I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: MooseMom on April 21, 2012, 03:55:07 PM
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How would you describe your quality of life on dialysis? There are all kinds of numbers that measure this and that, but there's no real measure for quality of life. How would you define it for yourself? I know that life on D isn't as "good" as life without having to have D, but does D enable you to do the things you want to do? Or do you feel that dialysis itself has disabled you more than, well, ENabled you?
Does your neph or anyone at your clinic ever ask you about your quality of life? Or is this a side of treatment that you feel goes entirely unnoticed?
Thanks for your replies.
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Okay, I had an answer for you. Then my kitten stepped on the key board. Here we go again. (She's now standing on the printer and just pressed the copy button.)
I think a lot of this depends on what you liked to do before D. If camping and hiking for a couple of miles of day is your ideal way to spend a week, then going on D is going to be harder for you. If you travel far from home a lot, that's going to be a lot more complicated too. If you are a foodie, and you spend all your free time involved in wine tastings and preparing and eating gourmet dinners, the diet and fluid restrictions are going to put a crimp in your dining habits.
My two favorite hobbies are reading and crafts. D didn't change that much at all, although setting up at craft shows got a bit more complicated. I read even more than before when I was doing in-center D, since I never could sleep well at the center.
In center is a huge time suck. Doing it a home was a lot better for me because I could schedule it around my life, not the other way around.
My social worker asked all the questions about coping with changes and quality of life, not my neph.
I sometimes felt like D was simply enabling me to stay in a stationary position, waiting for the transplant to change things for the better.
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Quality of life for me on Dialysis is difficult to measure. On my good days, I am thankful, and grateful and count my blessings, but on those horrible days, I really sulk and yes, feel sorry for myself. I am one of the ones who feel horrible after Dialysis and I mean horrible, I don't feel normal until the next day. I have dealt with hair loss, and anemia, so this has affected my quality of life. The only good thing has been making wonderful friends at the center, these are people I never would have met if it weren't for Dialysis and this has improved my life alot. :flower; Overall, I do hate this disease, but it's what I have been given so I'll try to get by the best I can...By the way, my neph has never talked to me about my life,but my social worker always listens and seems to really care.
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At my center, there's an annual questionnaire (the KDQOL - Kidney Disease Quality of Life survery) that gets scored and compared to your previous questionnaires to see what your quality of life is and how you're dealing with everything. It gives you scores on physical and mental health, burden, symptoms, and effects of kidney disease on your daily life.
As far as my quality of life, I feel like my quality of life is pretty good for someone on dialysis. Compared to what I want to do if I were healthy, there's no comparison. Just because I'm on dialysis doesn't mean I should compare myself to the average dialysis patient, because then the dialysis companies are dictating my quality of life. I'm far below where I want to be.
It's not a question of "has dialysis disabled me more than enabled me." Dialysis has not disabled me more than I'd be if I had refused dialysis, because dead is pretty damn disabled. Hemo has disabled me far more than I was on PD, and ESRD in general has disabled me far below when I was healthy.
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Dialysis trashed my life. It absolutely ruined everything I was doing at the time. It got so bad that I asked myself if I was living to do dialysis or was dialysis allowing me to live? I hated it. It took an hour to get to the dialysis center, four hours of treatment, a half hour to de-hook and another hour to get home. The next day was spent getting over the previous day.
Before I decided to kill myself, I tried the methodology I often use when faced with a seemingly insurmountable problem; I educated myself, challenged the Nurse and Doctor, tested my water drawdown and arrived at my own treatment plan which was in effect for about two months before I demanded a blood/urine test to see if I needed to be there at all.
I think they were pleased to get rid of me.
I have been off dialysis for a while now and I am about to go under radiation for Lymphoma. Prognosis is good. I will not ever, ever go back on dialysis. You can drag me kicking and screaming but I wont go. Never!! Nope! Unless I get sick again.
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It is not just dialysis that shi*s your quality of life up, it is all the other things that go with it. Heart attacks, infections, hernias, pills for this, pills for that, its an whole combination of things. Yes they say dialysis to live but I think most of us are living to dialysis. Quality of life out of 10, 5 on a good day, 4 on a bad.
