I Hate Dialysis Message Board
Introduction => Introduce Yourself => Topic started by: ESRDMD on July 15, 2010, 07:55:11 AM
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I am a nephrologist who just stumbled on this site. I'm glad it exists. I often try to get my patients to tell me how we can improve the way we deliver dialysis care, but I think they sometimes get nervous complaining to their doctor and, therefore, aren't always completely forthcoming. I'm hoping what I learn here will help me go back to the dialysis unit and radically change the way we do things! Thanks to everyone for your candid and honest opinions!
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Hi- there is plenty of reading material here for you. My husband had a terrific neph. The support staff in the center? not so great, in fact they were demeaning and demoralizing. If I could have asked him to do one thing over- it would have been to stand up for my husband, and the way the staff treated his patients at the center.
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I commend you for your willingness to improve patient care and hopefully thus improve outcomes and most certainly quality of life for those of us who must dialyze. There is much information and indeed many rants on this site about care delivery and I feel sure that you will receive quite a bit of input from our members.
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Good to have you join our community.
:beer1;
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Good to have you!...
I'm sure you'll find us a friendly lot, who are only too happy to assist you...
It would be nice if we could occasionally pick your brain, too...
Again, welcome...
Darth...
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Thanks to all. Will check in as often as I can (which will likely not be as often as I like). And of course I will offer my opinions if you're all interested. My perspective: dialysis mortality hasn't significantly improved in the past 25 years, meaning the old paradigms are not getting the job done. I believe we need to radically rethink the way we provide dialysis care. I certainly have my opinions in terms of what makes a difference and what doesn't when it comes to clinical parameters. However, I also strongly believe that the empowered involvement of the patient is a crucial piece of the puzzle. Without you guys being active and knowledgable about your own care, I don't think it works very well. So, I believe, whatever I can learn from you in terms of improving the facility, staff, operations, etc. will go a long way towards improving outcomes.
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Thanks to all. Will check in as often as I can (which will likely not be as often as I like). And of course I will offer my opinions if you're all interested. My perspective: dialysis mortality hasn't significantly improved in the past 25 years, meaning the old paradigms are not getting the job done. I believe we need to radically rethink the way we provide dialysis care. I certainly have my opinions in terms of what makes a difference and what doesn't when it comes to clinical parameters. However, I also strongly believe that the empowered involvement of the patient is a crucial piece of the puzzle. Without you guys being active and knowledgable about your own care, I don't think it works very well. So, I believe, whatever I can learn from you in terms of improving the facility, staff, operations, etc. will go a long way towards improving outcomes.
Wow! This may seem a bit forward, but can we clone you?
I'm so glad you've joined IHD and I am sure your opinions will be most appreciated. I am not on dialysis, but I know I would certainly love to read your further comments on these important issues.
I look forward to seeing more of your posts! :welcomesign;
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:welcomesign;
Hope you enjoy this site. Hopefully you can answer some of our questions also.
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:welcomesign;
I am a dialysis tech as well and a care giver to my fiance who is on nx stage. I personally think nephrologist need to listen to their patients more and not the nurse who does not know how the patient feels at home. I think they need to stand up for the patients. We have a great nephrologist who does listen to us but he has had a really bad one as well. As a tech I would like for the nephrologist to listen to us. We are the one who knows our patient the best. Nurses pass meds and talk to the patient only when they have to. Us techs talk to our patients every time they are in the clinic.(at least I did when I had a job) I would talk to my patients about how they feel how their lives are in general. I knew alot of my patients lives. Also patients trust techs alot more than nurses. I hope you learn alot from our stories and I would be happy to talk to you anytime.
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Wow! This may seem a bit forward, but can we clone you?
Wow, I love this. I have wondered that about Cariad myself, but that's for other reasons >:D >:D >:D >:D
Seriously though, a big welcome ESRDMD - great to have you with us. I absolutely agree that being an empowered patient really makes me feel better about my situation and that I have some "control" over it - not in a power trip kind of way, but more understanding how it all works allows me to better work with my care team to get the best outcomes, and of course understanding the critical issues like the balance of stuff like K, Ca, PO4, PTH etc and why it's important to keep those in line help ME manage myself better - the diet, the fluids etc, because I know and appreciate *why* it's so important. Also of course just being treated as a human with valid opinions on my own treatment means SO MUCH to me - if I was just treated like an idiot, told to shut up, sit there and accept it, I'd be ina much worse situation I think.
So glad to have you with us when you can be!
:welcomesign;
RichardMEL, Moderator
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i think that making dialysis more like the comforts of home would be a big help. ( I know not so easy in a clinical setting) He always complains about not seeing the same Dr. from his group each time allowing for miscommunication. I feel especially in his case, that educating patient as much as possible is very important and helps them to have a little more control in what's going on and why.
