I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Adam_W on April 28, 2007, 05:41:48 PM
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What is everyone's view on self-care dialysis. I'm fighting tooth and nail to get it in my centre, but what are your views on it? Take care.
Adam
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I've just started home training and listening to the benefits Its the way to go, but then I'm not home yet, but after talking to other people that take control i think it is the way to go. I'll keep you posted on how i go..
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I say KEEP UP THE FIGHT my friend, i am on PD, which is different from home hemo but it is another form of self care dialysis. I hope that you will get your way soon, i know you will be much happier and feel better :2thumbsup;
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Do whatever it takes to make you happy while on dialysis.
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How what do you do if your access is blocked?
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The following is an article from Kidney Times, a service of the Renal Support Network:
Returning Control to ESRD Patients Through Self-Care In-Center Hemodialysis
EasyLink Access #: 103
By Susan H. Bray, MD, MBE, FACP
Self-care hemodialysis (HD) may be defined as a treatment modality that introduces the patient into an independent continuum of care by achieving greater knowledge of both the renal disease and the dialytic processes. It is a means by which patients can again achieve an active, meaningful lifestyle associated with a feeling of physical and emotional well-being.
Self-care HD is a mechanism of granting empowerment and control to patients who have entered Stage 5 chronic kidney disease (CKD), or end-stage renal disease (ESRD), and are beginning dialysis. The process of beginning a dialysis regimen has been very disempowering to many patients, and they often feel victimized and totally out of control due to the loss of their vital kidney function and the need to be kept alive by artificial means.
In the course of my many years of providing this treatment modality to qualified patients, I have developed a number of important points that should be helpful for those renal healthcare professionals who are considering initiating self-care HD in their own facilities.
Staff Commitment
Of primary importance is the dialysis facility staff. It is imperative that each staff member is totally committed to the concept of self-care in-center HD.
The teaching and provision of care needs to occur in a separate space, not intertwined with maintenance dialysis. That separate space can be an entire building, a different room in the facility, or even a different shift that's totally dedicated to self-care dialysis.
Educating the Patient
It is important to begin the patient's education on Day One of his or her outpatient dialysis treatment. If the patient is settled into a dialysis chair and is treated without first being educated, he or she very quickly settles into the "I am the patient, you take care of me" mentality. It is very difficult to give control to this person after the patient is settled into this way of thinking.
Beginning to educate the patient right away is important, even if the patient just sits, watches, and hears what the nurse or technician is doing and saying. As the patient becomes less uremic and more able to learn and retain what has been learned, he or she formally begins the education process. It is important that each staff member use similar teaching mechanisms and that they teach the aspects of dialysis in the same basic order. This method ensures both a continuity of teaching and retentive learning.
Expanding Role of the Social Worker
Every member of the staff play key roles in providing and maintaining a successful in-center self-care HD training program. The social worker can do much more than try to get patient transportation or financial issues solved. The social worker can also help the patient in goal-setting, including returning to work or school or vocational training. The Office of Vocational Rehabilitation has been very helpful in getting some of our patients into training sessions and even into college, with the hope that the patient will return to the “work world” and therefore the “tax-paying world.”
The social worker can also be helpful to the person staying at home to maintain the household. It is important that patients return to their hobbies. If they loved to travel before, they can continue to do so, since dialysis can be made available almost anywhere in the world.
The "Eating Police?"
Dietitians are not the "eating police!" Rather, they should serve as consultants and encourage patients to eat well and reasonably. The renal dietitian serves to educate patients about the risks of consuming potentially dangerous foods and fluids in excess, and to encourage them to control the fluids and foods that they ingest. Additionally, teaching patients to intravenously administer their own vitamin D analogs and erythropoietin (EPO) to control the effects of anemia can be very empowering. You would be amazed at how much in control patients feel when they can give themselves their own medications through the venous line!
The nurse-driven protocol includes educating patients on the mechanisms of action and possible interaction of the drugs they are taking and stressing the importance of adhering to taking the necessary drugs. We do not allow food to be eaten while the patient is dialyzing for a number of reasons, not the least of which is that it attracts critters. Also, the patient may be sending the blood flow to his or her gut to digest food,thereby allowing the blood pressure (BP) to drop. This, in turn, may cause the patient to cramp or become hypotensive (low BP).
From Cramping to Group Networking
During dialysis, the fluid loss is limited to approximately one kilogram per hour, allowing the patient to avoid cramping. Patients are educated on how to check their dialyzers and to confirm that they have the correct dialyzer.Then the patient, along with the nurse or technician, signs the chart affirming that these steps have been taken. Laboratory values are reviewed and discussed with the patient, and a copy is given to him or her. The patient is taught how to manually check his or her vascular access daily.
