Just wanted to say hey

Discussions for Patients, Family, and Friends HD For Patients
1

hey everybody,

   i am 24 and have been doing home hemo for a lil over 1 year. so far i like it alot better then the in center dialysis. i seem to have more free time and feel alot better after i do my treatment. so i just wanted to say hey and tell a lil about myself. if neone has ne questions just feel free to ask.
2

[QUOTE=MRB47303;18891]hey everybody,

   i am 24 and have been doing home hemo for a lil over 1 year. so far i like it alot better then the in center dialysis. i seem to have more free time and feel alot better after i do my treatment. so i just wanted to say hey and tell a lil about myself. if neone has ne questions just feel free to ask.[/QUOTE]

Hello MRB,
Welcome and I hope the dialysis process is making you healthier and stronger for being 24 is a young age to be on dialysis, but as you may or may not realize, illnesses do not discriminate. I lived with Lupus for 27 yrs and it finally told my kidney’s to stop working. The fight has been a long one and sometimes not an easy one at that so keep up a strong will to survive and do not succumb to any illness for this thought of strong Will To Survive I think has helped me live this long and still feel good for who I am. People with lupus usually do not live long. I am Living Proof that you can survive a Fatal disease. Sometimes you must become keenly aware of what you must do to Survive, for this has got me here today posting a reply to you. I hope you are doing well and if you have a care taker, I hope he or she is as wonderful and Knowledgeable as my Fiance Guy (my loving and devoted care taker 11 yrs). For these are the KEY ingredients to a Fruitful life of Healthy Spirits.
Karen~

3

What are the risks of home HD?
Home HD has the same risks for complications that exist with in-center HD, including low blood pressure and infection. The most serious risk is the possibility of an air embolism— a condition in which air is introduced into the blood stream accidentally, preventing the heart from adequately pumping blood. Another serious risk is blood loss if a catheter separates. Home HD patients and their helpers learn to watch for these problems and are trained to act quickly if they arise.

What are the advantages of home HD?
Home HD lets the patient set the schedule. The patient can choose treatment times to fit other activities, such as going to work or caring for a family member.
The patient can dialyze more often at home. People who dialyze at a clinic skip 4 days each week, so wastes and fluid build up in their bodies. Dialyzing at home five to seven times per week means wastes and fluid don’t build up as much in the body. Muscle cramps that are common in people using the standard HD may be less common in those who choose home HD because wastes and fluid are cleared more often.
Treatment plans usually follow one of two schedules:
Short daily treatments—Some people dialyze at home during the day. Because they do it every day—or at least five or six times a week—they do not have to dialyze as long. They can finish in 2 or 3 hours. And they save even more time because they do not have to travel to and from the clinic. Daily treatments keep blood pressure more level than standard HD. Many people who do daily HD no longer need blood pressure pills.
Long nightly treatments—Some people dialyze at night while they sleep. Then they have the whole day free for other activities. The longer time of nightly HD allows for a slower blood flow rate. This gentle treatment is easy on the patient’s access and heart. Because the treatments are so long, they remove more phosphorus and other wastes than short treatments can. Many people who do nightly HD no longer need blood pressure pills or phosphate binders. Nightly HD is done from 3 to 6 nights per week.
The schedule can be tailored to fit each person’s needs.
Because use of home HD is still increasing, researchers have not been able to do large studies that compare home treatment with standard HD. But dozens of small studies have found better results in patients who do daily or nightly home HD. Reported benefits include;
*better blood pressure control with fewer drugs
*better control of phosphate levels in the blood
*less limited diet and fluids than standard HD
*reversal of some heart damage caused by high blood pressure
People who do home HD say it improves their quality of life. Those who have switched from standard to more frequent home HD say they have more energy, feel less nauseous, and sleep better. Many say they value the control they gain by doing their own treatments.
What are some barriers to home HD?
Although growing, the number of clinics that offer home HD is limited. Some patients may find that the nearest home HD clinic is an hour or two away. See the Home Dialysis Central website at www.homedialysis.org to find clinics that train people to do home HD.
Insurers that pay for HD treatments, including Medicare, have set payment based on the standard schedule of three treatments a week. Clinics may limit daily HD to those who have employer group health plans because payment from Medicare alone would not cover their costs. Medicare rules state, “Claims for hemodialysis furnished more frequently than three times per week must be accompanied with medical documentation explaining the reasons
for the additional dialysis sessions. A doctor may need to write a letter saying that daily HD will help the patient have better outcomes. Patients should talk with their insurance provider or clinic social worker about whether payments for daily home HD will be covered. Nightly home HD can be done three times per week and can be paid for by Medicare alone.
Points to Remember
New, smaller dialysis machines are making home hemodialysis (HD) more practical.
Training for home HD takes 3 to 8 weeks.
People doing home HD can choose between shorter daily treatments or longer nightly treatments.
People who do home HD say it improves their quality of life.
Patients should talk with their insurance provider or clinic social worker about whether payments for daily home HD will be covered.
also seeks to increase kidney graft and patient survival and to improve quality of life.
The Frequent Hemodialysis Network (FHN). This multicenter clinical trial will test whether HD done more than three times a week has better outcomes than the standard schedule. The FHN is testing two ways to increase the dialysis dose at Clinical Centers in the United States and Canada. The FHN Daily Trial compares standard HD, done for at least 2.5 hours, 3 days per week, with more frequent HD done for 1.5 to 2.75 hours, 6 days per week. The FHN Nocturnal Trial compares standard home HD done 3 days per week with nightly home HD done 6 nights per week

