I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: pagandialysis on December 28, 2012, 12:15:14 PM
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I missed the other day due to a family emergency I couldn't avoid. Now they want to switch me from 5:30 AM to 10:30 AM. I told them changing the time is not going to make me come if there is, in my mind, an unavoidable reason for me not to come. I am getting really pissed off because I already moved my whole life around this 5:30 AM shift and now they want me to move it all around again! I am very much thinking of saying "If you plan on switching me to 10:30 AM and this is going to happen then I am going to switch to another care provider all together."
What do you think?
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I would definitely switch, if another clinic with the times you want is available.
Good luck Cas
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I totally agree with you. But unforntunately, it is there way so it seems. I hope I never have to take John permanantly back to in-center. It just wasnt accomodating at all.
God Bless,
lmunchkin :kickstart;
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Do it. They should not be allowed to play this control/power game with patients which is what it is, and from reading this Forumis all too common.
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I agree with the others. They are harassing you. They are forgetting that you are the customer who can take your business elsewhere.
Aleta
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Have you tried just saying no? Also, I hope you called and told them why you weren't going to be there.
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Yeah unfortunetly centers seem to have this policy where if you miss your treatment do to any reason they can give up your chair.
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the more I read about intolerant centres in the US, the more I'm glad I live in Canada. If you had a family emergency, and you called and told them you couldn't make it, what the heck is the point of changing your time? When my first boyfriend died three years ago, two nurses volunteered to stay two hours late to accommodate me leaving the province to go to the funeral
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I'm sitting here in treatment this morning and they want to put me on third shift. Which as far as I know starts at 2:30, which means I would get out at 6:30. The woman I have to talk to isn't here yet and I am dreading the conversation. The simple fact is I'm a Wiccan, all of our religious services happen at night. There would be no way I would be able to attend anything at all if I switched to third shift. I'm sure to them its a perfectly fine arrangement but to me its the same as saying "We're sorry but you are cut off from your religious community."
I am going to call Fresenius when I leave here today.
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You definitely need to let them know that it is NOT acceptable! I hope there is another center you can go to if they refuse to accommodate you.
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Switch, doesn't hurt to check out another place first or switch altogether. I asked a nurse if she had gotten the ok to switch me with another patient that does the 6 am HD due to an annoying gum popper broad and she said she would ask the head lady who I asked personally a few weeks before. The next time I came in I saw her again and said Hey, never mind if it's that much of a bother I can switch places and the next time I walked through that door I was directed to the chair I asked for.
Sorry to say but its all about money.... Docs, hosp., clinic's, friend and family! It's all about the MONEY!
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They put me back on 1st shift by the way.
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Pagandialysis, I'm glad it all worked out for you. Sometimes people are just jerks.
Kit78, I don't understand. I know a lot of us are cynics and a lot of clinics are uncaring. But how would there be any money difference between a person in the chair at 6am and a person in the chair at 6pm? They get paid per treatment.
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Here's my cynical viewpoint, because I've seen it happen, and I'm sad to say that I have been guilty of it. If you are one of those who are on private insurance, money talks. The clinic might be getting $1000 per treatment (like mine was) instead of the Medicare rate, which is a pittance in comparison. It's amazing how fast someone with private insurance can get placed in a clinic, and get the shift they want. And it is a documented truth that Facility Administrators get raked over the coals by upper management when they lose a private insurance patient. I left my original clinic to do home hemo (they didn't offer it) and the FA tried every trick in the book to keep me around.
Pagandialysis, I'm glad it all worked out for you. Sometimes people are just jerks.
Kit78, I don't understand. I know a lot of us are cynics and a lot of clinics are uncaring. But how would there be any money difference between a person in the chair at 6am and a person in the chair at 6pm? They get paid per treatment.
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In agreement with others posts. Have you looked into a third shift option?? I go in around 5pm at night run my 4 hours and go home. Usually feel human by morning sleeping off dialysis affects. I have my days open. Only thing I don't like is I am on Friday nights. But day shift tore me up. I was useless 3 days a week. When I first stared it was to continue working. Now it's to continue living and I'm 1000% more compliant. Just a thought. Third shift units are very hard to find but there may be an option in your area.
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Geoff, evenings really works out for us too! But just 3 days a week was not optimal dialysis for John. So that is one of the reasons we left in-center. But the other reasons were, it was a job. They just cared for you, because they are required to, but to do it lovingly, they do not have that kind of a connection. The whole in-center experience was just not for us. We love doing this NxStage at home. At first it was overwhelming, but as time goes, it does get more routine & work it aroung your schedule, not theirs. Now, It is part of our routine & it works for us. We rarely stress anymore. Yea the Ball could drop anytime, but I think we are pretty well ready for whatever life throws at us. Give the Glory to Our Lord & Savior. I lean on my faith alot, and it really does help.