As the patient progresses in knowledge, individual tests are given for each step in setting up the machine and the monitoring of dialysis. After the patient has passed a test, he or she moves to the next stage of the learning process. Patients are also encouraged to participate in network activities through either the Internet, support group meetings, or such organizations as the Renal Support Network, the American Association of Kidney Patients, and the National Kidney Foundation.
Barriers to Self-Care Dialysis
Initially, patients have many concerns about trying self-care HD. Over the years, these patients have been queried as to what some of those concerns are. The most common comment is that "no one ever told me about it." Therefore, I am convinced that continuous education is needed by both the medical care team and the patient, who is as an integral member of the team.
Other barriers to self-care HD include:
.... Fear of self-cannulation (needle sticking).
.... Being comfortable after settling into a maintenance dialysis facility.
.... Poor self-confidence.
.... Poor dexterity.
.... Limited vision.
.... Fear of machinery.
.... Drug or alcohol addiction.
.... Mental instability.
"Ongoing Education"
The time frame for educating the patient in setting up his or her own machine, self-cannulation, and monitoring the treatment is variable. Some people can get it done in a matter of weeks. For others, it can take months.
Some patients are in an "ongoing education" scenario. They move back and forth in the continuum, but they are trying and are involved in their care to the extent that they can be.
Self-Care Criteria
Facilities also need to fulfill certain criteria for self-care dialysis. These include:
.... Separate space exclusively for self-care.
.... Staff, including the medical director and nephrologists, who totally embrace the principles and expectations of self-care dialysis.
.... Dedicated teaching staff members.
.... Ongoing in-services for dialysis-related conditions.
The Desire to Learn
There are certain selection criteria that we have developed over the years. The single most important criterion is the patient's desire to learn. As long as someone has this desire, the staff can creatively work with that patient. It helps greatly if the patient has a stable medical condition, a well-functioning vascular access, basic manual dexterity, some vision, and an agreement to remain in compliance with the expectations of the nephrologist and other members of the renal healthcare team.
It would be beneficial if patients could begin their dialysis education before they reach Stage 5 CKD. This could go a long way toward allaying patient fears and clarifying what to expect when ESRD requiring dialysis or a kidney transplant is reached. Education leads to a sense of increased control and empowerment. It will also lead to better compliance and adherence with the dialysis and medication regimen. This, in turn, will pave the way to improved physical and emotional health and an overall better quality of life (QoL).
"A Much Lower Mortality Rate"
It has been our experience that the emotional and physical support of the patient during the education process has led not only to a better QoL in general, but also to fewer hospitalizations and to a much lower annual mortality rate.
In our self-care dialysis facility, there are 46-50 patients who live in an inner-city environment and who have a mortality rate of approximately 2% per year. [Editor's note: This annual mortality rate is far below the 23% nationwide rate.] They also have a transplantation rate that is above the norm.
Conclusion
Patients progressing through the stages of CKD can begin their education about kidney disease and dialysis before they become uremic. Self-care in-center HD can and should be proposed as a modality to all patients who voice an interest in learning about their disease and their care. Those who choose this modality should look forward to returning to a good QoL associated with return of a sense of control over their own healthcare.
It is also important to remember that the nephrology team helping to provide care and education for the patient includes not only the physician, nurse, patient care technician, social worker, dietitian, and other office staff members, but the patient him- or herself. Studies have shown that patients who take charge of their own healthcare live longer, healthier lives.
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About the Author
Susan H. Bray, MD, MBE, FACP, is Clinical Associate Professor of Medicine at Drexel University College of Medicine, Philadelphia, PA. She is also a practicing nephrologist, teaches renal fellows and medical students, and supports the self-care in-center hemodialysis concept. Bray founded the Chestnut Hill Dialysis Center in Philadelphia in 1980, which has been a beacon for self-care in-center and home dialysis.
Last Updated April 2007
http://kidneytimes.com/article.php?id=20070207125202
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Do whatever it takes to make you happy while on dialysis.
Couldn't have said it better, kitkatz. I cannot wait to get back to PD.
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:bump;
For my friend, dwcrawford.
8)
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I do home dialysis with the NxStage machine. I'm not going to lie; it's a bit of work, but I like being pro-active in my own care. It offers more flexibility in my schedule AND I do feel better because I'm dialyzing 6 days a week.
I like it, and if you can do it - I reccomend that you do.
~Steve
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Thanks Zach, that was a great article! I am interested in any and every type of self-care...
Are some of you in-center folks setting up your own machines? I didn't even know it was an option. I would love to do it!
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I was at a self-care center (in Toronto, Canada though) and we set up our own machines and a few of us did our own everything. I only needed a nurse if I dropped a pen or something else.
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Thers a man in my hubbys center that does self care. He comes in, weighs himself, does the sticking, setting up, all of it. (of course not in that particulsar order) He's really happy with this way of doing it as he said he used to do it at home but it was so invasive to his whole family where with this, he just slips out,does the deed, and goes home... Each to his own, but im glad he found his way..