4

Inspiring Thought of Support from Others:

“We seek the comfort of another, Someone to share the life we sometimes do not choose, Someone to help us along the neverending attempt to understand the meaning of life in ourselves, And in the end, someone to comfort us along the way”.

The Impact of Home Hemodialysis on Patient Quality of Life, and How
to Encourage It:

A Patient’s Perspective:
Nowadays, whenever modernisers or visionaries talk about change, the phrases ‘self-care’
or ‘care in the community’ are never far from their lips. This is especially true for those
who commission kidney care services - where dialysis unit dependency is the rule and for
many patients’ self-care and independence is a far-off dream. This article explains why
this need not be so. By drawing on the experience of the author, it explains why for many
dialysis patients a successful transition can be made to being an active, independent and
self-managing patient - through home haemodialysis.
I would like to share with you my own experience, firstly, of the difference between unit
and community dialysis, secondly, of the impact on my quality of life of switching,
thirdly, of why so few patients take up this option, and lastly, of what physicians, staff and
managers can do to change that!
The Difference Between A Unit & Community Care: The Dialysis Experience
First, I would like to help you visualise the difference between ‘unit’ and ‘home’ dialysis
~ from this home dialysis patient’s perspective!
Generally, dialysis of patients in a dialysis unit setting reinforces patients’ passive
involvement in their own healthcare. Staffs prepare the machines, take patients’ BP and
weight, administer lidocaine, and insert the dialysis needles. During treatment, the patient
often sleeps restlessly for the 3-4 hours, sees a physician or specialist on-demand and
finally gets home after a 6-8 hour round trip (including hospital transport). Despite
admiration for the staff who keep him alive, he regularly feels drained and disillusioned
after this thrice-weekly routine. Hospital dialysis discourages full-time work, and is very
intensive in its usage of healthcare infrastructure, staff and patient time. Many such
patients ‘live to dialyse’.
In contrast, when you enter the house of a patient who dialyses at home you may feel you
have come to the wrong house! Generally, they appear alert, healthy, and self-sufficient ~
and you may be surprised to spot a kidney machine tucked away. With the aid of a helper,
the machine is often jointly set up, self-needling is the norm, and dialysis time itself feels
productive, not wasted, as the comforts & distractions of home life are enjoyed. Generally
dialysing longer, eating and drinking more, the patient has more energy, takes less
medication, has a better quality of life, fewer admissions, & feels more in control than his
hospital counterpart. Such patients dialyse to live.
Why Are Patients often Reluctant to Accept such Treatment at Home?
So why is it only 1 or 2% of kidney dialysis patients opt for ‘care in the community’?
The answer is complex BUT reversible: not enough is done to dispel the fears and preach
the benefits of moving from the seeming comfort of a low risk unit setting.
For every individual patient, these fears are real, rational and overpowering: some of my
own fears prior to starting home dialysis 10 years ago included the following: -