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When I was on hemo for six months, I hated every minute of it. Although I had a permacath, I got tired of the techs threatening me with a fistula and telling me how they would "take care of me" when my PD ultimately failed and I once again fell into their hands. I also got tired of listening to all the alarm bells, most of which went on and on before anyone turned them off. I once called the front desk and asked to have someone turn off my alarm bell which had been ringing for over 20 minutes! I hated it when the techs didn't listen to me. I told them one time they could not take off more than 1.5 kg. Instead they took off 3 kg without telling me. When I went shopping afterward, I passed out in the store due to low BP. I did not feel any professionalism from the techs, who constantly laughed and joked about what they would have for lunch (which we could not eat), played games with one another (they actually set up a basketball net and used a soft ball to play with), etc. That's just some of what I went through, and one of the primary reasons I do PD instead of hemo.
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Welcome to the group ESRDMD! I'm a Social Worker and am here to learn as well as share from this great group. I let my patients know about this website as much as possible and have a flyer posted on my bulletin board about it. There's so much to learn from each other. :cheer:
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Hello MD and welcome to IHD. I'm so glad you found us. My nephrologist knows about this site but has not visited. What would be helpful to me is to have a scheduled DAY for the doctor to visit instead of just pop in and pop out. I'm not prepared when I never know he is coming. Then I forget to ask what I want to.
I'm glad you are here.
Rerun, Moderator :welcomesign;
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Wow! This may seem a bit forward, but can we clone you?
Wow, I love this. I have wondered that about Cariad myself, but that's for other reasons >:D >:D >:D >:D
Richard, you adorable thing, you! :-*
The world is really not ready for two of me, but if it ever is, one of me will be heading straight to Australia! ;)
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Welcome! I hve printed out the flyer for this site, and gave it to all patients, especially new patients. It is helpful to see support and issues from patients. You will learn a lot hear and gain some wonderful insight. :flower;
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Welcome to our community, Doc! This is a an excellent place for anyone in anyway connected to the renal challenge. It is very gratifying when professionals in the field join us. I am looking forward to hearing more from you. You are now part of our wonderful IHD family. :grouphug;
Bajanne, Moderator
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Welcome! I hve printed out the flyer for this site, and gave it to all patients, especially new patients. It is helpful to see support and issues from patients. You will learn a lot hear and gain some wonderful insight. :flower;
Where do we find this flyer? I have told the nurses @ the hospital about the site & would like to print & bring in flyers.
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I haven't looked at it, but I think there's a link on the main page to the flyer
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My perspective: dialysis mortality hasn't significantly improved in the past 25 years, meaning the old paradigms are not getting the job done. I believe we need to radically rethink the way we provide dialysis care.
Try looking into nocturnal home hemodialysis. After six years of NHH I still eat and drink freely, take no meds (except vitamins) and have better health and vitality than most men my age. Your perspective is obsolete.
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Hello Doc, To truly understand people on dialysis, is to join a group, buy a building, pay the techs a a living wage. Do not sign on to THE leaders in dialysis ( The large providors) Treat your patients as patients. Too many units fill chairs. Hire RN's and techs who do not scare new folks to the point the cry. Outmost, We all know you are trained well. Spend some dough on REAL training for the techs. I have been to different units during traveling. Some are good -some are within state regs. We do not need to do better, the units need to remember we are Americans, pay taxes, and probably pay mo' in taxes than they do. Life goes on for dialysis patients. You have to make a living. Fairness is the word. Peace, Senior-Chief
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My perspective: dialysis mortality hasn't significantly improved in the past 25 years, meaning the old paradigms are not getting the job done. I believe we need to radically rethink the way we provide dialysis care.
Try looking into nocturnal home hemodialysis. After six years of NHH I still eat and drink freely, take no meds (except vitamins) and have better health and vitality than most men my age. Your perspective is obsolete.
It's not an obsolete perspective - it's true for the vast majority of patients. He's talking about the stats for all the D patients, not just the few on better treatment plans. You are lucky to live in an area where nocturnal is offered, and lucky to be capable of doing it at home. I had to fight to get my clinic to even think about offering Nxstage. In center or home nocturnal is a pipe dream here, and that's true for a lot of rural areas like mine. The "old paradigms" are still the standard of treatment for in-center patients, which are still the vast majority.
Welcome, ESRDMD. We do love to hear from the other team! ;D
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:waving; It's good to have you with us. You sound like a great Doctor. :beer1;
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One of the best things you can do for your patients is accept the fact that dialyisis and CKD-5 can involve significant trauma for many patients and encourage your patients to seek out a psychological consult or counseling. Depression is rampant, and one of the consistent variables in long term successful dialyzors and sucessful transplant candidates is that they are able to get support through depression and develop good coping strategies.
Also, remove the term "compliance" from you vocabulary and replace it with "accommodation". This changes the power dynamic in the conversation.
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Also, remove the term "compliance" from you vocabulary and replace it with "accommodation". This changes the power dynamic in the conversation.
I hate the word 'compliance', always have. It has that submissive sound to it. I use adherence since it sounds more neutral to me. I have not heard accomodation, but I agree with the sentiment that anything that makes patients feel like doctors are taking control away from them will alienate a large segment of the population. Surely there is some better way to deal with non-adherent patients than to further infantalise them by saying "do as we say or we take you off the list"? I have heard far too many stories of abuse of this power.