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:o no way to self care!! I couldn't even do nocturnal dialysis due to my anxiety! I'd probably miss my arm and stick my leg! :rofl;
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I would love to use the NxStage.
But I'm not eligible, because I live alone and I have no partner.
As for home PD,
I hate all types of catheters. To me, a catheter + time = infection.
Since I'm allergic to a lot of different antibiotics, I can't afford to get any serious infections.
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Rightside, I have to wonder if that rule will change in the US as it's not the case in other countries. Who knows?
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Thanks Zach my friend,
Why didn't you tell me you had posted this? I just now found it.
To everyone else: Zach knew that my center is getting ready to start a self-care program and I've been asked if I want to be the first. I'm a little scared (so wasn't going to tell) but I can do, according to my nephrologists and the centers representative, as much or as little as I want to. Yes, I'll try cannulating myself. Ouch!
Santa Donkey courtesy of Okarol.
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You are brave DW and anyone else that self cannulates. I have trouble sticking myself with the itty bitty insulin needles. I think getting involved in your health care is great and hopefully my next go-round with dialysis I will be more in control.
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I would like to do everything except stick myself. That should save the centers money and that is what it is all about.
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I would love to use the NxStage.
But I'm not eligible, because I live alone and I have no partner.
As for home PD,
I hate all types of catheters. To me, a catheter + time = infection.
Since I'm allergic to a lot of different antibiotics, I can't afford to get any serious infections.
I am with you 100%! No more catheters for me, and I also live alone. I am going to pursue the nxstage anyway if I don't find a living donor match within the next 6 months. There are so many benefits to home dialysis!
In the mean time, as soon as my fistula is ready, I am going to learn self-cannulation and get some buttonholes going while I'm in-center. I'm also going to ask about setting up my own machine...fun!! ;D
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Dan please let me know how self cannulation goes, i'll be doing mine when i start.
Honestly any type of self care (home or clinic) is better. All the nurses and Dr's i've spoken to advise self cannulation as the fistula lasts longer and there are less chances of infiltration as you know your own fistula.
As for home dialysis, i think it is the best option as you can manage your own life. I'm really independant, i don't even let my hubby take on 'carer' role, I'm the carer in the house. To me i'm quite capable of looking after my husband, son and household (so what if the dishes aren't done straight after dinner!) whilst running a home business so why should i need someone to 'care' for me. I can programme a tv, set up a computer do basic plumbing, a little bit of mechanical and i already do my own aranesp injections.
In OZ having a partner isn't a prerequisite for HHD, John is only allowed to come to training for the last day so that he isn't so overwhelmed by the machine when it comes home and so that he knows what to do incase of emergency (but our nurse hasn't really had any problems, she said they run our machines slower and take less fluid so there really aren't any problems)
Lori, I really hope they let you do the nxstage. Ask them if there are any home alone trials going on? maybe there will be some that you can get into. I'll try and get some info for you from my training nurse (i'll scan the manual they give us so you can show them home alone haemo is done).
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Manuela, please note I s aid that I am going to “try” to self cannulate. Lol Gail (monrein) once had a good analogy about pinching one’s self vs. being pinched. I’ll see if I can find that.
Why shouldn’t I do some things for myself? No, I don’t want all that equipment in my house. It’s ugly and doesn’t go with my décor (joke). I’d rather go to the center, see a few buddies, and then lay around for four hours (no, that’s not my favorite part but I wouldn’t like hanging out not moving around at home either. I doubt it will save Davita any money, but if it does maybe they’ll buy me a brand new chair. (FC – fat chance)
My surgeon, nephrologists, access center surgeons all say self cannulation with help kept the fistula longer and healthier. And Buttonholes (that’s another issue but I’m sold on it)… also, to me and with the cream, the “hurt” isn’t that bad (most of the time). The nurses don’t want me self cannulating because they enjoy giving pain (Not sure is Thanh is a masochist or if she just likes learning a new dirty work each dialysis day.)
I am able bodied, have lots of energy (most times) and inquisitive. Why shouldn’t I get involved more? Zach has taught me a lot but I think he’s getting tired of fooling with me and getting ready to kick me out on my own. Lol So I need to get busy and learn.
And I am open to suggestions, warnings, etc.
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Just good luck :2thumbsup;
I don't think it matters where you do it really (personal preference) but i do agree taking control is heaps better. I :pray; hopefully start this month (if all goes well friday - surgeon appt and on the 11th Neph appt). Getting sick of the ups and downs with PD and just can't wait to get started training. I'm betting that thinking about that first prick (no not being dirty :oops;) is going to be worse than the actual stick so i'm hoping to be really brave and do it first or 2nd time (our nurse is willing to do it once for you but then she apparently gets a litttle more pushy).