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We had such high hopes that dialysis would improve Laurie's quality of life when he began in February - alas it has just not happened . There have been numerous complications and interuptions to his treatment . I was shocked and horrified last week when we got the latest blood test results and his creatinine was worse than it has ever been at 780 . He goes into hospital tomorrow to have the hernia repaired . He does not have a social worker and nobody else has asked how he is coping . He is hanging on to his sanity by a thread I fear . We had to ring technical support a few nights ago as the blasted machine kept alarming and we could not get it past " priming " . Luckily the guy was really supportive and kind because Laurie was on the verge of tears of despair and ready to chuck the thing out of the window !
Hopefully the hernia repair will be the last of the complications and he will begin to feel benefits of dialysis as I don't know how much more he can take .
So as not to alarm or disillusion others beginning on this journey , I feel I should point out that Laurie has several other issues with his health other than the kidney failure .
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I'm pretty down today, so ask me again tomorrow and I may change my mind, but today I say dialysis just prolongs the inevitable. It's hard on the patient and everyone in their life. If I had died 4 years ago when I would have without dialysis, my husband and my son and my extended family would have been so devastated, BUT by now they would have found a new normal. My husband, I'm sure, would have remarried and would not have to be a sex-starved, worry filled, caregiver all the time. He would be camping and boating and living! My extended family would still mention me at family gatherings with a funny story or a sad sigh. They'd tell my son stories about me and remind him how much I adored him. My son's the one who would have had it the hardest, loosing his mom at 10. But even he, at almost 15, would have made peace with the reality and would be living. I mean just this year alone I was in the hospital at the beginning of every quarter of his school year. He had to watch and worry as I underwent 10 surgeries and so many hospital stays I lost count. He had to suffer through cancer with me and even the transplant is terrifying. Not to mention the burden of having a depressed mother. So, today, I think dialysis just prolongs the inevitable and it would be more humane to all involved to let nature take its course. Good thing I see a psychiatrist on Friday!
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I started dialysis one year ago today, and was on it for a total of 7 months before receiving my transplant. I adopted the philosophy that just because I'm on dialysis, I'm not going to let it win. There was no way in hell I could let that happen, and it didn't! I did HD in-center, and was open to doing HHD if the transplant fell through. I ended up doing a LOT of reading while toiling in that chair, which I enjoyed (I like to say that was the one positive out of the whole thing, since I like to read, but don't always carve out the time for it). I continued to work FT. I enjoyed the staff at the center, which helped my having to be there. I started to feel better after about a month or 2 after I started D, when my hemoglobin finally raised to a "new normal" level. I took a week off in August and did a day trip or 2 on non-D days. I still went to musicals and concerts. RM visited me, and we did things like hang around Seattle, The Boeing Tour, dined out (including after D), and went up to Canada on my D weekend. I went to Vegas for a 3-day IHD weekend, bookended on each side by a D treatment (I had to hightail it through rush hour traffic to get to the airport after D - that's a 30-mile commute!) I did not let dialysis stop me from living and enjoying life. Yes, it got in the way at times, but that was my new reality. I was lucky in that I dialyzed at a center that was willing to be flexible with your schedule when you gave them enough notice. *That* was a lifesaver for me!
KarenInWA
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Oooohhhhh.....do not get me started on this BS that they call "quality of life". Before I started dialysis, I worked full time, took care of my home and yard, enjoyed time with friends and family, volunteered for a local civic organization and had time for hobbies. I also enjoy food and cooking very much.
Now, I barely have time for work. My house and yard are trashed and will be for the foreseeable future unless God grants me a maid and a gardener, neither of which I can afford on a constant basis. I do pay the neighbor kid $20 every other week to keep the grass cut but that's about it. Time with friends and family is carved out whenever I can. Hobbies and volunteerism have gone by the wayside for the most part. And food and cooking - it's a constant battle to balance what I "can" eat with what I want to eat.
The only advice that I can give you is the path I believe you have already chosen - home hemo. In-center, the quality of life was at an absolute zero. You live your life by their schedule. In-center treatments were so draining for me that treatment evenings were complete losses - that's three days a week, for those counting at home. The staff was so used to dealing with people twice my age that they just didn't have the resources to be able to help me with the issues that I was facing.
Now, with home hemo, I am in control (for the most part). I do my treatments on my schedule. I know my lab values and I know the boundaries that I can push to allow myself to eat mostly what I want and still keep my lab values in line. I appreciate not being in the center and being part of their asinine games, that I used to vehemently bow out of as I wanted no part in that childishness. Just give me my lab values (the entire report, thank you) and let me move on.
