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pagandialysis
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« on: December 28, 2012, 12:15:14 PM »

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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Dining on Dialysis - www.diningondialysis.com
-------------------------------------------------------------
Kidney Transplant (December 31, 2014),
Dialysis-Hemo (Started May 17, 2011. Ended December 29, 2014),
AV Fistula #2 (This one is a Basilic Transposition),
CKD (IgA Nephropathy) Stage 5,
Hypertension (Under Control)
cassandra
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« Reply #1 on: December 28, 2012, 01:58:30 PM »

I would definitely switch, if another clinic with the times you want is available.

Good luck Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
lmunchkin
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"There Is No Place Like Home!"

« Reply #2 on: December 28, 2012, 01:59:01 PM »

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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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
amanda100wilson
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« Reply #3 on: December 28, 2012, 04:05:00 PM »

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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ESRD 22 years
  -PD for 18 months
  -Transplant 10 years
  -PD for 8 years
  -NxStage since October 2011
Healthy people may look upon me as weak because of my illness, but my illness has given me strength that they can't begin to imagine.

Always look on the bright side of life...
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« Reply #4 on: December 28, 2012, 04:17:32 PM »

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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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
jeannea
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« Reply #5 on: December 28, 2012, 04:33:24 PM »

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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sullidog
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« Reply #6 on: December 28, 2012, 05:37:01 PM »

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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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
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« Reply #7 on: December 28, 2012, 11:35:21 PM »

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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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
pagandialysis
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« Reply #8 on: December 31, 2012, 04:04:32 AM »

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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Dining on Dialysis - www.diningondialysis.com
-------------------------------------------------------------
Kidney Transplant (December 31, 2014),
Dialysis-Hemo (Started May 17, 2011. Ended December 29, 2014),
AV Fistula #2 (This one is a Basilic Transposition),
CKD (IgA Nephropathy) Stage 5,
Hypertension (Under Control)
CebuShan
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« Reply #9 on: December 31, 2012, 06:58:21 AM »

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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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
kit78
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« Reply #10 on: January 24, 2013, 03:30:27 PM »

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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Inherited PKD from my Mother who died at age 52
2001 Transplant - Blessed...only on list for 4 days
2012 Lost Transplant and had Pneumonia
2012 June - started Dialysis
2012 December -  Back on Transplant list
pagandialysis
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« Reply #11 on: January 25, 2013, 12:11:08 AM »

They put me back on 1st shift by the way.
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Dining on Dialysis - www.diningondialysis.com
-------------------------------------------------------------
Kidney Transplant (December 31, 2014),
Dialysis-Hemo (Started May 17, 2011. Ended December 29, 2014),
AV Fistula #2 (This one is a Basilic Transposition),
CKD (IgA Nephropathy) Stage 5,
Hypertension (Under Control)
jeannea
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« Reply #12 on: January 25, 2013, 12:54:06 AM »

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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cattlekid
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« Reply #13 on: January 25, 2013, 05:01:06 AM »

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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geoffcamp
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« Reply #14 on: January 25, 2013, 08:58:20 AM »

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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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
lmunchkin
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« Reply #15 on: January 25, 2013, 04:46:09 PM »

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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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
geoffcamp
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« Reply #16 on: January 26, 2013, 03:22:19 PM »

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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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
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« Reply #17 on: January 26, 2013, 05:41:26 PM »

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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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
geoffcamp
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« Reply #18 on: January 27, 2013, 07:45:41 AM »

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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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
Riki
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« Reply #19 on: January 27, 2013, 03:35:28 PM »

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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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
lmunchkin
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« Reply #20 on: January 28, 2013, 12:09:56 PM »

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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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
geoffcamp
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« Reply #21 on: January 28, 2013, 03:35:33 PM »

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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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
Riki
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« Reply #22 on: January 28, 2013, 07:28:55 PM »

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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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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« Reply #23 on: January 29, 2013, 10:10:43 AM »

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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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
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« Reply #24 on: January 29, 2013, 12:21:36 PM »

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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Geoffrey Campbell
Diagnosed with ESRD at 26
Transplanted in 1999 rejected 2001
In center hemodialysis since late 2001 3X a week 4 hours late evening 3rd shift
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