Clinic Discontinues Treatment time slot

[AshtonsMuse]

Have any of you ever experienced your treatment center discontinuing your time slot with little to no notice?  My husband was hospitalized recently for 3 weeks due to a severe infection in his graft and after he had been back for a week, the center said they were cutting out his time slot.  He is employed and he can't just change his days/times off without it being approved by his two supervisors and the hr department.  The center also cancelled his treatment several months ago (for mardi gras tuesday) because they said they didn't have any other patients that day.  I find it really hard to believe that its ok for them to do that.  There are signs all over the place about how important it is not to miss your treatments, but they don't seem to have to adhere to the same policy.  They're also trying to get him to switch to pd so he does it at home.  Not really sure that's for us.  He doesn't want a tube in his stomach.  I'm still very concerned about the services at this center and home pd might alleviate that.

Thanks

[smartcookie]

This doesn't sound right... My clinic has adjusted times within the shift to make things work better.  For instance, one patient needed to run for 4 hours and 30 minutes and we had to shift some times by 10-15 minutes to accommodate his time. We have also moved people to TTS second shift for non compliance to open up morning shifts for patients who come to every treatment.  You can try reaching out to your ESRD Network if you are in the States to see if they can do anything.  Or you can even find a different clinic in your area that is more willing to work with you.  PD is great, but not for everyone.  If you have qualms about it and would rather do in center HD, you should be able to do that.  I would complain to the area manager or regional vice president about this. 

[AshtonsMuse]

That will give us some options. I thought about filing a complaint, but then what happens to his treatment.  I'd like to change centers but it doesn't appear anyone else offers a work shift. (I'll need to look into this more) Plus, I'm not sure his doctors go anywhere else, and we want to stay with this dr. if possible.  I spoke to the administrator about it, and she said she would see what they could do, but now the nurses just call every treatment day to try to get him to come in early.  He can't, and I'm getting tired of politely explaining to them over and over.  We aren't even through our first year, and he's been hospitalized 8 times.  I am pretty exhausted from this, and I know he is physically worn out too.

[smartcookie]

How awful!!  I am so sorry you are going through all this!!  Definitely call the ESRD network in your area.  They can give you the names of clinics in your area to call and check on treatment time options.  Dialysis centers are supposed to give priority to patients who work.  It is in their best interest as those patients generally have commercial insurance as their primary.  I would remind them of that he has commercial primary insurance.  That is how dialysis centers make money.  Medicare and Medicaid do not generate revenue like commercial payers.  I have told my patients who are transferring to other facilities this so they can get better chair times (I am not supposed to, but anything to help the patient). 

[AshtonsMuse]

Thank you for the info.  That's good to know about the work preference.  He does have commercial insurance. They all just act surprised he's working.  We're young(-ish), and he doesn't want to stop working.  He even works on his dialysis days up until he leaves to go to the clinic. Is the area manager or regional vice president generally closely tied to the clinics?  There is no respect for privacy in the center, so I worry about how he'll be treated if I complain.  I'm guessing they know I don't know much since we're new and they're banking on me not speaking up.  I just want my husband to survive this first year, and it has not been easy.

[smartcookie]

I assume you are with Fresenius or DaVita.  Both of those should have something similar to an area manager who is over all the clinics in a specific area.  You probably could ask at the clinic for the number.  Sometimes it is posted in the lobby if you look hard enough.  I give all my patients the number for ESRD Network, Area Manager and RVP. 

[cassandra]

I can't give you any advice or anything concerning the weird position 'they' are putting you and your husband in (as I'm in the UK) but what smartcookie is advising sounds like a sound plan of action.

Lots of love, luck and strength, Cas

[AshtonsMuse]

We're with Davita.  And we're with network 13 in Louisiana. I did find that in the lobby.  I'll try to look around the lobby to see if they have the area manager or RVP listed.  Most of the info I can find online is old for the clinic.

Right now, they're pushing hard for my husband to switch to home pd.  He's starting to think its a good idea because the clinic has not been good.  He's been against it up until now, and I have to say I feel like he's only caving to their pressure.  they are relentless.  Calling every dialysis day to switch times wears me out and it makes his blood pressure rise. It just feels so wrong. 

[AshtonsMuse]

Cas,
 
I see in your post you've done both pd and home hemo, do you mind if I ask what your preference is, and could you share any insight to both? We've watched the davita video, and talked to the pd nurse.  He is concerned about infection - peritonitis - since his last hospitalization was so serious.  He's also not crazy about the tube in his stomach.  He's already lost a graft to infection and yet to get a fistula, so we're kind of in limbo.

Thanks,
Andrea

[kickingandscreaming]

I have also done both PD and HD.  I currently do PD and find it much preferable to HD.  I used to be offended by the belly catheter, but now I don't even notice (except to take care of it).  As far as infection goes, it's all about scrupulous technique and keeping your hand both clean and away from the tips of connectors.  By using the cycler at night, I have cut down-- by a lot-- the number of connections I make daily and the odds of contamination.  I don't have a hugely long track record, but I've been doing PD for about a year and half with no infection (knock on wood).  I absolutely HATED in center HD and might go into hospice before doing it again.  I have seen some fistulas that are far more repulsive than a belly catheter.

[cassandra]

Dear Andrea, I never wanted PD either, but the fistula didn't work, so I crash landed into PD.
I was scared about infections too. But PD was so much easier and less restrictive in diet etc that I found it like 'no dialysis'. I did get an infection after about 2 years by being complacent I suppose. The last peritonitis was caused by an infected cerebral drain.

But CAPD where you do 4 or so exchanges per day was cool. I could still work (in a garden centre and a tearoom, so a lot of standing and being social  ) I could do exchanges while the car was parked up when we went on day trips or something.
When I had the Cycler it was even more cool. You only connect once a day (before you go to bed) and disconnect when you get up. I think I did 10 hours as I have no kidneys at all.

The boxes are a lot, but you can use both arms again.

The biggest problem I had then was how my body had changed into a 9 months pregnant lady.

But I felt good. I think that if you both read as much info about the cleaning procedure etc that it could be a good choice.

Lots of love, luck and strength, Cas

[iolaire]

Thank you for the info.  That's good to know about the work preference.  He does have commercial insurance. They all just act surprised he's working.  We're young(-ish), and he doesn't want to stop working.  He even works on his dialysis days up until he leaves to go to the clinic. Is the area manager or regional vice president generally closely tied to the clinics?  There is no respect for privacy in the center, so I worry about how he'll be treated if I complain.  I'm guessing they know I don't know much since we're new and they're banking on me not speaking up.  I just want my husband to survive this first year, and it has not been easy.

If they think you and your insurance might leave they will get scared and try to help.  One way to approach it sort of gently would be to ask the social worker for a list of centers nearby that have the shift you need since that center is not able to meet your needs.  Personally I don't' think you need to worry about treatment, if anything they will be told to be extra nice to make you happy.  (This is assuming you have nearby centers.) 

But you do need to be ready to switch doctors possibly.  You might also complain to the doctors, if they have an ownership stake in the center they will have some pull. 

Keep working if you can and continue what you are doing to get the center to work and meet your family's needs. 

(by you I mean your loved one on dialysis and you...)

[AshtonsMuse]

I have also done both PD and HD.  I currently do PD and find it much preferable to HD.  I used to be offended by the belly catheter, but now I don't even notice (except to take care of it).  As far as infection goes, it's all about scrupulous technique and keeping your hand both clean and away from the tips of connectors.  By using the cycler at night, I have cut down-- by a lot-- the number of connections I make daily and the odds of contamination.  I don't have a hugely long track record, but I've been doing PD for about a year and half with no infection (knock on wood).  I absolutely HATED in center HD and might go into hospice before doing it again.  I have seen some fistulas that are far more repulsive than a belly catheter.

Thank you for sharing your experience with me.  I appreciate it!

[AshtonsMuse]

Dear Andrea, I never wanted PD either, but the fistula didn't work, so I crash landed into PD.
I was scared about infections too. But PD was so much easier and less restrictive in diet etc that I found it like 'no dialysis'. I did get an infection after about 2 years by being complacent I suppose. The last peritonitis was caused by an infected cerebral drain.