John is limited somewhat but he busts his ass to help with set up and does remarkably well with his diet. Sorry, I guess my love for him doesnt show, does it? Can't help it!
Glad you got your original schedule Pagan! It should have been for your convenience in the first place. They did John that way too, but his Neph was all over that, and was put back to original shift. I think she is secretly in love with my hubby! ;) ;) ;) :rofl;
She really is a great doctor!!! We are so Blessed to have her.
God Bless,
lmunchkin :kickstart;
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I have to speak up!! I really don't understand why every one seems to be so negative towards dialysis centers and staff. I've been in the same unit for at least 8 years. Staff has changes from time to but the core group has been there pretty much since I started. The center administrator was actually my transplant coordinator before she took this job. The staff at my unit is much like a family to me and the other night shift patients. I did PD and hated it but I'm happy it works for others. For me I could not make it home early enough to do the 10 hours on cycler that they wanted. I only sleep 5-7 hours a night max! Plus there was all the work of ordering supplies storing them and setting up the machine. It was for sure a full time job. I love my center staff and they treat me very very well. I change up schedules all the time when I need without any complaints or drama. Maybe I'm just very very lucky! I would love to get a few extra hours in a week but I absolutely love the fact I can be doing my own things all day and only think about dialysis just before I have to leave to go in center. Yes it is a job but there are wonderful amazing people that do this job. Maybe if it ever comes to in center dialysis you should interview the staff before you choose a unit. I did. I am in great shape, walk run light workouts everyday and I'm a LONG term patient on dialysis. I just want to share there are loving caring people that work in dialysis centers. Big props to my amazing staff. I hope more people find units like mine. But in my opinion categorizing all dialysis staff as people who do it just as a burden job is just not fair. I take a lot of pride in the work I have done in my life and optimistically I believe most people take pride in their job and love what they do. Sorry if this sounds like a rant but I believe if you treat and respect people or your dialysis staff the way you want to be treated it usually comes back to you. A preconceived opinion that it is just a job for these people simply is not fair to all the great dialysis staff out there. Just my 2 cents. G.
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I don't think anyone has said that ALL dialysis staff are that way, but there are some who definitely are. Where I am, we don't choose where we go, we are sent. There is no such thing as switching centres. Changing times has never been a problem for me when I needed it, and they've even helped me to find somewhere to go when I was traveling. Not everybody has the same experience. Some of us are treated like crap by medical professionals (I have in the past) and are seen as a burden or bother by those who are paid to treat us. It is a fact of life, unfortunately. I think that we are lucky that the majority of those who treat us, either in centre or in hospital, love what they do, and really do care about our well being.
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I don't think anyone has said that ALL dialysis staff are that way, but there are some who definitely are. Where I am, we don't choose where we go, we are sent. There is no such thing as switching centres. Changing times has never been a problem for me when I needed it, and they've even helped me to find somewhere to go when I was traveling. Not everybody has the same experience. Some of us are treated like crap by medical professionals (I have in the past) and are seen as a burden or bother by those who are paid to treat us. It is a fact of life, unfortunately. I think that we are lucky that the majority of those who treat us, either in centre or in hospital, love what they do, and really do care about our well being.
Are you in the US? If so you can change centers any time you want. You will or may have to change nephrologists but you can do it. I have personally done it. So I know for sure it is possible. And I was referring to a quote in a post directly above mine saying that for staff in in center units are only there for a job and (paraphrasing) not loving or caring. And I only posted this because I seem to see a lot of complaints about in center dialysis. I know this is a forum for that and understand. Just wanted to stick up some for these people and specifally my staff who are WONDERFUL!! I know the in home dialysis and PD dialysis has very hard core following and resect that or anything that works for you. But I wanted to tell you in center treatment can be a great experience too and it works well for me and I love my little family of staff and other patients on my shift!! I'm not trying to piss anyone off but just felt need to share my experiences an give some praise to my in center staff. G.
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No.. I'm not in the US.. *L* I'm not able to change centres. I think that a lot of the crap dialysis centre stuff that's posted are bad day rants, and that the majority of dialysis centre workers do care about their patients
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Geoff, if I sounded like all staff were bad and none caring, then Im sorry. It works for you, great, but most in-centers, and my John went to, were good and did their jobs, but it was for their convenience not ours. I know of people on this site who do go to good centers. They also have no one but in-centers to help them. Theyre alone, so they have to rely on centers.