  1. Self-needling: Could I really learn the skill ~ and find the courage?
  2. The machine: Would I ever understand it? It seemed so daunting;
  1. I was sick, wasn’t I? Could I manage my fluid, diet, anaemia etc. at home?
  2. What about my carer? I was single ~ could I find a committed carer?
  3. ‘Hospitalisation’ of my flat: Shouldn’t I keep my treatment separate?
  4. I was no DIY expert: Could I manage all the changes needed to my flat?
  5. Machine problems? What would happen if things went wrong?
  6. Would it deter others? Wouldn’t it turn off family, visitors or girlfriends?
    To my genuine astonishment, I soon discovered after my rigorous training and the initial
    few trial runs, that virtually every single one of these fears proved groundless. In short,
    self-dialysis at home was safe; machine or health hiccups were incredibly rare (3-4 times
    in 10 years); support was comprehensive and inspirational, and delivery of my supplies
    was friendly and well managed.
    The ‘Holy Grail’ of Patient Self-management: The ‘Active’ Patient
    Despite rumours to the contrary ‘active’ patients are not born ~ they evolve! For many
    patients, there is a catalyst or specific event in their clinical history that triggers a desire
    for more information, different or better treatment options, and an alternative clinical
    outcome! In the current climate, all healthcare managers, physicians, nurses and staff have
    the power to play a pivotal role nurturing and creating active patients ~ and encouraging
    their migration to the community.
    For many clinicians and patients, management of kidney failure gets tougher and tougher
    as time goes on, and patients rarely look forward to a full life span ~ even with a
    transplant.
    But, for me, after 27 years of kidney Disease, home dialysis sounds like it can still offer hope AND a quality
    of life to enjoy those remaining years. Partnering with a remarkable team of home dialysis
    professionals has been THE catalyst that has helped transform all aspects of my healthcare

How Can we Develop an ‘Active’, Self-caring Patient Partnership?

  1. Nurture NOT force: You cannot force patients to be more ‘active’
  2. Expand Patient Education: Ease fears of new/community-based treatments
  3. Boost Peer-to-Peer support: Ask early adaptors to help ‘spread the word’
  4. Promote ‘informed’ Choice: Patients must make own informed choices
  5. Align your interests: E.g. Home dialysis: good for patient, good for staff
  6. Staff need support too: Staff need time and added resources to adopt working
    practices to genuinely partner with patients
  7. Co-morbidity support in a home setting is KEY: By focused outpatient support,
    help patients in search of co-morbidity & disease ‘mastery’
  8. Create strong primary/secondary links: Informed primary care practitioners’
    support is a must
  9. Create a 24:7 Hotline: Even independent patients need back-up!
  10. Seek feedback: Keep ‘on track’ with surveys, focus groups, etc.
    Most important of all, the lesson I urge you each to take away from my experience, is to
    believe that to nurture self-managing, active patients in the community, you do not need to
    re-start the Manhattan Project!
    The healthcare system already contains in abundance the single most important
    “ingredient” for inspiring patient participation. For me, it was the remarkable home
    dialysis professionals themselves, who by offering me the hand of friendship and
    partnership from the very start, inspired me. They inspired the creation of a unique, equal,
    open and unprecedented ‘active patient’ partnership between patient and healthcare
    professional, that has transformed me ~ and my quality of life.
5

Welcome,

I don’t spend a lot of time here, but wanted to welcome you none the less. I am 29, and have been on dialysis for 5 years this month (since I was 24 ironically).

I would agree that home hemo is better then in center - for me personally, I feel so much more knowledgeable, which truly is half the battle. I think initially I struggled the most with trying to fit it with my peers, I didn’t identify with many of the more ‘mature’ patients - now though, is seems all the same. I dictate my schedule within reason, get to go to my daughters parent teacher interviews, etc. Making the best of it for sure!

I think you will find a very supportive group here.

Kidney_Mom in Canada

6

Hi Karen, thanks for sharing these articles. If you weren’t the original author, can you please share the source with us? We want to be sure to give credit where credit is due. :slight_smile: