Barriers to home dialysis

[livecam]

I will not take six weeks off of work to train for dialysis.  This is a ridiculous expectation on their part!

Do it when school is out of session for summer break. 

[kitkatz]

They will not work with me for that time frame. It has to be in their time frame. How convenient is that for me?

[Joe Paul]

Petey, I believe that what you regard as 'errors' in my account of my personal experience while I was on home hemodialysis has to do with the fact that you are comparing your experience with NxStage with my experience with a conventional Fresenius dialysis machine placed in the home.  NxStage was not available in Canada when I was on home hemodialysis in 1996. 

Needless to say, I stayed with that form of treatment only a short while, mainly because it interfered with my psychological coping mechanism for surviving on dialysis.  For me, in-center hemodialysis was just a ritual which required me to sit in a given chair for four and a half hours while nurses ran around me doing one thing or another, and while I read books.  I used to think to myself: so what's the problem with having to sit in this chair reading rather than having to sit in a different chair at home and read?  But that whole intellectual strategy was defeated when I had to involve myself actively in the whole treatment process which, as I have said before, was for me like being a condemned man being forced to build the scaffold that would hang him.  You don't want to have to spend years of your life staring at the photograph of the person who will some day kill you, or taking apart and putting together the car that will one day run you over and end your life.  In the same way, you don't want to spend every day of your life fiddling with the machine that symbolizes the fact that disease has destroyed your chance of a normal life.

I am glad you responded stauffenberg, as I started to defend your point of view (edited my response to just say Ugh). People who are caregivers, though they SEE dialysis first hand, have no idea of the horrors we as patients may see dialysis and its machines, no matter what kind of front we put up. I am not slamming caregivers, they are important, its just living on a machine doesn't mean the same thing to every person, after all the name of the site is I HATE DIALYSIS, in capitol letters no less.

[brenda]

Home-hemo is nothing like it was in 1996. I know I was there then and I am here now. Going home was the best thing I ever did. Yes it was a little scary at first needling yourself, and yes I worried about the possible emergencies that could occur and yes I doubted that I could handle having the machine in my house 24/7. Home-hemo doesn't necessarily mean 6 night's a week. I still just do three evenings a week after work and have been for 14 years. Everything here in Alberta anyway is paid for. The electrical and plumbing is all taken care of. There are space issues. First of all you have to have a comfortable space for you and your machine, then there is the RO tanks etc, then room for your supplies. The contract with the Health Region for delivering supplies requires that they place it exactly where I want it. All I have to do is show up when they call me and unlock my door.

The freedom obtained from Home-hemo far outweighs the worries. I can run any evening I want. And I certainly don't think about dialysis just because my machine is setting there. It's all what you make of it really. But i would far sooner sit in my own home, in my own chair, nap or watch TV than sit and look at what's going on in those units. It's a lot easier to sit here for 4 hours then at the unit for 4 hours.

And Kit, I know it seems frustrating trying to get the time to train but it's only 6 weeks once and it's freedom for the rest of your dialysis life.

[CW]

My biggest barrier is that I do not have a partner but some others are
fear of home hemo
fear of sticking needles in my own arm
fear of having to make changes to the home I am in
fear that my home hemo machine is watching me sleep and plotting my demise

[petey]

Stauffenberg -- Perhaps the reason why I questioned your accuracy in home hemo facts was that, in your original post, you predominantly used the third person pronoun ("he") rather than the first person ("I").  This seems to group all people together, and, as we all know, no two dialysis patients are alike and each has a different opinion/outlook of dialysis and a different experience.  The only time you used "I" was when you told how much you had to pay to have plumbing adjustments made to your home to accommodate the home dialysis machine.  The rest of the post, you used "he."  For example, you said having a dialysis machine in the home was like "...being a condemned man having to build his own scaffold, and the patient has to be prepared to have his faced rubbed every day in the fact of the disease and the machine which have ruined his life...."

I merely wanted to point out that not all dialysis patients feel this way.  I wanted to make sure that someone reading your post knew that Marvin and I did not have the same opinions of home hemo as you detailed in your post; we have had a very different experience.  If you'll check my post, you'll see that I used the first person point-of-view because I wanted to explain my and Marvin's experience with home hemo.  I wanted any "new" dialysis folks to see that not all of us consider home hemo a "horror," and the best way to do this, I thought, was to tell our positive experience with home hemo.  Instead of generalizing your comments and seeming to lump all dialysis patients into the same category, you might consider starting your posts with, "It has been my experience...."  This would make it more clear that you are expressing your feelings (instead of speaking for all of us).



