Moosemom, the sentiments you are expressing are exactly what I keep trying to share with as many nurses, dietitians, social workers, and techs as I can (if I could get to docs, too, I would). I’ve been listening to them for 23 years now from thousands of folks, and, while I don’t have kidney disease, I’ve had other health scares that have given me a sense of how absolutely terrifying it can be to find out that your kidneys are failing, and how completely horrifying it is when a medical professional tries to take control away from you. I can imagine, because I’ve been there. Not half an hour ago, I got off the phone from yet another presentation trying to explain this to folks who can DO something about it if they believe me. And, they DO believe me–because of folks like YOU sharing your feelings so eloquently.
Unfortunately, that is all too often the case.
Dori, with SO many people involved in the business/delivery of dialysis, you’d think that at least a fair minority of them would have experience with chronic disease. Maybe they themselves have a malady that can’t be cured but can be managed, or perhaps they have a friend/family member who has a chronic illness. Or, like you, maybe they have had a health scare that set their imaginations down a dark path. Surely these people have a modicum of empathy. But then again when healthcare becomes a job (and not necessarily a high paying one), I can see how the pressures might extinguish that particular quality.
One thing that bothers me about NDXUFAN’s post is this idea of having established a good working relationship over the years with your neph, only to finally need to go on dialysis and then be “handed over” to staff that knows nothing about you. You’re back at, ahem, “square one”. That relationship your neph based on mutual respect is suddenly limited if not gone altogether because the neph is no longer really at the heart of your care on a day to day basis. I remember seeing my mom’s lab results from her dialysis clinic one day…it had little smilies indicating a good potassium level and little frownies indication above normal phosphorus. What was this, kindergarten? My mom didn’t seem to care, but it that had been me, I’d have been none too pleased. Anyway, my point is that it seems that good relationships with your neph don’t always carry over to the dialysis staff, and that can be really frustrating.
I have been sitting back lurking in the back ground biding my tongue on what I see as some troublesome comments by NCXUFAN openly stating that he is fabricating his medical records. As a physician who utilized patient self care diaries to make clinical decisions, it is troubling to understand patients fabrication and to openly defend that practice in a self serving justification.
As a long standing dialysis patient advocate, this type of behaviour is exactly the accusations against us that patients cannot be trusted to do self care and is used in many centers to justify loss of patient autonomy in the dialysis unit. In such, I cannot support defending this type of behaviour by any patient or that matter staff person. It is actually easier to revoke a physicians or other health care license for fabrication of medical records than it is for negligent care.
Although there is no license for self care at home dialysis, the must be a sense of trust in the relationship between staff and patient for this system to work. I am not in the least condoning unprofessional behaviour in the dialysis unit amongst staff which is readily documented in many blogs and publications, yet I will not for one minute support any patient that endangers the entire home dialysis process with this unethical and dangerous tactic.
It is grounds for dismissal from the dialysis unit and as a physician, if I had such a patient I would immediately end my relationship with that patient and require them to seek another provider.
As far as how “terrible” dialysis is, that is a two fold issue. In-center conventional care has many inherent dangers related to the fact that time is money to the dialysis center and the less they give the patient, the more money they make. Thus, short dialysis time and high ultrafiltration rates and poor hand hygiene account for the majority of the “usual” dialysis related complications.
On the other hand, daily at home hemodialysis done with a competent patient with or without a care partner is not in the least “horrible.” I am getting ready to eat my meal with a stack of potatoes and tomatoes for my potassium infusion with the 1K NxStage dialysate. Daily dialysis liberates the diet greatly. Daily dialysis ameliorates the uremic and dialysis un-physiology symptoms. I would hope that we would stand up against unfair and illegal patient actions just as we would against staff actions that are potentially harmful. Anyone that is going to fabricate medical records should not have any further access to home dialysis as it endangers all of us on home dialysis.
Just my opinion.
Hey there, Peter! I’ve been checking your blog for new posts for quite some time, so get to it!!
I think I understand the motivation behind NDXUFans’s fabrications, but that doesn’t mean I condone it. If the fabrications are going to stop, then the reason behind it has to be addressed or at the very least, recognized. Maybe his neph will just expel him like you suggest, but since they’ve had a relationship lasting 10 years, I would hope it wouldn’t come to that.
I would also hope that a clinic wouldn’t sabotage my access to treatment just because of one patient’s recalcitrance. That’s blatantly unfair and as long as I am holding up my end of the deal, it seems that it would be medically unethical for any clinic to deny me optimal dialysis just because of another patient’s bad behaviour. I would think this would be a knee-jerk reaction to end all knee-jerk reactions, and it would reinforce my suspicion that no one in the business of providing dialysis has the patients’ wellbeing as their first priority.
I don’t remember the last time I had a baked potato.
I don’t care how you spin it, dialysis is horrible. Some modalities are just more horrible than others. I’d be happy never to have a potato or a tomato ever again if it meant I didn’t ever have to begin dialysis. I’d also gladly throw in Coca-cola and chocolate on that list, too, if that would be a good enough bribe to keep me off D.
[QUOTE=PeterLairdMD;20827]I have been sitting back lurking in the back ground biding my tongue on what I see as some troublesome comments by NCXUFAN openly stating that he is fabricating his medical records. As a physician who utilized patient self care diaries to make clinical decisions, it is troubling to understand patients fabrication and to openly defend that practice in a self serving justification.
As a long standing dialysis patient advocate, this type of behaviour is exactly the accusations against us that patients cannot be trusted to do self care and is used in many centers to justify loss of patient autonomy in the dialysis unit. In such, I cannot support defending this type of behaviour by any patient or that matter staff person. It is actually easier to revoke a physicians or other health care license for fabrication of medical records than it is for negligent care.
Although there is no license for self care at home dialysis, the must be a sense of trust in the relationship between staff and patient for this system to work. I am not in the least condoning unprofessional behaviour in the dialysis unit amongst staff which is readily documented in many blogs and publications, yet I will not for one minute support any patient that endangers the entire home dialysis process with this unethical and dangerous tactic.
It is grounds for dismissal from the dialysis unit and as a physician, if I had such a patient I would immediately end my relationship with that patient and require them to seek another provider.
As far as how “terrible” dialysis is, that is a two fold issue. In-center conventional care has many inherent dangers related to the fact that time is money to the dialysis center and the less they give the patient, the more money they make. Thus, short dialysis time and high ultrafiltration rates and poor hand hygiene account for the majority of the “usual” dialysis related complications.
On the other hand, daily at home hemodialysis done with a competent patient with or without a care partner is not in the least “horrible.” I am getting ready to eat my meal with a stack of potatoes and tomatoes for my potassium infusion with the 1K NxStage dialysate. Daily dialysis liberates the diet greatly. Daily dialysis ameliorates the uremic and dialysis un-physiology symptoms. I would hope that we would stand up against unfair and illegal patient actions just as we would against staff actions that are potentially harmful. Anyone that is going to fabricate medical records should not have any further access to home dialysis as it endangers all of us on home dialysis.
Just my opinion.[/QUOTE]
How long would you stay with any provider of medical supplies if they did not deliver as they had promised? How long would you stay with any provider who made promises they did not keep and that greatly affected your health? Individuals in the dialysis industry cannot accept the fact that they are not God, Jesus, or the Holy Spirit. How long would you tolerate individuals in your practice that talked to you like a parent-child relationship? How long would you stay with a provider who made you work harder because of the faults of other people? How long would you stay with provider who tried to control your life each and every day, every single step of the way? How long would you stay with individuals who had a God like mentality? These individuals say you should follow the Nephrologist’s orders. Yet, if he would give the order for a Heparin pump, they said they would not obey the order, are the orders just for me or me and you? You stated that we should both follow orders, is that true? Why is it that I should follow orders and you should not? However, that is not what you said. I will never follow any order from anyone that will ruin my health, ever, either should anyone else. I know my body more than anyone. Would you follow an order than would negatively impact your health? Orders must not be immoral, if an order is immoral, that order may be disregarded. You are also not privy to all of the other things that have been done by this group that is arrogant and bullying. Many people want to leave DaVita and go to Liberty, why do you think that would be??? When I first came to this provider, I told them what I wanted, Nocturnal Dialysis and they said Nocturnal Dialysis with NxStage would be here in around six months, ok, not a problem. Yet, it is 4 and half years later, and they have not kept their promises. In the real world, when a provider does not come thru on promises, they are fired. After some of your posts, do you think that the dialysis industry can be trust to give enough dialysis to In-Center patients, I highly think not. With the track record of these people, I would not trust them to be the county dog-catcher. In any other field in this economy, these people’s jobs and employment would be eliminated. I was told by a physician with my Nephrologist that if they were on dialysis, they would run on the machine as much and as long as they could, but, we should accept less? So, there is one standard for me and one for you??? That really sounds familar from other place and time, does it not? So, you believe second class treatment for us is acceptable? I guess you were not around for the civil rights movement, because Jim Crow was immoral and what these people are doing is also immoral. I will be treated as an adult and this will be an adult-adult partnership, not a parent to child partnership, if you dislike this, it is sorry about your luck, Chuck. Over the 4 and half years, I have been in that clinic, I have brought in $600,000.00 in revenues to that clinic. Individuals in a retirement community pay 1/3 of that amount and they are treated like royalty. When the provider nurse came to my house for a home visit, instead of asking me to look in my refrig, he just started looking thru it, that is a criminal violation, and I could have had him thrown in jail. Even with criminals on probation, the probation officer will ask to look in the refrig, he or she does not just start looking through it. The basic attitude of the dialysis industry is that they are God and we are their children. Who in the name of God, died and left them as boss? Any physician that does not protect their consumer, client, or patient against these people and their paternal attitudes, does not deserve that title. The patient needs to use anything that they can to protect themselves if the physician does or will not. If anyone can not be trusted to do the right thing, it is the dialysis industry, their record for caring for people is absolutely pathetic. Under your line of thinking, the innocent citizen(patient) should not use a firearm to defend against the merry band of thugs(dialysis industry) breaking into their house. What would you say I should do to make things better every patient and keep their feet to the fire? What say you?
I agree with you on the partner issues, as stated by Dr. Agar, it is unnecessary. Why the world should someone else have to assume a full-time job as a partner, it is tiring and exhausting, did they ask for this life, no, they did not. I fail to see why they should do the job that should be done by the provider. We work like slaves and they collect money. What is more important a few pieces of paper or the health of the consumer and or patient? Again, what say you? Dialysis is horrible, anything thing else is a line of bull. I have known my nephrologist for 10 years and have always told him the truth and I know and think the world of him. I hate to tell you that respect is earned, as he earned it from me, those people have done nothing to earn my respect, just a bunch of abusers and bullies. Anyone can be a bully, does not take much skill to be one. So, you would protect the clinic over the consumer, that is not right. I thought in your opinion the dialysis clinic had too much power, is that not true? Yet, when the poor dialysis consumer fights back in just about the only way they can, you want to toss them out of the clinic? I wish you would not be an apologist for the clinic and their dishonest actions. I am just not going to submit to what these people want to do to me, it is my health and my life, not theirs. Their lives are easy lives without alot of trouble or concern. I hate to inform you, I will never, ever respect an abuser or a bully. I just tell you what they do, you can think however you want. By the way, the next time someone who you employ talks to you in the manner that those people talk to me, tell me how long you still employed them?
Peter… You always have a way with words… I am your biggest fan… I agree…
[QUOTE=MooseMom;20828]Hey there, Peter! I’ve been checking your blog for new posts for quite some time, so get to it!!
I think I understand the motivation behind NDXUFans’s fabrications, but that doesn’t mean I condone it. If the fabrications are going to stop, then the reason behind it has to be addressed or at the very least, recognized. Maybe his neph will just expel him like you suggest, but since they’ve had a relationship lasting 10 years, I would hope it wouldn’t come to that.
I would also hope that a clinic wouldn’t sabotage my access to treatment just because of one patient’s recalcitrance. That’s blatantly unfair and as long as I am holding up my end of the deal, it seems that it would be medically unethical for any clinic to deny me optimal dialysis just because of another patient’s bad behaviour. I would think this would be a knee-jerk reaction to end all knee-jerk reactions, and it would reinforce my suspicion that no one in the business of providing dialysis has the patients’ wellbeing as their first priority.
I don’t remember the last time I had a baked potato.
I don’t care how you spin it, dialysis is horrible. Some modalities are just more horrible than others. I’d be happy never to have a potato or a tomato ever again if it meant I didn’t ever have to begin dialysis. I’d also gladly throw in Coca-cola and chocolate on that list, too, if that would be a good enough bribe to keep me off D.[/QUOTE]
Dear Moosemom, we are in a great battle waged for nearly 50 years to bring optimal dialysis to America. In such, many have dedicated their life to serving the dialysis population. Many have not and serve only their own dreadful monetary pursuits through our pain and suffering. Yet, through all this, the gains we have made are substantial in the last few years, but much more is needed. In such, anyone that would not take the privilege of home dialysis seriously may damage the entire cause. We seek more self care freedom, not less, fabricating medical records would only give reason to further limit our self care at home.
I would only add that pre-ESRD and the severe limitations of diet actually is lessened once a person starts dialysis and can remove the PO4, K, Na by dialysis. Many on home hemo have very liberal diets. After 4 years of dialysis, I just cannot describe dialysis as horrible. Not fun, a pain in the neck, a pain in the arm literally, but horrible? No, I have even grown fond of my little, portable NxStage machine. Do I simply LOVE my dialysis off days, you bet, but the days I do dialysis to date have never once been “horrible.” (Wait a minute, on vacation at a unit I will NEVER go back to, I had a severe headache even before I got home, OK, that day was HORRIBLE)
I suspect once you get good at doing dialysis yourself and over come the natural anxiety we all have before starting dialysis that you hopefully will be able to say the same. BUt the number of good days dialysis has given me precludes using the terms of horrible. I wish you the best in seeking and obtaining optimal renal replacement treatment however it is that you will define that for yourself.
God bless,
Peter
Good Points… NDXUfan12…
Excellent, Moose Mom, you understand, unlike some individuals who want to apologize for the actions of these people. I think what these people are doing to Moose Mom is bordering on criminal. Again, I am posting what happened, I am posting about their actions, it is what THEY did. I want everyone to have the choice of Extended treatments on NxStage, if they do not want them, fine, that is their choice. I do not understand why people apologize when the clinic lies. I am saying these things because they are true and this industry does not have the well-being of the patient at the core of their values, quite the opposite. What right do these people have to deny you a baked potato? Maybe if they did their jobs and provided the dialysis you needed, it would not be an issue. I wonder how the apologists on this board for the dialysis industry would feel if these people were acting this way towards their husband, wife, children, or relatives, I know they would be singing a different tune. The dialysis industry is an incredible racket. By the way, this is how many people on dialysis view the industry, the speaker is the dialysis industry and the crowd is the people on dialysis.
I don’t agree that explaining is the same thing as apologizing, NDXUFan 12. I think it’s wrong not to offer a superior treatment because of legal concerns, when it seems to be just fine to offer <3 hour 3x/week treatments when we KNOW, based on data, that there is a 50% increased risk of death from heart problems on the day after the 2-day treatment gap. If folks would sue for deaths from standard dialysis, we might just get somewhere. Drs. Lacson and Lazarus from Fresenius just wrote an article that says treatment times should be longer–and we couldn’t agree more.
Curr Opin Nephrol Hypertens. 2011 Mar;20(2):189-94.
Dialysis time: does it matter? A reappraisal of existing literature.
Lacson E Jr, Lazarus M.
Fresenius Medical Care North America, Waltham, Massachusetts, USA.
Abstract
PURPOSE OF REVIEW: The length of time (Td) required for adequate maintenance hemodialysis therapy is perceived as a substantial patient burden. Technological advancements have allowed shortening Td over the past three decades. However, failure to detect improved outcomes with higher dialysis dose has prompted renewed interest in the potential impact of longer Td.
RECENT FINDINGS: Ongoing trials are focused on increasing the frequency of treatments, although the feasibility of having most patients agreeing to more than five treatments per week remain doubtful. Furthermore, survival was better in short daily hemodialysis with Td of 180 vs. 90 min. Within thrice weekly dialysis, several recent epidemiological studies have shown improved survival associated with Td more than 4 h. Improved outcomes for long in-center nocturnal hemodialysis (6-8 h, 3×/week), similar to what has been performed in Tassin for the last 30 years, have also been reported.
SUMMARY: Compelling rationale and recent outcome data support use of longer Td. Improved management of salt and water may be the cause for the dissociation of dialysis time and small molecule clearance. In most industrialized countries, hemodialysis care systems in place have the capacity to accommodate it. Until such time that results from prospective randomized trials are available, we believe that physicians should prescribe and exert all efforts to convince thrice weekly hemodialysis patients to accept 4 h as minimum Td.
NDXUFan, I am afraid I’ve been misunderstood. I am not on D yet but will be sooner rather than later, but I am feeling your frustration. I think we patients can sense when we are being well looked after and cared for as opposed to being nannied and pushed around because that’s easier for the staff. It would be easy for me to sit here and type how I won’t ever let myself be dictated to at a clinic, that I won’t let myself be denied anything, but when push comes to shove, well, let’s hope there won’t be any pushing and shoving. As they say in England, they have you by the “short and curlies” when you are trying to get optimal dialysis for yourself but are having to overcome obstacles put there by the very people who are supposed to be helping you.
Dori, it is funny that you should mention suing for optimal dialysis because just the other evening over dinner, my husband and I were discussing that very thing. He is an attorney and I probably was, too, in a previous life. There is a member on IHD who had worked with her clinic and her neph for well over a year to do extended with NxStage. But lo and behold, Davita is buying her clinic, and there’s a concern about whether or not they will allow her to do extended once the purchase is complete. My question was whether or not it is negligent to replace optimal care with less than optimal care, ie, deny her a treatment THAT HAD ALREADY BEEN APPROVED BY HER NEPHROLOGIST for no reason based in clinical research.
Peter, I know, I know…in Peterworld, dialysis is not horrible for all the valid reasons you state. And I damn well hope that you are right, that once I am forced to cross the Rubicon and start D, I will discover for myself that it’s not so bad and that life goes on. But the Rubicon is SO WIDE…I fear the pain, illness, suffering, fear and sheer mental exhaustion that I sense will have to first be conquered before I can join you in Peterworld. MooseMom world is a scary place right now! There are no potatoes here!
To impose blanket conclusions a priori is not medicine but dogmatism, and to impose them on others is not education but intimidation, violationg the very “mutual respect” that is supposedly being promoted.
I think the world of Nephrologist and that is why I have not left DaVita. My Nephrologist cares about people on Medicare and private insurance, equally. Quite honestly, I do not think he has even thought about it. I have been threatened by places that are much larger than DaVita, so not even afraid. The power of private companies are quite limited compared to the government. This is why I so strongly oppose government control and tyranny. I pushed these people for optimal dialysis, for four and half years, they did not want to listen. So, I used the only thing that would make them listen. This is not just for me, it is for all of the other souls that want to do Extended treatments on NxStage who are too afraid to challenge some of these clowns. Many of these people need Extended treatments, they are very sick and old, and they need some to help them. If it takes me getting booted, that is life. If I could, I would go to very single retirement home and put these folks on NxStage and take them off, however, I am only one person. I have the energy and drive to confront these people head on. We are judged by how we treat the least among us. I would even go to the retirement community and put Peter on and take him off, if he was too sick. I do not believe we should throw the elderly on dialysis in a garbage can. Many of the elderly do not need torture of In-Center dialysis, they need home dialysis. I would protect anyone of you from some of these idiots. I am not old and sick, I am 43 years old, and if I have to raise some HE!! to protect the elderly on dialysis, I am doing to do it. I have almost been dead three times and I am still here. They could easily kill those old folks, but, getting rid of me is going to be a much, much harder task. If they get a staph infection, they might die, I will be out of the hospital in 3-5 days at the latest, ready to cause more chaos. My hero, Martin Luther King, did many things that were against the law or what the legal code of the South was in those days, and I am extremely happy that he did, Jim Crow, as the current dialysis regime is immoral. It was illegal to hide members of the Jewish faith against Nazi prosecution, would you leave them to die? So, the Nuremberg Codes against members of the Jewish faith were correct? I violently disagree.
[QUOTE=MooseMom;20835]
Peter, I know, I know…in Peterworld, dialysis is not horrible for all the valid reasons you state. And I damn well hope that you are right, that once I am forced to cross the Rubicon and start D, I will discover for myself that it’s not so bad and that life goes on. But the Rubicon is SO WIDE…I fear the pain, illness, suffering, fear and sheer mental exhaustion that I sense will have to first be conquered before I can join you in Peterworld. MooseMom world is a scary place right now! There are no potatoes here![/QUOTE]
Not sure that is simply my experience since I have spoken to quite a few dialyzors over the last few years. The apprehension of dialysis is quite real and all of us have gone through that. The complications and daily expectations of dialysis are quite real, but to date, with very rare exceptions, I just can’t characterize dialysis as horrible. There really is life on the other side of dialysis, definitely different, but without dialysis, there would be no life to complain about.
Hang in there Moosemom, we have all been there and I didn’t relish the idea of dialysis any more than you are at present.
God bless,
Peter
So Peter, I really don’t mean to intrude, but how did you feel when you first realized that dialysis was in your future? What was your biggest psychological struggle? How did you overcome that? Was it simply a matter of telling yourself, “This is what I have to do to stay alive, so this is what I will do…it’s that simple.”?
Dear Moosemom, the biggest shock was learning in 1998 that I had renal disease in the first place and the uncertainty of what was causing the protein and blood in the urine. There are many things that can cause this. i was somewhat relieved to find out it was not a tumor or Lupus, it was IgA nephropathy which in many cases does NOT progress to ESRD. Unfortunately, that is not the case in 40% of cases as was mine.
It was not until my creatinine bumped up to 1.5 a few years later that I knew deep down it would not end well for my kidneys. Since there was little to do other than to take my ACE Inh, I did my blood work about once a year and watched it go in the next two years from 1.5 to 1.7 then to 2.1 in 2005. When it went to 2.1 the writing was on the wall and it was simply a matter of beginning to deal with it in real life. Until that time, nothing had changed for me personally. In 2005, i began to feel the effects of renal disease and I stopped working in the hospital doing over night call Labor Day weekend, 2005.
That was something I did not want to ever give up since I chose Internal Medicine because I loved working with critically ill patients, I have never enjoyed the paper pushing entailed in office practice, but with the intermittent nature of hospital work, I still stayed fresh and oince again greatly enjoyed the work, but in reality, I could no longer tolerate the 24 hour plus work day of hospital work any longer.
From that point, I learned as much as I could and I was the one that plotted my transition as far as scheduling my fistula and other issues. The most difficult issue for me was the full time work and LITTLE support from my immediate supervisor. I will forgo the details, but by the time I actually started dialysis, it truly was needed as I felt TERRIBLE and immediately, I felt better in many ways as I adjusted to this new reality.
Part of my transition was eased by continued residual renal function that I still enjoy today with no fluid restrictions at all to date. I have already started my 5th year of dialysis and I still only take off 0.3 L every dialysis session, that is all. I do a rinse back with 500+ ml of saline that lets me reduce my dialysis blood loss, in such I do not use EPO with all of its many side effects potential. In short, by the time I started dialysis, I truly needed the relief from my uremic symptoms.
I think in my case it is kind of like the fear a woman has to deliver her child that by the time she has carried this large “parasite” in the middle of the belly for nine months, the delivery is actually a welcome event, even though it is still anxiety provoking. I would venture to state that I doubt seriously that your first dialysis session whenever that shall be will not be anywhere as traumatic as your children’s birth was. The issues with dialysis for a well controlled dialysis patient are more a matter of the time constraints and the rearrangement of your life to accommodate the unit’s schedule and the loss of control over your life in those regards.
The actual dialysis process OTHER than getting used the 2 seconds of burning pain in the arm with the cannulation is reasonably benign IF you do not have to take off much fluid. Sodium restriction is not only a survival strategy, but it also helps reduce the noted side effects of dialysis from overt fluid removal. Controlling sodium intake WILL keep the total fluid gains between dialysis to a minimum and greatly reduce adverse symptoms.
So, to get back to your question, I had quite a bit of time to deal with the aspect of dialysis and its slow burn onto dialysis unlike many folks that go to the doctor and then to the dialysis unit all in one day as I have heard from quite a few folks. That would be shocking and difficult to deal with indeed.
I would hope you can appreciate the fact it is the renal disease, not optimal dialysis that is our real enemy.
Every dialysis patient has a different story, a different experience that is shaped by so many factors ranging from RRF to the personality of the patient himself. I understand that being educated takes you far, but it takes you only so far. I can only hope that my efforts to achieve optimal dialysis will result in less physical trauma.
Thank you for your thoughts on your own experience. It must have been difficult to give up your work. I know you do great things in the advocacy realm (I heard you were outstanding in Phoenix!); does this make up for what you were forced to give up?
I do understand that it is renal disease that is the enemy, not OPTIMAL dialysis. It’s the struggle to GET optimal dialysis that should be so unnecessary!
I don’t think dialysis is “horrible” at all. I am grateful that I had a choice to choose it and stay alive for my then 8-yr-old son. The other choice would have been death. I dialyze while I sleep. I have my whole day. I just got back from the gym. Too see me, you’d never know I was “on dialysis”. I LIVE my life because of dialysis. It’s not painful. I don’t find it unpleasant. It affects my life in a positive way. I don’t like the look of a fistula but I’m used to that and the ones who love me don’t even notice it any more. There is nothing ‘horrible’ about it for me. I suppose if I started to have all sorts of problems related to dialysis, then I might have a different opinion. If I was still in-center there would certainly be more negative aspects to it. I hated being in center but never thought the dialysis was horrible - I thought the environment was horrible plus the fact that I wanted MORE dialysis than I got there.
Anyway, just a different perspective.
By the way, one of the FIRST REQUIREMENTS of home dialysis is PATIENT COMPLIANCE. If a patient is incapable OR unwilling to be compliant, they don’t qualifiy for home dialysis.
[QUOTE=Wendy Ramsay;20845]I don’t think dialysis is “horrible” at all. I am grateful that I had a choice to choose it and stay alive for my then 8-yr-old son. The other choice would have been death. I dialyze while I sleep. I have my whole day. I just got back from the gym. Too see me, you’d never know I was “on dialysis”. I LIVE my life because of dialysis. It’s not painful. I don’t find it unpleasant. It affects my life in a positive way. I don’t like the look of a fistula but I’m used to that and the ones who love me don’t even notice it any more. There is nothing ‘horrible’ about it for me. I suppose if I started to have all sorts of problems related to dialysis, then I might have a different opinion. If I was still in-center there would certainly be more negative aspects to it. I hated being in center but never thought the dialysis was horrible - I thought the environment was horrible plus the fact that I wanted MORE dialysis than I got there.
Anyway, just a different perspective.
By the way, one of the FIRST REQUIREMENTS of home dialysis is PATIENT COMPLIANCE. If a patient is incapable OR unwilling to be compliant, they don’t qualifiy for home dialysis.[/QUOTE]
So Wendy, you do nocturnal dialysis at home? Which machine do you use? Did your clinic ever give you any faff about the FDA not approving your machine for nocturnal home hemo? Or did you broker it using the word “extended” instead of “nocturnal”?