But CAPD where you do 4 or so exchanges per day was cool. I could still work (in a garden centre and a tearoom, so a lot of standing and being social  ) I could do exchanges while the car was parked up when we went on day trips or something.
When I had the Cycler it was even more cool. You only connect once a day (before you go to bed) and disconnect when you get up. I think I did 10 hours as I have no kidneys at all.

The boxes are a lot, but you can use both arms again.

The biggest problem I had then was how my body had changed into a 9 months pregnant lady.

But I felt good. I think that if you both read as much info about the cleaning procedure etc that it could be a good choice.

Lots of love, luck and strength, Cas

I'm still trying to understand the difference between the two types of PD.  One is at night, and the other several times daily?  And what do you do with the exchanged bags?  Like no dialysis would be good.  This has been a hard 10 months. The hemo has definitely taken its toll on his body.
Thanks for the info, I'll share it with my husband.

[AshtonsMuse]

Thank you for the info.  That's good to know about the work preference.  He does have commercial insurance. They all just act surprised he's working.  We're young(-ish), and he doesn't want to stop working.  He even works on his dialysis days up until he leaves to go to the clinic. Is the area manager or regional vice president generally closely tied to the clinics?  There is no respect for privacy in the center, so I worry about how he'll be treated if I complain.  I'm guessing they know I don't know much since we're new and they're banking on me not speaking up.  I just want my husband to survive this first year, and it has not been easy.

If they think you and your insurance might leave they will get scared and try to help.  One way to approach it sort of gently would be to ask the social worker for a list of centers nearby that have the shift you need since that center is not able to meet your needs.  Personally I don't' think you need to worry about treatment, if anything they will be told to be extra nice to make you happy.  (This is assuming you have nearby centers.) 

But you do need to be ready to switch doctors possibly.  You might also complain to the doctors, if they have an ownership stake in the center they will have some pull. 

Keep working if you can and continue what you are doing to get the center to work and meet your family's needs. 

(by you I mean your loved one on dialysis and you...)

I like your approach.  I've been speaking with the social worker lately and I could bring it up gently.  We have several other options nearby that take his insurance.  Thanks for the info.

[Simon Dog]

I'm still trying to understand the difference between the two types of PD.  One is at night, and the other several times daily?  And what do you do with the exchanged bags?  Like no dialysis would be good.  This has been a hard 10 months. The hemo has definitely taken its toll on his body.
Thanks for the info, I'll share it with my husband.

You fill the gut with bags of sterile dialysate (premixed in bags), let sit, and then drain the liquid from your gut into a toilet, sink, shower, etc.   The cycler does this for you several times during the night automagically.

I am on home hemo, but would have loved to been able to stay on PD.  As to the belly line - when it is finally removed (transplant or transition to hemo), it leaves a little scar.   Much less invasive than a fistula or graft.

[AshtonsMuse]

I'm still trying to understand the difference between the two types of PD.  One is at night, and the other several times daily?  And what do you do with the exchanged bags?  Like no dialysis would be good.  This has been a hard 10 months. The hemo has definitely taken its toll on his body.
Thanks for the info, I'll share it with my husband.

You fill the gut with bags of sterile dialysate (premixed in bags), let sit, and then drain the liquid from your gut into a toilet, sink, shower, etc.   The cycler does this for you several times during the night automagically.

I am on home hemo, but would have loved to been able to stay on PD.  As to the belly line - when it is finally removed (transplant or transition to hemo), it leaves a little scar.   Much less invasive than a fistula or graft.

Ok, I didn't think of that.  Good to know you've done both and prefer PD.  Not sure why the hubs thinks he'd prefer home hemo.  I'll help with either.  It's completely up to him.  I just want him to make a well-informed decision.

[Charlie B53]

I did 3 1@ years on PD. The first year doing 4 manuals daily, then switched to using the Cycler at night.  Connecting once, watch TV, go to bed and sleep. Disconnect after I got up and drained in the morning.

I could eat and drink ANYTHING, and as much as I felt like, which wasn't a whole lot.  The constant fluid in my belly caused me to reduce pigging out, actually improved my eating so much, cutting back and NOT over eating, that I LOST 100 pounds of excess weight that I had gained over the last 15 years since injuries changed my work.