And, Joe Paul, don't you dare insult me by saying this...

People who are caregivers, though they SEE dialysis first hand, have no idea of the horrors we as patients may see dialysis and its machines, no matter what kind of front we put up.

For your information, I live with ESRD and dialysis, too (and I'm the healthy one).  This is not merely something that I SEE happening in my husband's life; it's affecting my (and OUR) life, too.  Dialysis has changed my life and has created obstacles that I must deal with, also.  I'm not a spectator in Marvin's life -- I'm an active participant.  Even though the needles are not put in my arm every day and even though I don't have to stay hooked up to that machine for hours every day, I'm in this with Marvin every step of the way.  I hurt when he hurts (even though his is a physical hurt, mine is no less because it's hurting my soul to see him in pain).  There has not been a minute (NOT A MINUTE) in the last 13 years when I haven't been right beside Marvin in everything he's been through with ESRD, dialysis, and transplantation.  When you said that caregivers have "no idea" of the horrors that dialysis patients live with, you were most definitely incorrect where I am concerned.

Perhaps Marvin and I are different from some other dialysis patients and their respective partners.  We are a team.  What he has to live with, I have to live with, too.  What he has endure, I have to endure, too.  When he hurts, I hurt.  When he succeeds, I succeed.

For you, Joe Paul, to infer that I only SEE the experience of ESRD and dialysis because I'm only Marvin's caregiver is insensitive, offensive, and just plain wrong! 

[willieandwinnie]

petey, AMEN. Len said last night that everything he has gone through has been harder on me (I didn't receive pain medication or medication that doesn't let you remember). I was the one that sat through (never left his side for 6 months he was in the hospital) his 3 months of an induced coma, at least 21 operations (I have put my time into many surgical waiting rooms), when he died twice (my whole being was sucked out of me), he said he was not in pain and didn't know what was going on (thank God), but I did, every second. I was the one that went to him about home dialysis (I have a fear of needles), I wanted to take care of my soul mate, my best friend, my lover and my husband. I wasn't the one physically going through the dialysis process, but rest assured I felt his pain in my heart and soul (I still do, everyday). This is OUR life and we are ONES dealing with everything that is related to ESRD. If the need arises again for dialysis, WE will again do home-hemo for OUR benefit. This has just has plain PISSED ME OFF.

[paris]

I have been thinking about these posts for a couple of hours.  I must speak up as the one with ESRD, not the caregiver.  Joe Paul wasn't trying to offend anyone. We, as the patients, need a safe place to vent, to share, to complain or just compare.  My husband is loving, caring and worries about me all the time.  But, late at night, when it is dark and quiet, he can't know the fear, the pain, the disappointment, that I have.  He does all he can, but in the end, it is still me who has kidney failure.  We love our caregivers and know they make our lives easier.  I wouldn't wish this disease on anyone and I would rather it be me than my husband.  My sister-in-law died of breast cancer. Her loving husband never left her side. He was the perfect caregiver and support.  But, Lisa died and Dick still lives. He is heartbroken, but is going about rebuilding his life.  He knew she was in pain and very worried, but it wasn't him.  There is a difference.    Joe Paul is one of the sweetest members and always gives encouragement to others.  So, understand, we need to beable to scream somethimes that unless you have ESRD, you can't know the full impact of the disease.  That doesn't take away from the incredible bond you have with your spouses.  Your husbands are very fortunate to have you. 

I know this post if off topic. Most of this belongs in the "caregivers" section.

[lola]

I have been thinking about these posts for a couple of hours.  I must speak up as the one with ESRD, not the caregiver.  Joe Paul wasn't trying to offend anyone. We, as the patients, need a safe place to vent, to share, to complain or just compare.  My husband is loving, caring and worries about me all the time.  But, late at night, when it is dark and quiet, he can't know the fear, the pain, the disappointment, that I have.  He does all he can, but in the end, it is still me who has kidney failure.  We love our caregivers and know they make our lives easier.  I wouldn't wish this disease on anyone and I would rather it be me than my husband.  My sister-in-law died of breast cancer. Her loving husband never left her side. He was the perfect caregiver and support.  But, Lisa died and Dick still lives. He is heartbroken, but is going about rebuilding his life.  He knew she was in pain and very worried, but it wasn't him.  There is a difference.    Joe Paul is one of the sweetest members and always gives encouragement to others.  So, understand, we need to beable to scream somethimes that unless you have ESRD, you can't know the full impact of the disease.  That doesn't take away from the incredible bond you have with your spouses.  Your husbands are very fortunate to have you. 