In my husbands case, his in-center was awful about the times they got him on or off. They didnt care whether it was inconvenient for him or Me for that matter. I work full-time and they were never on time for anything. When you approached them about it, they would just look at you like, so what?
Yes, I do advocate for people to take their own care in to their hands. I also advocate for Nxstage & PD as we have done them both. Your in-center and it is working for you, great. Im home doing Nxstage cause it works for me & hubby. If I want to bash in-centers, I should be able to, because it has been our experience.
I seriously, do not know why you were offended by my comments, they were not directed at you per sa, just to let you know of what a better dialysis my man is getting. But was not recieving at his centers. Oh and by the way, he tried another center and it was the same case.
No body can care for him like me! Yes there are techs & nurses who took care of him while in-center. I thank them for that, but to see to all his needs, no that is not what they are paid for. One time he went in-center and needed to go to the bathroom. He didnt make it and they left him there to wallow in his mess. Of course, loved ones were not allowed to stay with them while dialysising, but when I picked him up he stunk. He said they wiped him off before he left. I was so damned upset.
You may have an awesome relationship with your center & staff. Good Im happy for you. You are one of the lucky ones. But for your haveing a good relationship with your's, there are equally as many on here that can tell you of their horror stories.
God Bless,
lmunchkin :kickstart;
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I didn't intend to bash you I even said I understand and this is the place to vent or tell your experiences. And you have very valid points about lack of being on time just like most of my doctors!! LOL. I am in that boat being I am alone and PD is not an option since I've had a transplant. If I could I would take a shot at home hemo. It would be nice to get some extra time in when you want. My only intention was to let you and others know, as with everything in life there are bad ones and good ones. At times there have been a few struggles at my center but on the whole we have a great staff and some great people who are on my shift. But please please know I respect your opinion and know this is the place to voice it. I wasn't offended really just wanted to say not every in center clinic is bad. Sorry it does sound like you've really had some bad experiences. I hope you have found the best solution for you! I appreciate and respect everyone's opinion here and learn a lot. I had no bad intentions just offering up a little success story as I really do not have another choice anyway. Good luck to you guys and I wish the best for you both. G.
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PD is not an option since I've had a transplant.
Why is PD not an option? I've had 2 transplants and was still able to go back to PD, and was on PD for nearly 5 years before a really nasty peritonitis infection made it impossible
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Geoffcamp, if you have someone that lives close to you and can check up on you once a while, you probably could take a shot of home hemo. You can do it by yourself once you get the hang of it. It’s not hard at all and you will learn so much more than in-center teaches. If you have someone who is willing to go to training with you for about four to eight weeks, then you can do it at home. As long as the person lives close to you so if you run into any problems you are unable to handle, you can contact him or her. Once you learn the routine, you will barely run into problems because you will know what’s what. I’ve been doing it for almost three years now by myself. However, I do have someone who close just in case something happens which it barely does.
Go For It!!!!!
:yahoo;
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Cool great vp info. My other issue is ALL my accesses have clotted. I've been using a permacath for dialysis for at least 3 years now.
PD is not an option since I've had a transplant.
Why is PD not an option? I've had 2 transplants and was still able to go back to PD, and was on PD for nearly 5 years before a really nasty peritonitis infection made it impossible
Maybe I was given bad information. That is what the people at my center told me.
But for me PD does not work for my lifestyle. I can't be home early every night and when I did it a long time ago my RX was every night 10 hours a night. I couldn't do it. I'm a big guy not overweight but big and they said that is why I needed to be on that long. Hemo works for me (even if I have to setup machine) because its 4 hours 3 times a week and then I would want to do at least an extra 4 hours a week on top of that. I think it would be great for me.
I'm going to look into talking with docs and staff to see if I can give this a try. Thanks so much for encouragement and information. G.
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"Cool great vp info. My other issue is ALL my accesses have clotted. I've been using a permacath for dialysis for at least 3 years now."
Geoffcamp, No worries, you will get button holes which you can use over and over and it's less holding time.
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Geoff, everything is fine. I do not hold on to things very long. The comments (good or bad) are like you say, ideal for this site. We can all come and vent. You have been through alot and I should have been more sensitive to your situation. Being alone is sad, but it is not necessarily a bad thing, right?
I really think NxStage or even Nocturnal/Extended would be great for you. If you are a nightime guy, NxStage would work great. You seem pretty smart and articulate and could really take control over your health. I hope you do look into it. I really believe you will be glad that you did.
Keep us updated on what you find out. There are several on here that do it all themselves. They can guide you through anything. I never tried buttonholes, cause Im use to the ladder method. I think when cannulating yourself, buttonholes are the techinque to use, so I understand.
