They said....Home dialysis

[karen547]

Well we have experience with people like you who think they know EVERYTHING, and guess what?? Nobody knows everything and I'm tired of reading you're very snotty responses, get off your high horse and pull the stick out of your butt! TRY dialysis, I DARE YOU! You'll be singing a different tune then!

[George Jung]

Oh that's nice, "narrow minded and predictable responses".  For being somebody that "I would WANT" to be taking care of me, you really know how to win my heart.

With knowledge comes power.

With arrogance comes ignorance.

Nobody here is asking for a spoon feeding, I happen to be one of the most independent people I know (regardless of health), we just want what is right and just.  To expect us to rearrange our lives to accommodate your schedule is preposterous.

This offering of a different perspective you speak of so innocently...   

All I am offering is a different perspective.

  ......is snide.

[KR Cincy]

JerseyGirl, I have no doubt you are good at what you do, unfortunately, like many who have been in the same profession for a long time, you are locked into the whole "this is the way it is" mentality. And 21 years ago, when you started, in center-3 days a week was the way it was. No more. And with changes in technology, modality, lifestyles, and outcomes, comes changes in the delivery system. Accomodations must be made on both sides...for instance, my training nurse came to our home when we were ready to begin cannulating to teach us how, as opposed to making us haul our machine to the center for the 5 days we'd need his guidance. I'm pretty sure that's not in his job description, but he accomodated us in order to allow us to maintain normal work and life schedules. We accomodated him by starting our treatments very early in the morning.

Please keep in mind JerseyGirl that, whenever you want, you can walk away from dialysis. We can't (well, not without dire consequences.) That reality makes for a huge difference in our approaches to our care.

[Romona]

Sorry if you can't see somebody elses point of view.

It seems to me from reading this thread that you, JerseyGirl, are not able to see things from another's point of view. You work in the medical profession where peoples lives depend on receiving care, I mean we are not talking about dental work here. There is no time off for the patients, and if we are in this together as YOU say we are. then there is NO time off for YOU. You have the choice (unlike me) so if you don't like it ....well you know what you can do.

Now George, dental care is important too. I work in the dental field. With the exceptions of a few rare occasions, most people don't die from it. That is another thread. 



What I want to say is please don't stereotype people with ESRD. It can strike anyone at any time just like other diseases. It shows no mercy. Rich, poor, educated you get my drift. And for every 1 health care professional that does a good job and truly cares there may be 10 that don't. We all have stories we can tell.

I am glad you take pride in what you do. You wouldn't have spent 21 years doing it if you didn't.

What started this whole thing was the time training would take and it would be a hardship for someone to take that time from work. I guess some of these people could quit their jobs and go on Medicare which you seem to be against. In this world of 24 service such as Wal-Mart ect... why couldn't there be an option for off hours training. If it suited the patient and there were health care professionals that make a choice to work it, what is wrong with it? Why not accommodate patients a little so they can have a normal life.


If suddenly you had to do dialysis how would you do it? When would you do it? Would you continue to work?

[paris]

Kitkatz, is there any progress on the training situation? Something has to work out. Keep pushing--think of Epoman! Get out your big stick!!

JerseyGirl  Re: scheduling     My husband worked for the airlines for 38 years. Ice storm hit-he stayed overnight. Hurricane--he went in hours before schedule to be there on time. He rarely had Christmas, Thanksgiving, Easter off and missed lots of the kids activities.  BUT, he knew going in to that field that the hours and days were crazy. It was his job.      My DIL is a labor and delivery nurse. She works odd hours, weekends and holidays. It is her job. She could work in a doctor's office and work 9 to 5 with weekends off.  If that is what you choose, great. But if there is a need for later hours, I am sure there are wonderful nurses that would be willing to have a job.  As was said earlier, things have changed in the past 20 years. Lots of centers have nocturnal shifts. It is not asking too much for training to be done when working people can be there.    None of us asked to be in this position.  I did nothing to cause my kidneys to fail. I don't have diabetes--no family history. I have lived life well, worked, raised a family and played by the rules.  I am sure all of us hope you never have such a life altering event that leads to loss of health, job and the life you knew.  Please don't be insulting to us; we have all been insulted enough by what life gave us.  Working with people with a certain disease is NOT having the disease. When you go home, you can go about the rest of your day and not think about what you are drinking, eating, did you take all your meds, can you have enough energy just to get a shower before falling into bed, will this be the night you sleep or are up for hours vomiting??   The 4 hours, 3 x week is a very little part of our lives.  You don't see the day to day reality.  Again, please just show a little compassion to all of us here that are trying to make the most of what life has dealt.  We are grateful for good medical care. I adore my nurses and neph.  I am sure your client, customers, patients feel the same about you.

[goofynina]

Excellent said my dear Paris  

[willieandwinnie]

  Well said Paris.