I know this post if off topic. Most of this belongs in the "caregivers" section.

as a caregiver, I two need to "stick" up for JP he would NEVER mean to say something to offend a caregiver he has been nothing but kind and helpful to me. Sometimes we say things here that others take personal even though that is not the intent. 

[okarol]

Caregivers ROCK!

That being said...

Let's try to stick to the topic "Barriers to home dialysis" - it's gotten a little off track here.


okarol/moderator

[aharris2]

No doubt the main bottleneck is the extremely limited number of machines available for home hemodialysis.  Another problem for some people is that they have to have the water pipes leading into their house modernized to allow for safe hemodialysis, and this can be too expensive for some people.  I had to pay $3400 to have the old pipes leading from the water mains to my house replaced before I could start home hemodialysis.

There are further subjective factors that make people not want this option.  They are forced to deal with dialysis constantly, rather than just three days a week, since they endure treatments for six nights and then have to clean the machine on the seventh day, so the well-known phenomenon of 'dialysis fatigue,' usually found in PD patients, begins to set in.  Some patients are afraid of the danger of lines coming loose or some other emergency occurring outside of a hospital setting where it could be corrected in time to prevent death.  There is also the problem of space, since one room is taken up as a sterile area for the machine, while another room is wasted for storage of supplies.  The need to be in charge of the logistics of getting the dialysis supplies ordered, checked, and stored can also be draining.  Even with all this effort at home, the patient still has to go to the hospital or clinic periodically for certain types of blood tests and for medical appointments, both of which would otherwise have been much more conveniently handled during the in-center hemodialysis sessions.  Finally there is the psychological stress of being a condemned man having to build his own scaffold, and the patient has to be prepared to have his face rubbed every day in the fact of the disease and the machine which have ruined his life, since he is much more intimately involved in the details of his medical tragedy when he has to do his own dialysis.  The difference for some people between home dialysis and in-center is like that between doing your own housework and having a professional maid do it for you: why would you want to do your own dialysis if professionals are available to take care of it for you, while all you have to do is show up at the dialysis center, sit down, and read for four hours?  There is also the added psychological stress of having the machine come into your own home, rather than being able to confine that horror at some place away from where you live.  The feeling that your life has been invaded and taken over by the disease discourages many people from this treatment, despite its better medical outcome.

The question asked was "Barriers to home dialysis"
Stauffenberg's post is valid. In it he mentions a number of barriers - logistical, financial (which may or may not be easily resolved), and, most importantly, psychological. Very simply, one who feels as Stauffenberg described is not a good candidate for home dialysis. This is not a value judgement. By remaining "in-center", this individual is best able to distance him/herself from ESRD. I absolutely understand that a person might feel that way.

That said, all of us - caregivers, those whose kidneys have failed them, family and friends, live in our own private little hells because of ESRD. Stauffenberg has described one hell and others have described their own. One does not invalidate the other (more in the caregivers section.)

Alene

[aharris2]

(more in the caregivers section.)

...or not. That thread has been locked

[kitkatz]

Now remember everyone opinions expressed on this board are just that, opinions.  Opinions are a dime a dozen.  Play friendly now.

[okarol]

This thread might be helpful to learn more about deciding on home hemo http://ihatedialysis.com/forum/index.php?topic=43.0

[Sluff]

(more in the caregivers section.)

...or not. That thread has been locked

Yup it sure was. I don't feel we need two threads to discuss one subject.

Sluff/ Admin

[Zach]

Some more thoughts:
 

http://www.nephronline.com/nephnews/index.php?option=com_content&task=view&id=2358&Itemid=136

Report from Orlando           
Symposium pushes the HHD button

Mark E. Neumann, Executive Editor, Nephrology News & Issues

Dialyzing at home was the only option in the 1960s if you wanted to survive. The bedrooms of households of the lucky few gave birth to a treatment that today helps more than 350,000 individuals.

One of the nephrologists who remembers those days—Christopher Blagg—was the main organizer behind a full-day symposium this past Saturday in Orlando, Fla. that focused on sending more people with renal disease back home. The objectives of the symposium, jointly sponsored by the Annual Dialysis Conference and the International Society for Hemodialysis, were to compare experiences with home hemodialysis in the United States to that of Finland and Australia, discuss strategies to develop or improve home hemodialysis programs, identify resources for HHD patients, and provide updates on ongoing studies and an international registry.

All told, 25 presentations were squeezed into the nearly 10-hour day, and the symposium’s official title, “The Renaissance of Home Hemodialysis: Lessons from the World Over,” aptly represented the discussion and review.

