I Hate Dialysis Message Board
Introduction => The IHD Family - Our Members => Topic started by: kimcanada on July 29, 2009, 10:50:32 AM
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Hi IHD, I am pissed and can't take it anymore, in the last two days, my training has been postponed two times from August 4th to August 10th to September 8th...
Then an hour ago my nurse called me and bumped me from my day shirt to afternoons, there was no asking , there was no inquiring if that was OK with me , nope we need your chair , so sorry...
Well I did a video and I am PISSED, I need your help you pass the link of this video on, the one thing the health care hates here is bad press, PLEASE HELP ME FORWARD MY VIDEO ON.
THANKS
Kim
http://www.kimhoben.com
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That sucks, Kim. Can you upload the video to YouTube?
Aleta
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Kim:
After all the arraignments you've made and in one fell swoop they are brushed
aside!! Bull$hit!! Go to the center at your usual time and demand to see the
person in charge! Let them know in person just how you feel. No! this is not
accecptable treatment. arrgghh I feel for you :stressed;
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Sorry to read this.
I can see changing your training maybe once things happen. But from a week to a month is crazy.
As for your day to day stuff. WTF. You are a person with a life or trying to have a normal life as you can. This doesnt help at all. I would go just to see who has your seat.
I hope you find a good resolution.
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:grouphug;
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I feel your frustration, Kim! You make your case excellently in the video.
Nice work, and good luck!
:grouphug;
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Kick ass and take names Kim! Wish I could come up and help you. (Prolly get deported)!
:cuddle;
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Kimmie -- how do I forward your video on?
day shift -- was that mornings
and now you have afternoons and don't you have to drive for an hour or longer?
and aren't you starting dialysis where you stick yourself at home? and they are screwing you over on the training?
are you with Davita?
and so sorry about this, Kimmie
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Kim, can you insist that the social worker get involved here? I would ask her to watch the video, in which you are calm but obviously holding back and then I would let him/her experience the full extent of your feeling like the rug is constantly being pulled away from beneath you. Don't hold back on letting her/him know all the things you've both done to accommodate kidney disease, all the control you've lost and list every single area. Tell him/her that you feel you're losing your mind by being on hold this way. Don't blame anyone, like nurses, for not caring about anything but their schedules, just stick to how everything that's happened is affecting you as a human being. Can't plan, can't sleep, feel like a ship in a storm, feel like crying, feel like throwing things, interfering with relationships, ...bring everything back to YOU and ask if she/he can't possibly advocate on your behalf. Really focus on the feeling of utter loss of control and your need as a person to at least be able to count on some kind of firm plan. Really highlight the issue with your visitors not coming to visit due to all the schedule upheavals and how you feel as though you've lost both summer AND fall because of burps in the system.
Thinking of you. :cuddle;
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Kim,
I am so sorry you have to go through this. I cried through your video - your frustration and disappointment is absolutely understandable, and heartbreaking. Isn't it tough enough to rely on dialysis as life support, but, as you said, to have no say or control over how your treatments are doled out?? I have shared your video on my facebook and twitter.
If anyone else who has facebook wants to distribute her video you can go to my facebook and click on SHARE where I have posted the link - and it will post it to your page too.
You can also go to YouTube http://www.youtube.com/watch?v=VOIEdddhN68 and share the video by signing in. Scroll down to SHARE. You can email it to friends, show it on myspace, facebook, etc. You can also post a comment there for Kim.
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OH boy did I need this nice words of wisdom, today sucked like no other sucked...
Andrew let me cry and scream for about an hour then we got down to business... I am not going to let this go away, I am making a list of failings in the system now and getting ready to get in contact with my government offical. I will never believe that they bumped me, My daughter is getting back from Europe next Tuesday and I was heading to airport to get her, now I can't ,,, It's not even the really big things its everything.
Thanks OKarol for posting the link
Kim
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Go get 'em Kim! I am so mad when I think of how they treated you. You have been more than patient and you deserve some answers. What right did they have to give your time slot away with no notice?
I think there have been some very good answers posted here in regard to youtube, Facebook, etc., as well as contacting the social worker.
I am sending you a big hug. :cuddle;
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I'm so sorry! It is all so ridiculous. As a dialysis patient your life already feels so out of your control and then for them to make decisions without your input just makes it worse!
