available for emergencies and such.
I am moving to another city and none of the local centers have chairs for me. The ONLY answer I get from everyone is "there is nothing we can do". So due to the the centers "policies" I am skipping treatments and not getting full treatments.
According to the ESRD network: "One treatment per week = 52 treatments per year This is the same as missing four months of treatments!! 15 minutes early each treatment = 39 hours per year"
According to to a study conducted by DaVita Clinical Research: For mortality, the rates were 11.48 per 100 patient-years among those who missed a treatment and 5.25 per 100 patient-years among those who attended the treatment.
Written by
checkman
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Your clinic social worker should be able to help with this along with your nephrologist. Most clinics can accommodate emergency patients but remember you may not be the only one and thus it's unavailable. Talk to your ESRD Network. Sometimes going up the chain slowly and minding attitude can help. There are many avenues. Lots of people travel this time of year and occupy available chairs as well. Is there a reason your own clinic cannot squeeze you in at other times? What does clinic policy have to do with this Best?
Have you considered Home Hemodialysis? This would be very accommodating to your medical needs. I've been doing home hemodialysis for almost 20 years. My schedule, my chair, my home. I make it work for me. No excuses to do this at home for me. If you really want it to work for you, then it will. Best of luck.
Thank you for replying. As I stated everyone I have spoken to (doctor, PA, social worker, nurses, techs, manager and Director) have stated "there is nothing we can do". I even filed a grievance with Fresenius. They carefully documented my issues (more than just the chair problem) and the Director came and spoke to me the very next day. "I'll speak to so and so, bla, bla, bla.... Nothing has changed. I'm sorry but there are not many avenues for "filing a grievance". ESRD network does not do what you think it does. esrd.ipro.org/providers/pat.... As far as travel, I have done this a few times and the centers could not accommodate me for my itinerary, I had to work around theirs which did not work out very well for me, no matter how far in advance to contact them.
Your comment "Most clinics can accommodate emergency patients". No they do not. There in lies my problem.
Your question " Is there a reason your own clinic cannot squeeze you in at other times?"
There are no available chairs! Again, there in lies my problem.
Just because a dialysis company says they will do so and so, and are there to make your life wonderful does NOT mean that is reality. It's just a bunch of marketing words on a web site, etc.. Granted, there are lots of people that try really hard but are stopped cold due to "company rules". They can't even come up with a solution to keep me alive longer. As I have stated, how about keeping one chair open between 7 local centers? Nope, they refuse to apply that solution. I'm sure thinking out of box just slightly they could put their heads together and come up with something, but again, nope. I even had to ask them to go to other companies in the area to find a solution. They could not even think about that idea on their own? Of course, it did not help, because, wait for it............THEY NO OPEN CHAIRS!
I cannot do home hemo, I am by myself. I have already gone through PD twice for several years and that no longer works for me.
If you can can up with specific organizations that could help me fight this that would be GREAT! It is not the company nor the ERSD network nor Medicare.
Your comment " If you really want it to work for you, then it will." You are joking. right? You have obviously not had to deal with road blocks I have. Lucky you.
Oh, you have no idea the road blocks I've encountered in my near 20 years of dialysis. I'm sorry you're encountering this. I wish there were options that could fulfill your requirements. I currently drive 140 miles each way to my support clinic. We live rurally. All my specialists are between 90 to 140 miles one way. May I ask what part of country you live and what type of medical problems prevent you from completing your treatments?
Are you asking for a specific time slot? Where I live there are many centers and as long as you are not demanding a specific time slot I thought it was always possible to get dialysis. ALSO< I understand that hospitals will provide dialysis if needed. So if you really want to fulfill your time on the machine, I believe you can get it done one way or another.
I don't understand this. My dialysis center would always find a way to come in an extra day if I missed part of a treatment due to a machine issue, infiltration of multiple needle sites, etc. At the very least, they could add on more time to your next session or two. Another alternative to talk to your nephrologist about is to go on the emergency diet that is extremely low in phosphorus or potassium(I don't remember which) until your next treatment. Please seek help from your nephrologist. Take care!
Thanks for replying. As I stated I have spoken to everyone involved in my treatment, which obviously includes the neph. I don't understand the potassium/phosphorus thing. I have those in check. After all the people I spoke to (AGAIN), including again, the regional director, I still got "nothing they could do". They were only looking within Fresenius facilities, and I had to actually ask them to look at other companies in the area. I was STILL told "nothing anyone can do". I happened to drive by an ARA facility and popped in to see about a chair (5 miles from my new place). Guess what??? I got right in! I started 2 days after I went there. So, HMMMM.... I guess everyone is welcome for me doing all their jobs! I will still have the medical issues that stop me from getting full or no treatments, let's see if they can accommodate me. Don't know yet.
Congratulations for not giving up! As you have figured out, you have to be in charge of your own treatment. It's a hard lesson that we all have to go through at some point or another. Good luck to you!