Alas, a very nasty infection caused me to lose my cath and forced me into Hemo.

[AshtonsMuse]

I did 3 1@ years on PD. The first year doing 4 manuals daily, then switched to using the Cycler at night.  Connecting once, watch TV, go to bed and sleep. Disconnect after I got up and drained in the morning.

I could eat and drink ANYTHING, and as much as I felt like, which wasn't a whole lot.  The constant fluid in my belly caused me to reduce pigging out, actually improved my eating so much, cutting back and NOT over eating, that I LOST 100 pounds of excess weight that I had gained over the last 15 years since injuries changed my work.

Alas, a very nasty infection caused me to lose my cath and forced me into Hemo.

And that's my biggest fear, since we have just come through a very nasty staph infection in his graft, that stopped his heart during surgery, and had him hospitalized for three weeks with sepsis and double pneumonia.  I realize that it's probably different infection sources, but this was by far the worst on him physically and we almost lost him.  At the same time, hemo is draining the life out of him too.  He's lost 45lbs and barely eats as it is.  He does have some residual kidney function, and I don't know if that would help him with the amount of time he has to do pd.  Thanks everyone for sharing your experiences with us. 

[kickingandscreaming]

Residual function helps a LOT on PD.

[AshtonsMuse]

Residual function helps a LOT on PD.

That's great news!

[Michael Murphy]

Hi your husband is being badly treated.  First by law the ADA, your husbands employer needs to make reasonable accommodations for his schedule.  Second, if your husbands treatment is moved because of a holiday that's fine canceling it is a CMS violation.  Every year for Thanksgiving, Christmas, and New Year my clinic is closed but the treatment is not canceled, schedules are changed instead M.W, F. I might be switched to M, W, Sat.  This way every one gets their treatments and the Staff gets there holiday.  CMS is the Center for Medicare and Medicaid Services and would take your complaint about canceled treatments and harassment over starting times.  Good Luck

[Charlie B53]

..............hemo is draining the life out of him too.  He's lost 45lbs and barely eats as it is.  He does have some residual kidney function, and I don't know if that would help him with the amount of time he has to do pd.  Thanks everyone for sharing your experiences with us.

Setting the correct 'dry weight' is critical to doing well on Hemo.  Going too 'Dry' leaces the patient sick,, overly week, cramped, and remains like that until the circulating system reconstitutes until the blood viscosity becomes more fluid and able to circulate much easier.

At least that is my theory.  My clinic had initially set my weight far too low.  I wasn't P'ing.  I still have residual kidney function and I Believe this is what helps keep my labs so well balanced within mid-range.

We argued but the Clinic agreed and raised my weight a total of THREE Kilo's, one or one-half at a time, until I felt so much better, NO cramping after treatments.  I am not knocked out and sleeping 5 to 8 hours immediately after treatments.  I do have some very slilght swelling in my ankle but NOT every day so I Believe my weight is very near perfect.
Blood pressures alone are not the best indicator of how much water weight to take off, although pressure drops ARE a pretty good indication when too much has been taken off.

I your Husband has chronic high pressures such as I do then the clinic cannot use pressure as an indicator unless they take off too much.  Leg swelling and how he 'feels' may be better indicators.

Talk to his Dr about this immediately.

Excessive take-offs can 'stun' the kidneys and heart, causing the kidneys to lose the residual function, causing heart attacks to those person susceptible.  Setting a far better dry weight is critical to him feeling much better.

This isn't going to be resolved over night.  This is going to take some time to figure out.

[Michael Murphy]

In setting my dry weight I have it challanged, try to take 3 to 4 kilos, when I start getting mild cramps in my fingers I have then stop pulling fluid and my New dry weight is set.  Every one is different and the secret is to learn how you react and learn the early warning signs of too much fluid is being removed.

[GA_DAWG]

I had problems with my time being changed without warning or consultation. Unfortunately, they are allowed to make those changes and there really is little that can be done. No, it is not fair, but it is fact. My time was changed without warning and with absolutely no regard to the fact the time was originally scheduled due to my need to take an autistic child to school and pick him up.