I really hope they catch enough cr** that things change for you!
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This sucks girl, I will share you on facebook. I don't know what to say- you're being treated horribly, I hope this helps get you some attention.
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Oh Kim,
This whole mess just sucks. I agree with Monrein. Get your social worker involved. Try to stay calm and let the social worker be your advocate. They can move mountains when they want too! Also I agree with speaking to your local government official.
Try to stay strong and stand up for your rights. Thinking of you. :cuddle;
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Kim, I know you will remain strong throughout this ordeal. You have an entire online support system behind you! I have posted your link on Twitter, my Facebook page and sent the link to everyone that joined my Kidney Walk Cause on Facebook. :cuddle; :cuddle; :cuddle;
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Kim, seeing your video really got to me, I will forward it to my whole address book and share it on Facebook. I wish there was more I could do to help :cuddle;
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Kim, your video brought a lump to my throat. God Bless you and I hope your video goes worldwide and kicks some :sir ken;
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Kim, seeing your video really got to me, I will forward it to my whole address book and share it on Facebook. I wish there was more I could do to help :cuddle;
Ooo...I didn't even think of that! Family and friends, watch out!
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Thanks again for all your support everyone...
The youtube link is http://www.youtube.com/watch?v=VOIEdddhN68
Please share this video with your contacts.
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This is absolutely rotten! I can't believe they just shafted your regular spot without asking you about it or anything. I mean our guys will bend over backwards to arrange things as best they can to fit everyone in. The thing that also annoys me is that they have treated YOU like nothing... that this new patient is somehow more important than you. Good grief... at our unit if a new patient came along and there wasn't a spot on their preferred day.. well tough.. that's the way it is. Gee, that is just horrible for you and I am so sorry you have been shafted like this. I agree get the word out there and take it to the highest levels you can! It is very unfair on you and you're being treated so badly :(
:grouphug; :grouphug; :grouphug; :grouphug;
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Thanks again for all your support everyone...
The youtube link is http://www.youtube.com/watch?v=VOIEdddhN68
Please share this video with your contacts.
Will do, Kimmie! We are with you all the way! :grouphug;
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I was very touched by your video. The way you are being treated is scandalous to say the least. :grouphug;
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Thanks again... the link................ http://www.youtube.com/watch?v=VOIEdddhN68
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Kim it really upset me to see your video. Take monrein's advice and go to the social worker and explain how it has affected your life. Kick and scream if you need too!!! My advice is to not just go to government officials - the public doesn't hear about it then!! Call the media - they love stories like this. Send them a copy of your video. Call and call until you get somebody to listen to you. Government officials have a way of trying to cover things up - the media doesn't!! :cuddle; :cuddle;
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I think Del has an excellent suggestion. Send your video directly to the newspapers and television stations!
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Oh Kim, you poor thing...
Mum's been there, too... :banghead;
She dialysed at a private hospital because there was no slot available at our local hospital where she sees the Nephrology team... So she dialysed Tuesday and Friday, (She was only dialysing twice a week). The taxi, paid for by the Health Service Executive, uses to drive past the gates of our local hospital, and on to the private hospital...
She would LOVE to have gone back to her Senior Citizen's Daycare Centre, but that was on Fridays, so for the entire year, I requested a change of schedule to allow her to attend.. No joy!... But when they had someone who wanted Tuesdays, they put DREADFUL pressure on her to change to Mondays... We agreed to change day to suit them, IF they agreed to change day to suit Mum... They refused, and so did we!!!... They mentioned moving her day anyway... What I didn't threaten to say and do wasn't worth saying and doing!!!... Going to the media, Mum refusing to go to dialysis, Me contacting the Dialysis Co-Ordinator for the whole country, Me picketing the hospital day and night, and going to court if need be.... They backed down... RAPIDLY!!!... :bandance;... Honestly, I can't understand why I'm known as 'That B***h in the Wheelchair!'... :sarcasm;
Then they wanted to change her time... She had 7am-11am... They wanted her to go to 3pm-7pm... Mum didn't like that idea ONE bit!!!... What bugs me most was them saying "Well, at your mum's age, we know that this will be a better time for her"... Of course nobody asked MUM what was best for her... My reply to that suggestion is NOT repeatable in polite company... Let's just say that the reply was two words, each of four letters, and the phonetic wording would be 'Foxtrot Oscar'!!!... :sir ken;
Thankfully, Mum's on CAPD now, but it was a hellish year!...