The quality of life survey that they give you is also a bunch of BS. It tries to brainwash you into thinking that you should be grateful to be on dialysis. :sarcasm;
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Having what i feel as being run thru the wringer ,my quality of life is still very good. In 1997 i started Dialysis in 1999 I received a kidnet and Pancreas transplant. 12 yrs later I lost the kidney but the pancreas continues to carry on. I was diagnosed ainsulin dependant diabetic when i was 13 , sp 1975 . That was the start . This affected my eyes , kidneys heart , everything.
My attitude toward these things are as such that I do not let them bother me. I am alive . i am walking , I am reading , I am volunteering at my sons school. I am waiting for the next great medical breakthru.
last month a collasped at work , I had had a heart attack (#2) and am now walking around with a so called LifeVest defibulator on me incase my heart stops . I am 49 , my attitude is still up.
Dialysis allows 3.5 hrs a day that I can not be bothered ( i sleep , watch Tv and nobo=dy can change that.
I will probbly expire at an early age but I am ta=eaching my son how to live life . You can not dwell on what has happened , yu must look forward and make your own quality of life.
Katonsdad
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I only now realize that I've been on D most of my life (oh hold if I count my transplant yrs with the 'normal person' yrs its nowhere near that bad. But even those yrs included a lot of surgeries etc., and were a long time ago, so what do I want to compare my quality of life with. I'm sure I have a better quality of life than a lot of people in a worse situation than men(not even just medically).I don't live in some sub-saharan country. Don't live on either of the poles. There is a beautiful sunset at the moment, I just finished my 3' bacardi-cola, had a nice meal (chicken,rice,leeks). Hubby watching TV. Hardly any cramps today. But this is Sunday, Monday will be okay too, cos no checkups for heart, eyes, muscles etc., till 1800 and it starts again. So its no comparison to a 'healthy' life, but its better than being a cow.
If anyone connected to healthcare asks me about quality of life, I get angry, and tell them that I don't want to talk about it, cos it upsets me. I don't mind you asking though, puts it all in perspective for me I suppose
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I'll be brutally honest, since starting dialysis years ago quality of life for me has gone down the crapper. I've done both forms of dialysis, PD and hemo (not conventional though).
PD wasn't 'too bad', but I use that term lightly. It did give me some freedom, but I felt that I was always 'clock watching', that is counting down to my next exchange. I should've have went with the cycler back then but I didn't pursue it. Going out on weekend nights was tough, as I wanted to stay out late but couldn't because I had to do an exchange. So my wife and I never stayed out late just so I could go home to do an exchange. One good thing about PD is that we could still travel, but again I couldn't really enjoy myself due to the fact that I was counting down to my next exchange. I also enjoy foods of all kinds, so having to be on a renal diet was tough. All the foods I enjoyed had to be cut out, like cola, orange juice, milk, and fast food.
Doing nocturnal hemo gave me abit more freedom in the foods that I could eat, but my quality of life went downhill fast. Being connected overnight to a machine that was super finicky was not fun. I toss and turn alot in my sleep, so being connected by a tube was extremely restrictive for me. I also never slept well at all, as the machine was loud and alarmed easily.
I made a decision that the hospital never knew about, instead of doing 8 hours overnight (for 6 days) I did 3 hours a day for 7 days. My bloodwork didn't turn out that great, but I had a slightly better quality of life. If something should happen, I accepted the consequences, as I value my quality of life over being hooked up to a machine for hours on end.
There are other factors too that brought down my quality of life (PD and Hemo), one of them is delivery of supplies. On PD I could at least leave a lock box and the guy would let himself in and put the stuff in the basement, but on hemo I had to be home. Plus, the tanks for hemo had to be replaced every 2 - 2.5 weeks, it was tough working FT, and then having to take time off to be at home for supplies/tank replacement. I calculated that if I didn't receive my transplant, I would have used up my whole year's vacation allotment in a very short period of time. Plus, came bloodwork. Even though the hospital trained me on how to collect blood for the lab, I eventually didn't do that and booked time at the hospital so they drew my blood (at the same time I would do a dialysis run there), but that meant taking more time off work.
As voiced by other members, I hated dialysis and I hated having that machine and all of its supplies in the house.
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I used to snarl at the social worker and dietitian in my old center. They would ambush me when I was in the middle of a treatment and would start talking to me like I was either a slow three year old or like dialysis was a gift that I should be grateful to have and that I should arrange my entire life around it. I constantly told them that they would change their tune if the roles were reversed and they were the one stuck in the chair for four hours at a time. They were truly simple minded individuals who couldn't fathom that I wanted to keep control of my own life.
At least now that I am at home, I only have to deal with them on a very random basis. The new dietitian and social worker still don't have anything useful to offer but I don't have to be subjected to them all the time.
If anyone connected to healthcare asks me about quality of life, I get angry, and tell them that I don't want to talk about it, cos it upsets me. I don't mind you asking though, puts it all in perspective for me I suppose
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I haven't posted this question for my own benefit or because I want any advice, but, rather, because I have been discussing with various people in the renal community about how to define "quality of life". ESRD is debilitating and dialysis can be, too, so it begs the question of whether simple survival means dialysis is "working" or whether we should have a more far-reaching goal, such as rehabilitation. What does rehabilitation look like? Does it mean returning to school or to work, or does it mean being able to live a fairly normal day with a fairly normal energy level so that you have the desire and opportunity to have a modicum of a social life or family life?
This article from the Wall Street Journal begins to ask these types of question...
http://online.wsj.com/article/SB10001424052702304450004577275911370551798.html
About 20 years ago when my dad had a heart attack, when he got out of the hospital, he was enrolled in a cardiac rehabilitation program. When my stepfather fell and broke his hip a year ago, he also was enrolled in physical therapy. In both cases, these men were given the chance to not only survive but also to be made BETTER, to RECOVER and to REHABILITATE. Is there something similar available to dialysis patients? Should there be? If you think so, what might that look like? Can dialysis patients hope to be rehabilitated only if they are able to take advantage of optimal dialysis, ie, outside of the thrice weekly, inclinic template with which we are all familiar?
An LDO/Medicare is not going to want to invest funds into "more dialysis" if they cannot measure the clinical advantages, but then again, right now we get all sorts of numbers that don't mean squat if you feel like hell.
I know how D can trash your life. I saw my mother on D, and I read all of the stories here on IHD. Can you think of anything specific that could improve what you define as your quality of life? Would it be more dialysis? More psychological support? It seems that social workers are too bogged down with either insurance issues or travel issues, so should perhaps each clinic have a psychologist on board?
It seems that there is a preponderance of clinical evidence that inclinic patients should dialyze at a MINIMUM of 4 hours per treatment and that the "killer weekend" should be abolished. We've all been expected to accept current practice as the norm, and most of us don't think to challenge it. But if 4 hr treatments as the minimum and the abolition of the two day interdialytic break became the NEW norm, thus giving you access to more dialysis, do you think that would improve your quality of life?
How about if there were more clinics that offered incenter nocturnal D programs...if that became the new normal for D clinics, would that be advantageous to you?
I try to draw parallels between ESRD and other chronic conditions, and I am hard pressed to think of another chronic condition whose ongoing treatment is so onerous. That is not to say that ESRD is the most awful malady in the world; this is not a contest. But ESRD just seems somewhat unique in that dialysis in and of itself is particularly burdensome. Any thoughts on this?
Anyway, thanks for all of your replies and I'd welcome even more. Again, I'm not looking for advice for myself, so please feel free to give honest thoughts and opinions without fear of upsetting anyone.
I do realize that "quality of life" is defined differently by everyone, and I do understand that the more you feel you've lost, the harder it will be to feel like you still can have a good quality of life on dialysis. The difference in all of your replies in and of itself makes the point that this is hard to measure.
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I would say that my quality of life has improved somewhat since I started PD five months ago.
I have four grades of how I am feeling - bloody awful, OK, good, and bloody fantastic. I seem to average one or two BA days per months and 15 to 20 BF days. I deliberately look at a good day and work on turning it into a BF day.
I would rather not be on dialysis, but prefer it to the alternative. I do not want a transplant. I am 69, so I've done all my travelling and have a very quiet social life. My pleasures in life now are my cats, gentle gardening and my textile crafts. I can't imagine being young and on dialysis - that would be very frustrating.
Since starting dialysis I feel more alive and alert, and I can eat pretty much whatever I want. I'm doing CAPD. I was worried about the time I would be losing each day, but I've settled into a quiet 'exchange' time each time I do an exchange. The only unproductive time is the 5 minutes preparation time.
Today, I can feel another bloody fantastic day coming on!
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Mary D, I love your "BF" day vs "BA" day...I'm going to remember your post! Working to make a good day into a BF day...I like the way you think.
I find pleasure in the "slower" activities of life, too...reading and gardening. I also really love films, so as long as I will be able to read or watch a good movie while I dialyze, I can find some pleasure in that. Thanks for your reply; it's very useful.
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The way I would say it is: how is my quality of life with CKD? Starting the clock with my Tx 7/88 I've been stage 5 for over half my life (cassandra just made me realize that) what exactly am I suppose to be measuring my current QOL against? How I felt in high school?
The problem I have with "rehabilitation" is that it always seems to imply another appointment(s), another person to tell your whole story to, another tedious discussion with the social worker. Instead of creating another program that sucks up more time I don't have, I want to make the treatment for my CKD result in the most BF time - I want to maximize the time I am awake, and feeling, if not fabulous, then at least firing on all cylinders. There is no rehabilitating me back to being a urinator. If the system wanted to help me it would work to, as much as possible, leave me alone to do my dialysis while I sleep. Which works pretty well for me.
Develop treatment for severe CKD that impacts my life the least. The least dietary restrictions, the least commitment of my waking hours, the least time in the hospital, the least time feeling sick. Give me a treatment for my CKD that gives me the most BF time, per day, per year, per life.
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More dialysis will not improve my quality of life. I get sick of the more dialysis bandwagon. Everyone should be able to tailor this treatment protocol to what works for them. If I with my residual function feel good with less dialysis and can keep my labs at acceptable values then it should be between me and my neph as to how much and when I dilate. But the clinics don't want that because they can't staff for it. So we are stuck with one size fits all.
Psychologists don't really fit into the clinic model weather. In a clinic, your business is everyone's business because you are all jammed in one treatment room. Rounds are done with other patients no more than two feet away on either side. Not a place where i would want to air my dirty laundry.
Sine you mentioned other maladies, I'll go there. I have to preface by apologizing to any cancer patients here because I do not want to make light of cancer. I just can't help but compare and contrast. Cancer centers are usually state of the art with every amenity available. Dialysis centers can be dingy and run down and lacking in any sort of amenity. When my mom was diagnosed with breast cancer, she had all sorts of choices of complementary therapies available to her. Yoga, massages, etc all for free. Dialysis patients don't get access to shit. I have yet to figure out why this is. Maybe we have to find a way to get the profit margin out of it so the dialysis providers have some sort of incentive to treat their patients like human beings not bags of bold and fluid with arms.
I know how D can trash your life. I saw my mother on D, and I read all of the stories here on IHD. Can you think of anything specific that could improve what you define as your quality of life? Would it be more dialysis? More psychological support? It seems that social workers are too bogged down with either insurance issues or travel issues, so should perhaps each clinic have a psychologist on board?
I try to draw parallels between ESRD and other chronic conditions, and I am hard pressed to think of another chronic condition whose ongoing treatment is so onerous. That is not to say that ESRD is the most awful malady in the world; this is not a contest. But ESRD just seems somewhat unique in that dialysis in and of itself is particularly burdensome. Any thoughts on this?
Anyway, thanks for all of your replies and I'd welcome even more. Again, I'm not looking for advice for myself, so please feel free to give honest thoughts and opinions without fear of upsetting anyone.
I do realize that "quality of life" is defined differently by everyone, and I do understand that the more you feel you've lost, the harder it will be to feel like you still can have a good quality of life on dialysis. The difference in all of your replies in and of itself makes the point that this is hard to measure.
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Ack, I typed this on my iPad. Sorry for the inadvertent typos.
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When I think of quality of life with kidney failure, I think of Stephen Hawking and his "quality" of life. He is an amazing man.
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cattlekid: Having just been through dialysis and cancer infusion, I can state with absolute certainty that you hit it right on the button. The cancer center (Infusion)was glorious with staffing and decor, the dialysis center was depressing at best.
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My Q of L improves greatly when I have control over my life. HHD certainly helps with that. how I view whether I have a good Q of L also depends on how I feel physically. for the pastfouryears I struggled on with PD, and my Q of L was the lowest that it has been. I have been CKD5 for nearly half my life, but during my ten transplant years (incidentally 19 years ago today, I had just received my transplant), my Q of L was the best that it has been since all this started ( and maybe for my entire life since I had a heightened appreciation of what I had).