I really feel your pain and frustration. I live in a very rural area, love it, but there no dialysis within an hour from me. So my treatment takes a total of 5.5 hours counting 1 hr. of transportation each way. It's like we have to look at a new location based on availability of dialysis! But this is our life. We also have to consider our chances of growing old. I am 67, went to the emergency room and found out I had congestive heart failure and CKD. Pretty bad edema that I thought was due to my 5 food group allergies. I was finally diagnosed with the allergies 20 years ago , when allergy testing was $1500 and not covered by any health insurance. I went to a really good walk-in clinic in a very wealthy community. Sometimes you have to be creative about your health care and go out of the box to find your solution. Unfortunately we have to be out own health care advocate when there is no one to understand our problem. I am a senior, have Social Security as my only income, so I am eligible for everything from Medicaid and Medicare. As a graphic artist with 40 years of experience running my own business, I am appalled at what healthcare has become. Maybe you can get help from the national or local health department and make a complaint about the unavailability of chairs at your dialysis unit. Be your own advocate and stir things up and get what you need!
Sorry for the length of this but my experiences have been very complicated and arduous. Running into brick walls is commonplace for me. I have filed a total of 5 grievances with the IPRO ERSD network. Not one single time has that changed a single problem. They "cannot force a dialysis center to do anything". Only one person in the network bothered to get on a conference call with the staff and me to try to help. The other people did not bother with that and just took the dialysis center's side of the issues and again, nothing changed for me. They have been completely worthless for "helping me". They say they are patient advocates. HA!
When I was at Fresenius location for many years I had a medical problem that did not allow me to finish my treatments almost every time. Throughout those years, no single medical "professional" even tried to figure out what was wrong. I would constantly ask the nurses, NP's and Dr's if they could help me by suggesting they consult with other DR's and nurses, do internet research, research white papers, you name it I tried to get them to actually put an effort into figuring out what was wrong with me. Not one single person EVER did any of that. Everyone one of them just shrugged their shoulders and called me "weird". What do you think my frustration level was? Do you think my frustration manifested itself as anger at times?? At least they started accommodating me by sending me to other centers to get makeup treatments. One time the new manager stood over my chair and was screaming at me at the top of his lungs because I used to cover my head with my blanket to sleep. This was of course one of his many "new rules". They were no longer allowed to turn down the very bright lights anymore. He kept screaming that I would suffocate myself and die from covering my head. WTF?!?!?
I moved, well, I thought things could not get any worse, but boy was I wrong. This new center was/is the worst one I have been at. I still had the problem of not being able to finish my treatments and they literally REFUSED to find ways to get me the makeup treatments I needed. I know they had chairs available and they refused to let me use the isolation room. They also REFUSED to contact their other locations to try to accommodate my makeup treatments. At least Fresenius would let me use that room. I am very allergic to any of the adhesives they would use for covering my port, Fresenius had a special tape that worked great for me. This center REFUSED to buy this tape so I have to buy my own tape. They were refusing to give me my lab reports in electronic form, which they have to do according to HIPPA. I could keep going and going on the problems I had with this new center. Constant battles. I wanted to go back to another Fresenius location and GET OUT OF THERE! That is when I found out I was actually BANNED from any Fresenius location.
Actually "banned" for being a "difficult patient". So I guess being my own advocate got me banned. I found out that a couple of DR's did not want to work with me so the whole company banned me. Of course, they did not want to work with me, I had lost any and all respect for them as DR's, and it showed. 1st of all how could DR's ban a person from a company? They are only contractors and DO NOT represent the company. I could have gotten other DR's to see me. I never received anything verbally or in writing from Fresenius about having any issues, I moved and had to go to another company, and as far as I knew I left on good terms. So, I filed one of my 5 grievances, which as I said went nowhere. They could have at least spoken to me and we could have come up with a solution, but no.
The problem I was having just disappeared after several years of going through these horrific ordeals and I started being able to finish my treatments. After several years of research I finally just recently found out I had PLMS (Periodic limb movements of sleep) which is COMMON in dialysis patients DURING treatment not just sleep. HUH.. go figure. God forbid any DR would try to figure this out. Even the new Dr. at the new center did not bother to do any research to help me. I, of course, found this out on my own. I seriously think everyone thought I was faking something to get out of treatment's early so I could go play golf or go shopping. I was always considered "non-compliant" and that fact was documented in all of my medical records. They also put everywhere in my records I had an "anxiety disorder". I've never had an anxiety disorder in my life, but it shows up ALL OVER my records. They did not know what PLMS was and used the term "anxiety" to describe my problem.