What was the take-home message? Primarily, we need to offer HHD to more patients in the United States. It is an option that needs to be presented—optimally, during the pre-dialysis period—along with peritoneal dialysis, transplant and in-center dialysis. And for some, there is a belief that it remains the best option.

“In the 1960s, when we did dialysis at home, we didn’t call it home dialysis,” said Nancy Spaeth, a Seattle native with a transplant who experienced a number of modalities. “We just called in dialysis.”

Certainly, HHD is not for everyone. The discussions during the day made it clear that home dialysis––whether short daily hemodialysis, nocturnal, standard HD at home three times/week, or PD—requires an individual who understands the rigors of self-care. But others suggested that patients may not need to make HHD a permanent decision. What makes more sense is that it becomes part of a life plan of therapeutic options, as needed. If short daily at home becomes overwhelming, switch to in-center nocturnal, or consider PD. A respite may help ease the workload, but still allow patients to maintain self-care.

The international perspectives at the symposium focused on the value of HHD and patient quality of life. And the good news from these programs in Finland and Australia is they also found cost savings. Ecro Honkanen, and MD from Finland, told the packed audience that the costs of HHD are the lowest among all therapies in his country––if you look long term. Those cost savings for their health care system come from patients who experience improvements in cardiac function, “dramatic” improvement in phosphorus control (particularly in patients who do nocturnal dialysis), reductions in blood pressure, and improved energy levels—which leads, Australian nephrologist John Agar said, to people returning to work in his country.

To get more patients interested in HHD, dialysis staff push a “home first” policy in Finland. Similar to experiences in Australia, patients want flexibility in treatment options.
Not all patients say yes, said Hankinson. There is some reluctance from patients about “hospitalizing” their home. Others show concern about the complicated equipment, self-needling, and the support of a partner. Insomnia is also a problem in about 40% of patients who are on nocturnal, even after three months. But the Finnish nephrologist said the patients dialyzing at home “will not give it up.”

In the United States, home hemodialysis is experiencing a renaissance. Obstacles remain: patients are not always offered the therapy, particularly in rural communities where it makes the most sense. And the issue of reimbursement remains a sticking point. Renal providers need to see Medciare’s willingness to pay for more frequent dialysis as private health care plans now do. The recent push to bundle dialysis payments may not bode well for more expensive therapy like short daily or nocturnal treatments. Will government see the long-term value and pay for “outlier” treatments like home therapy?

Let’s apply the “lessons from the world over” and give home hemodialysis the rebirth it deserves.

For more information on the Annual Dialysis Conference, taking place March 1-4 in Orlando, visit http://som.missouri.edu/dialysis.

[plugger]

If you can stand another thread, I did start the same discussion at:
http://forums.homedialysis.org/forumdisplay.php?f=10

More the merrier I say!

[petey]

Good thoughts on that other thread, Plugger!  I think it all boils down to what one person there said, "Knowledge is POWER."

[Psim]

They will not work with me for that time frame. It has to be in their time frame. How convenient is that for me?

This makes me fume, kitkatz. I'm sure there are others who would be able to train in the summer. How I love bureaucracy! 

[okarol]

Some more thoughts:
 

http://www.nephronline.com/nephnews/index.php?option=com_content&task=view&id=2358&Itemid=136

Report from Orlando           
Symposium pushes the HHD button

Mark E. Neumann, Executive Editor, Nephrology News & Issues....

Also in the news articles section 

[plugger]

A lot of great info!  I just wanted to mention if you are tired of reading, here are some great videos - classic:

http://www.lynchburgnephrology.com/index.php?pmenu=NHHD&info=/Videos.php&p=&tmenu=Left

[Zach]

Also in the news articles section 

Opps!  Sorry about that.
 

[okarol]

Also in the news articles section 

Opps!  Sorry about that.
 

That's okay Zach  You can do no wrong in my book!
Epoman created the news section so I would stop randomly posting news stories all over the forum.

[petey]

I think that Epoman was a smart dude, Karol!  But...maybe instead of calling it the "News Article Section," he should have named it "Karol's stuff."     That's the first place I go when I log on to this site, Karol!  Without you, I'd be uninformed and in the dark.  Thanks for all you do!

[plugger]

Good thoughts on that other thread, Plugger!  I think it all boils down to what one person there said, "Knowledge is POWER."

Thanks Petey!  I think we have to create the demand.  I'm thinking of trying for roadshows, I'm hearing about DVDs that might already be out there, followed by tradeshows from the various manufacturers of home dialysis equipment - might have to see a demand first.