Come on Geoff, get on board with us. LOL!!!!
God Bless,
lmunchkin :kickstart;
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I can't button hole or ladder. All my accesses have clotted so I have been using a cath (the tubes that stick out of your chest and connect directly to heart via jugular. Anyone do home hemo with a cath?? I actually think it would be easier. No needles almost like PD cath but for blood. Curious if anyone has done NxStage or other options at home with a cath!! I really wish I had a good fistula or graft. I've tried everything except a femoral one. I was not going to have an access down there unless they could guarantee it would not clot off. They could not give me that guarantee so I have stuck with the permacath solution and its worked great for years. Taking care of it is a hassle but its prone to infection so I clean it well and often!! Anything to get a few more hours of dialysis a week would be a great improvement. THX guys!!
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I did. NxStage with a cath for about three weeks when I first started. I would think it would be better to be home with a cath as long as you follow all the procedures. Less chance of staff cutting corners.
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Very cool. Your the first person who has told me it is actually possible with a cath. Great to know!! I am crazy about keeping my access clean!! I buy cases of these special water proof dressings that work GREAT. I can take a shower and and occasional swim since it gets so hit here in Florida! I make sure to immediately after a shower or I get wet washing car or swim anything that would get the site moist change the dressing with a new one and very thoroughly clean the site. I have a kit I take everywhere I go in case I get sweaty and decide I need to change it to be safe. So far so good. The dressings/bandages are very expensive about $100 for 50 but small price to pay to avoid life treating infection!! I order from a medical supply company and that's A LOT cheaper than buying by the box if 5 at retail prices!! G.
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Have you seen a Vascular Surgeon? I would get a good one and insist he do a fistula on you. Do some vein mapping and find the best place for circulation. John went to a great one and let me tell you, his veins were not big at all. Now, he has a beautiful "rope" between his wrist & elbow on his right arm. There were several reasons it went in his right, but primary reason was because of a metal plate in his left arm from a motorcycle accident. Plus, very poor circulation!
I would not want anyone but this VS to operate on J. He did all his surgeries and has kept him alive longer than expected. His whole left leg was saved by this surgeon due to a vein bypass from groin to ankle. Literally saved his left leg. Then when right leg was giving problems, it was thought that he would have to amputate above the knee, but surgeon found enough circulation below the knee. So it was able to heal pretty quickly and no infection visiable.
His last hospital confinement was Feb 2010 and he has not been back since. Once they cleared him of all gangerine and healed up quickly, he started to feel like his ole self. It was such a tring time for him, but by the grace of God, he pulled through it all!
Go see a good VS, Geoff. One who deals with alot of Fistula's. Good luck! I hope you find the best dialysis option for you. I know you are pleased with your center, but "there is no place like home!!!!!"
lmunchkin :kickstart;
P.S. Good Night. Work commeth quickly! Must get some sleep!
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Unfortunately I have seen the best of the best in this area. I have even been examined by makers of grafts and other means for dialysis accesses. I have had 5 grafts 2 fistulas and a hybrid of a cath and a graft called a HERO graft. My arms have been cut up so many times its crazy!! Nothing has worked. We continue looking into why and altunitives but with no luck so the permacath has been my life saver!! Yea since 2002 we have tried everything and have seen the best of the best specialists. Just no luck!! Maybe one day soon we will figure something out!!
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I did read that post Hery P. but I was not familiar with this.
Tego connectors have made connection/disconnection much safer, but still not foolproof and they require changing on a weekly basis using aseptic technique.
I was not sure if we were taking about the same type of access cath. And I didn't understand about changing on a weekly basis. My cath is under the skin and comes out in my upper chest. 2 tubes they use to connect me to the machine. Are we on the same page?? I'm sorry I'm still trying to figure this out forgive me if I'm not following you. I thought it sounded like a different type of cath then the one I use. Maybe I should take a pic and show it to you.
THX. G.
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THX Henry. Yes we in the US (in my opinion) seem to always be just a step behind when it comes to advancements in dialysis and over all treatment for those of us with CKF. I will be looking into this and see if it is possibility for me. The extra few hours a week I would do would be of great benefit to me. G.
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I would LOVE to try Nxstage, if it were available here. My problem would be finding someone to put the needles in, because I'm not able to do it, due to poor eyesight, and my mom refuses to learn how to do it. I would love to be able to do dialysis on my own terms again, like when I was on PD. Then I could go to school. I can't right now because there's no way I'd make all classes, with the way dialysis is scheduled here. That was my plan, before I got the peritonitis that sentenced me to hemo.