[Jamesw]

I'm a Dialysis patient and at my job I've had to work weekends including Sundays, Shifts starting at seven am and others ending at eleven pm, while also having to go on dialysis, I don't think it's too much to ask for someone else to do the same when it's needed. So I guess you can say I dismiss out of hand the notion that having a life means someone should only have to work bankers hours.

[Wattle]

Fact is for 1 of you there are 10 that actually don't give a hoot about their care.

Kit does give a hoot and she is trying to make a positive change in her life regarding her treatment. She should be encouraged to become more independent and less reliant on the clinic system. This will save your precious Medicare money in the long term!

[aharris2]

Of all people, the clinic dietician is going to look into home dialysis for me. There is light at the end of this long tunnel, and it may not be an oncoming train.  Fresenius is going to open a new center in Loma linda and will have home dialysis unit there.  I may be able to train there when it is ready to go. They will probably work with my weird schedule.  She is also going to see what the hell is going on!  Hurray!

Back to you Kitkatz. I hope things are going will with the new center and the possibility of training. If not, is there a light at the end of the tunnel anyway? I don't know if you typically work through the summer or not, but as a teacher, do you have the option of taking the 8 weeks of summer off? If nothing else has worked, maybe you could train then. Keep pushing Kitkatz, there will be a way.

Alene

[Sluff]

Lets stay on topic here, and remember everyone has a voice and an opinion.

Sometimes it gets a little heated, so lets take a breather and offer Kitkatz advice about switching to home dialysis.

Sluff/ Admin

[del]

Any more news on the training Kitkatz??  Hubby has bee on home hemo nocturnal over a year now and it is fantastic.  Would never want to go back to in center.  Suggest to them to change their hrs for the day when you need to train.  Instead of going to work early in the morning they could go in later and finish later in the day. Only work the same number of hrs. They waon't have to make this adjustment for all patients just the ones who cannot rearrange their schedule.  I am a teacher too kitkatz and I know that it is impossible for us to change our schedule.

[Gram2Twinz]

I agree that the center that is offering the training should be flexible when beginning the training program for their patients. When they set up their Hemo @ Home program, they must take into consideration that the in center HD patients have arranged their lives around going to the center for treatment. For many, that is the worst part. The training program should be setup to move them from one side of the center (the in patient side) to another side (the Hemo @ Home side) during the same time. However, because 5-6 days on treatment will change- the patient will have to be flexible enough to change the 2-3 days off to 5-6 schedule for only a very short period of time. It should be the focus of the center to get the patient on Hemo @ Home as soon as possible- better dialysis, better health, better quality of life. The center and the staff should be aware of the "training schedule" and be flexible enough to even "go home" with the patient for a few days to make sure everything is safe and the patient is comfortable with their setup. This is helpful in the long run because it may mean fewer problems "down the road" that may require more time with the trainer. If that means the trainer has to work "odd hours"- so be it. The patient will be then out of the center, enjoying the freedom of life again. Those who choose to become trained to work with Home Hemo patients, should enter their training knowing fully the commitment they need to make the program successful. We patients know that, we are committed to living life- we chose that when we signed up for dialysis.
The Dialysis centers' focus should be on patient care whether it's in center or at home.

[kitkatz]

I have my people working on it.  Lordy, I started a conversation here didn't I? Calls are being made and someone may be able to get me NX stage notebook.  We shall see.

[paris]

Can you tell we love you, Kitkatz??   We want the best for you and apparently, we are williing to fight for you

[Sluff]

Did the number I gave you help?

[kitkatz]

I am waiting to see what the center can do before I call Alvin and the troupes in NX stage.

[kruep]

Kitkatz,
Please let me know if I can make any phone calls for you.  All I need to know is where you live.  I still have folks that I consider friends on the "inside" (inside DaVita At Home and NxStage) a few of them owe me favors.

If that doesn't work I think that there are enough of us here to raise enough of a stink to get you what ever you want.

If I could train you myself I would!!!

kruep
(Kristi)

[Redbomb]

Somehow, I missed the start of this thread, but 6 weeks boggles my little mind.

I just started (again) Home training and they are talking about having me home for Christmas!  I'm not sure if I'll be ready by then!  I gotta get up the nerve to "stick" myself!

Renwick

[goofynina]

I know the feeling about being afraid to stick yourself (i had a hard time giving myself epo shots)   but i hope you get over that fear soon and you are home for Christmas doing your home hemo   Good luck to you Redbomb and keep us updated on your progress,  i'll be sending good positive thoughts your way my friend 

[kitkatz]

There may be another center in Rancho Cucamonga that has home hemo and may be able to take me with my crazy scheduling difficulties.   They are currently looking into it.  Why is every center's head person Linda or Donna?

[Psim]

Great news, Kit. All my crossables are crossed that this works out.

[vandie]

Great news, Kit.   

[paris]

I hope this works out Kitkatz. You have been working so hard toward the goal.  Crossing fingers, saying prayers---whatever it takes

[willieandwinnie]

kitkatz, I hope they can do what you want them to. Let us know.