You not turning up for dialysis tomorrow should set the cat among the pidgeons... I'd LOVE to be a fly on THAT wall... Just make sure you get in touch with your Neph. and inform him or her of WHY you won't be attending... Oh and email him/her that video you made, and email it to the CEO of the company who provide your dialysis... Oh and if you can, get in touch with the Health Correspondant at your local radio, and TV stations... Let's blow all of this dreadful treatment of vulnerable people right out of the water!...
May God bless you and keep you safe, Kim...
Keep fighting the good fight!... :grouphug; :grouphug; :grouphug; .. Throw a tantrum if need be.... As a Hospital Chaplin said to me one day when Mum was being neglected "It's time to become a B with an itch"... He was right, I did, and it worked!!!!!....
Darth...
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:grouphug;
Kim - Your video is very powerful. Spread it far and wide. you have received a lot of good suggestions like using a social worker (although the social worker I used to have was and still is totally useless) to intervene and going public with your video and story. I'd complain heavily to the doctor too.
Your situation really sucks and I really hope you can get it resolved very soon.
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Slywalker thats for the kind words...
http://www.youtube.com/watch?v=VOIEdddhN68
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I posted my feelings on Facebook, but I had another thing to add...You should just show up on your previous regularly scheduled day and time and see them run around with their thumbs up their a** because they have no idea what to do about such a ballsy patient! And I'd stand there until they got a machine ready for you!! Do that a few times and I'm sure they'd reschedule the new patient!
>:D :cuddle; :cuddle; :cuddle;
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Look at this....
Jean HughesOh My Kim. I hear ya. I know you are frustrated. Being a Dialysis pt has to be the hardest thing. You are captive to your day in the clinic. I am glad to hear you are going to have training. Will you be doing home Hemo or home Par. Dialysis??
I am a Nurse. I however am not in Canada. And by the sounds of things you have it pretty good if you have a nurse, care giver, social worker, doctor all looking after your care. That is great. Where I live we have a Lot of renal patients. They are lucky here to have a government program that covers the care they need. Otherwise they would die. Skipping Dialysis is one way to take back your power over the situation. However this only hurts you. And sends a message to the "Halifax" or "nurses" or DOctors that you are not serious about your own care. That you would skip a life saving treatment.
Yes You have to think about how you want your care to be run. You have to communicate your needs to the establishment. hope you can work it out!
8 hours ago
Kim Deveau HobenSometimes Jean, staying "alive" just doesn't cut it... In Canada there is something called quality of life, everyone expects it, and I with no kidneys also expect it. So yes I am lucky to have all these health officials getting paid really really well to look after me, but my point is that I am not happy with the care they give.
3 minutes ago · Delete
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I wish I lived closer and could come by and visit you. I can only understand a little bit of what your frustration is but I hope that you stay on with your regular dialysis visit. Your the number one person and even though you hate it , dialysis is a requirement. I hope that you get them all together and make them explain themselves. Make them understand what its like. Please stay in touch and let us know how you are doing. :grouphug;
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Thanks so much for everyone that watched my video and sent comments and well wishes, I have been switched back to days until I go to Halifax for training.
I would also like to send a special thanks to Paddbear for the very very sweet card I recieved in the mail all the way from OHIO !! It was such a sweet thing to do that it brought a tear to my eye. I love IHD and Epoman for having the foresight to know that we people needed people just like us in our corner!
Love to All!!
Kim
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Kim, that's great news!...
I think you have to dig in the heels sometimes... I'm WELL known for it at the hospital where Mum's concerned... I've been told by certain staff that the 'powers that be' have a far greater respect for me now that they know that I won't allow Mum to be pushed around!...
I hope your training goes really well, and you're soon up an running with home dialysis...
May God bless and protect you...
Love...
Darth...
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Kim, you are very welcome! Your video made me cry just watching it, let alone going through it. We love our fellow IHD family and do what we can to help (even if it's just a card). :grouphug; :grouphug; :grouphug;