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.
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.
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.
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.
I will not take six weeks off of work to train for dialysis. This is a ridiculous expectation on their part!
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.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.
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.
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 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.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. :cuddle;
I know this post if off topic. Most of this belongs in the "caregivers" section.
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.
(more in the caregivers section.)
(more in the caregivers section.)
...or not. That thread has been locked :-\
They will not work with me for that time frame. It has to be in their time frame. How convenient is that for me?
Some more thoughts:
8)
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 :waving;
Also in the news articles section :waving;
Opps! Sorry about that.
8)
Good thoughts on that other thread, Plugger! I think it all boils down to what one person there said, "Knowledge is POWER."
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." :rofl; 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!
That's okay Zach :-* You can do no wrong in my book!
When you give people the alternative between death and accepting anything else, the fact that they generally choose the alternative can hardly be cited as evidence for how positive that alternative is! So the fact that 80% of patients continue to find dialysis preferable to suicide hardly means that dialysis is something to be grateful for, but instead just shows how difficult it is -- because of blind, irrational, instinctive forces compelling us to keep living however hideous our lives may be -- deliberately to choose death as an escape.
Stauffenberg, my husbands life, as well as a lot of other people's lives, is NOT hideous!!! I really don't like you suggesting that it is. If everybody had your opinion there would be very few people in this world!!! The world seems to be a much better place when we focus on the good things instead of always trying to down everything!! Maybe you should try looking on the positive side of life. Just a suggestion.
I believe that potential home dialysis patients should speak the truth about how they feel about being hooked up to a machine that invades their home and forces them 'to build their own scaffold' rather than allowing them to sit back, relax, and let a professional do the job. If their negative feelings discourage some dialysis providers from offering more home dialysis, then the supply will have simply matched the demand.
Look for the middle ground, we are sick, but we are surviving by any means possible. For me, and others that is home hemo. It is a positive and beneficial therapy. I am also on the UNOS list, and I have had newspaper articles done about my home hemo experience, and I'll have a reporter following my transplant as it happens. I expect highs and lows, just don't take them out of context to advance your biased point. I know that you are the voice for those who just can't handle home hemo, and for those who are suffering on dialysis - but you are no longer walking in their shoes. Give them some credit that they can have good days too.
I guess, Bertolt Brecht was right:
Der Mensch ist gar nicht gut, d’rum hau ihn auf den Hut
hast du ihn auf den Hut gehaut, dann wird er vielleicht gut.
Denn für dieses Leben ist der Mensch nicht gut genug
darum hau ihn eben ruhig auf den Hut.
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Another line from Brecht's 'Dreigroschenoper' I remember from that song might also be appropriate to this discussion: "Der Mensch ist gar nicht gluecklich."
Hallo Jbeany: Deine Uebersetzung ist genau richtig! Du hast ja offenbar die Zeit beim Abiturstudium nicht vergeudet.
life in intolerable circumstances
Suicide may be your decision Stauffenberg and I feel sorry for you and when you go you will soon be forgotten. But, there are too many of us that look at life differently. I do not know the next step but I do have a faith and a trust to take each day as they come. I cannot change tomorrow but I can change the way I look at it and I appreciate the positive comments that I read from so many people. The majority wins and in this case and with this group we have chosen life !!!
flip, the trick to a one-handed pull is attaching a syringe to the end of the cannulation needle. It gives you enough length to be able to pull the needle out with the fistula hand, while holding a gauze pad with the other.
It was the attitude of the Ancient Stoics that nothing in the objective world is good or bad, but it all depends on whether you want to see it as good or bad.
One of the Stoics, Epictetus, had his arm broken and purportedly was not bothered by the experience, since he had decided he would not let it bother him. I think there are limits to how far you can take that attitude and still claim to be objectively present in your life, rather than living in the delusional fantasies of a psychotic.
On the one hand you say that Marvin is perpetually an ESRD patient whether he is doing dialysis or not, but then on the other hand you say that you own ESRD. I don't know how you can be sure that such an enormous intrusion, that is part of your life all the time as you say, is not owning you rather than the other way around.
It was the practice in the days when people were beheaded for capital offenses to hide the executioner's axe under straw so the person about to be decapitated did not have to see it and be further horrified just before dying. The person knew he was about to die, but actually seeing the instrument of death so near could still be disturbing. I feel the same way about home hemodialysis. Even though I was aware every moment of being an ESRD patient as you say Marvin is, I still preferred not to have to see its principal manifestation right in front of my face all the time.
I think the most appropriate Greek God to symbolize the dialysis experience is not Hercules but Prometheus, who was chained to a rock forever, having to endure the intermittent but never ending visits of an eagle who would eat his exposed liver.
Oh, Geeze! I cant take this shit anymore. Not everyone is like you DEAL WITH IT!
It is bizarre how everyone jumps to the totally unsubstantiated conclusion that I was ever at any time saying that MY experience with home hemodialysis somehow HAD to be everyone else's. Show me where I ever said that! I simply said that in considering the costs and benefits of home hemodialysis, the potentially negative psychological factors, which I noted in my own experience of home hemodialysis, should be weighed in the balance against the undoubted health benefits of that option. Until you try it for yourself, you can't know how you will react, so you have to consider the possibility that your reaction will be like mine. For me the psychological costs outweighed the benefits, for others the balance could well be different. I also don't see how my discussion of my own psychological barriers to home hemodialysis were somehow, as many have asserted, "off topic" for a discussion entitled "barriers to home dialysis."
It is bizarre ...
Monrein raises a good point about home hemodialysis, which is the added burden this places on the helper, who is usually the spouse. If you accept that there is some moral duty to try to contain the impact of a tragedy like renal failure, you also have to question whether this additional extension of that tragedy to your home dialysis helper is something you can live with. Almost everyone I knew at my dialysis unit who was doing home dialysis had a helper who was either not employed or was employed only part-time. But since my helper, my wife, was the head of a major federal government department, she had to be at work every day from 8 AM to 7:30 PM, and having to help with home dialysis on top of that seemed to me to be a cruel burden to impose on her, since the added work left her totally exhausted.
I have been talking to people who are good candidates for Home hemo in my center. And one guy was complaining about having to stick himself. I said- "Are you still able to have sex with your wife?" He said no, and I told him that his chances of regaining his ability to maintain erection would go up dramatically if he did home hemo, especially extended therapy. When faced with that trade off he was encouraged to get over his fear of self cannulation.
I also want to take my other health problems into consideration when choosing, so that I can live as long as possible, and feel the best that anyone can on dialysis.
Del, Petey, W&W, you are all warriors in what you do everyday. :2thumbsup; Having done it myself, I just don't know if I can ask my husband to do it until I die.