Them BAM! I started having "episodes" where I, AGAIN, could not finish my treatments at the new center after a couple of months of being there. As I stated they refused to give me makeup treatments. BLA, BLA, BLA. I would not be able to hold my head up, I could not speak, I could not move my body, and was almost completely unresponsive. It takes me about 45 minutes to be able to even stand up after I had to make them stop the treatments and I barely am able to walk out of the facility without having to hang on to walls as I walk. I looked through my records and they NEVER documented any of this. BTW, through all of this, I lost count of the hospital emergency room visits. AGAIN, not one single person at this center did ANY research on what the problem could be. I had to check myself in at the Cleveland Clinic to see if I could get any help there. I was there for 3 weeks. They changed the prescription and it seemed to help. Coincidentally, I got a serious infection in my shoulder at the hospital from a torn rotator cuff. Had to have IV antibiotics. There was no way I could not handle it mentally or emotionally to be any longer at the hospital, I had to leave. The dialysis center REFUSED to accept home delivery of the antibiotics I needed. They want the antibiotics to be delivered directly to them but the Clinic was using a home delivery service. What the hell is the difference?? So, the clinic wanted me to stay for at least another FOUR WEEKS in the hospital to receive the IV antibiotics. OK, yeah, no way. So I was considered leaving AMA. Got oral medication instead, which the Clinic was totally against but I did it anyway. The dialysis center refused to get my medical records from the clinic because I left AMA, which was THEIR FAULT. They refused to get the new prescription which seemed to help my episodes. I ended up finding the number of the dialysis center within the Clinic and had them fax this new prescription to the center.. AGAIN ME, not anyone else helping me. I am still getting the episodes intermittently and getting off my treatments early. Again, no help from my Dr or the NP's. I made an appointment with a Neurologist at the Clinic and BAM he knew exactly what I had. DDS (Dialysis disequilibrium syndrome). AGAIN c
I couldn't type any more verbiage in the last reply so I will continue here. I gave the center the printout from the NIH site on DDS. It describes in the paper the solution for the problem, changing the prescription... Do you think I have heard back from my DR. or the NP's? um, no. SO, I have been trying to get an appt. to see a Neph. at the clinic since Friday! Do I have an appt. setup yet, um, no. Now the clinic cannot get their sh@# together enough to even get me an appt. I have explained to them how urgent this matter is I NEED TO FINISH MY TREATMENTS! So, I am trying to depend on another outside Neph. to help me. I am ready to shoot my self! Plus I had a huge water leak in my house and mold everywhere and am trying to deal with that, the insurance company and contractors, bla, bla, bla. and so it goes.
Update: I have yet to get an appt. for another Neph. Here's the RULE for all dialysis patients: any dialysis patient cannot see another Neph. unless you get a referral from your current Neph. I have contacted 3 Neph offices just to get a 2nd opinion to help me with the DDS I have that does not allow me to finish my treatments 80% of the time. The assumption is that when a dialysis patient wants to see another Neph. they want the new Neph. to take over the patient's care therefore a referral is necessary. After I found out this rule I contacted each office to explain that this was NOT what I wanted to do. I just need a 2nd opinion. Made no difference. My Neph. has not visited me in the center for over a month now. They are supposed to come once a month to see patients in the center, but he is so undependable you never know when he will be there. Another rule I found out. NO dialysis patient can see your current Neph in his office. You can only see the NP's and Dr's at the center. NO OFFICE VISITS ARE ALLOWED! Of course, it's not the same as seeing these people at the office. They are in a hurry to get to all the patients when they visit the center you do not get their undivided attention. ALL I WANT TO DO IS FINISH MY TREATMENTS! I am getting no help whatsoever! I have found out I have NO rights as a dialysis patient. Not with centers nor with the body you are supposed to be able to file grievances with! I have never felt so defeated in my life. My life span is getting shorter due to not finishing my treatments, no body cares.
I haven’t read this entire strand so may be suggesting something you’ve already considered. That being said, have you considered going through training to self-administer HD dialysis in your home? You can do this either with a care partner or solo. You’d get full dialysis that way.
If that isn’t an option, does your center teach patients how to stick themselves to more or less self-administer dialysis in-center? Maybe lessening the time burden for center staff will lead to more time on the machine for you.
And finally, are they overbooking; so they need your chair for another patient? You may not be able to change the time for your treatments but if you are able there may be a time when the center is less busy. Along those same lines, perhaps switch to another center that is less busy??? I’m not sure, but it sounds like an overbooking scheduling issue of some sort.
Jayhawker, thanks so much for replying. I know, it's practically a book, but I have had so many bad experiences I could give many more examples. I can't finish my treatments due to a medical problem that will not allow me to finish treatments called DDS (dialysis disequilibrium syndrome), a neurologist just diagnosed me a couple of weeks ago after going through this for about 9 months now. My DR. finally showed up yesterday after being MIA for 2 months. We agreed to try home hemo. You do more days and it is much more gentle. So, we hope this will solve the problem. Thank goodness I still use a port and not needles. I refuse to get a 3rd fistula. I know someone who has had 8 fistulas so far. No way I would do that to myself. In the beginning, the center refused to give me extra treatments, having nothing to do with how many chairs, a huge difference between refusing treatments and not having enough chairs. They wouldn't even let me use the always-empty isolation room. I've tried changing centers which is documented in my original post.
I’m glad to hear that you will switch to home hemo. That really should help. Frankly, it’s preferable to in-center for everyone in my view specifically because it can be done more frequently thus coming closer to what our kidneys do and it is, as you say, gentler. So much easier on our hearts.
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