As to how centers are kitted out, I am not sure how to fix that. In the UK a lot of the luxury items are paid for by charities, and I am not sure if this is thecause in the US. if it is achieved by fund-raising then shame on the charities set up for kidney patients. there is so much prominence and publicity for cancer charities but so little for kidney related ones. think that it's just be national organ and tissue donation awareness month. I doubt many of the general population were aware of this, but hey,anything to do with pink ribbons and the whole world knows.
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Within 5 miles of where I live, there are THREE "cancer care" centers, one of them is brand spanking new. I actually attended a lecture at one of them about living with the stress of cancer (I figured that maybe I could glean some benefit), but I am completely unaware of any "renal care" centers other than the dialysis clinic.
This clinic is on the campus of our local community hospital. The hospital is always sending me slick magazines about their wellness programs, etc. Just yesterday I received a fundraising plea, and on the form, there was a place where I could express a preference for where my donation would go...the maternity unit, breast care, cancer care, and two other options that I can't remember offhand, but nothing about renal care despite the dialysis clinic being RIGHT NEXT TO THE HOSPITAL.
I've been in the D clinic, and sure isn't all kitted out like the cancer centers are.
Bill, it sounds like you are describing nocturnal home hemo.
Yes, cattlekid, I agree that dialysis clinics offer little privacy. Is there any other disease the treatment of which requires you to be in the same room with a dozen other sick people? Maybe there is...I don't know, that's why I ask. So, I see your point. As for the "more dialysis" bandwagon, I suppose we all agree that the ideal would be for each patient to create their own treatment protocol aided by their neph, and I guess the more able and less sick of us have an easier time doing just that. But for whatever reason, the dialysis population seems to be particularly fragile and voiceless. It's hard to advocate on the behalf of fellow patients when you yourself are so ill. And when so much profit is at stake, who do you trust to go to bat for you?
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I think the reason that the dialysis population is so voiceless is that kidney disease for the most part NEVER ENDS.
Just look at the progression: stages of CKD, ESRF, dialysis, maybe a transplant. Then what? It's still not a cure and you may experience rejection and have to go back on dialysis and the cycle begins again.
The world wants miracles. The dialysis population can't give them miracles.
Then look at the average age of the folks in the dialysis clinic. I know that in my old clinic, I was approx. 40 years younger than most everyone there. Not to mention that most of the folks were disabled for various reasons and many were ethnic minorities. These are populations that already start out in disadvantages. Like you said, it's hard to advocate when you don't have any advantages yourself to leverage.
The way that dialysis is provided and paid for also doesn't help. Medicare pays a pittance and since what they do pay goes to a for-profit entity (most often), these entities have no financial advantage to provide anything but the bare minimums to their patients. Then, they also have a financial advantage to keep people on in-center dialysis. If they work to get all of their patients that are eligible listed for transplant, there goes their profits out the door.
How to change all of this? We have to somehow change the world's perception that dialysis patients are as worthy of attention as those from other more well-known diseases.
Yes, cattlekid, I agree that dialysis clinics offer little privacy. Is there any other disease the treatment of which requires you to be in the same room with a dozen other sick people? Maybe there is...I don't know, that's why I ask. So, I see your point. As for the "more dialysis" bandwagon, I suppose we all agree that the ideal would be for each patient to create their own treatment protocol aided by their neph, and I guess the more able and less sick of us have an easier time doing just that. But for whatever reason, the dialysis population seems to be particularly fragile and voiceless. It's hard to advocate on the behalf of fellow patients when you yourself are so ill. And when so much profit is at stake, who do you trust to go to bat for you?
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Quality of Life on dialysis , 1 out of 10 Im on overnight PD, I work I Dialise thats it , JBeanys comment is so true , My hobbies were kayaking , mountain biking , hill walking and Ive always been very self reliant , Im still breathing but ESRF ended my life I live to work and Dialise to live.I keep going because Ive got a family who rely on me if I didnt I really dont know if I would bother. No one has ever asked me about quality of life generally the medical proffession tell me that you can live a near normal life , dont know who they are trying to kid, In fact last time I asked to be put on happy pills they didnt even ask why , just prescribed them.
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" . . . the dialysis population is . . . voiceless . . . "
"How to change all of this? "
Gerald mumbling here, thinking.
The last time I spent any effort in advocacy was for Women's Rights. It has been a long long time since then. As for your comments that dialysis patients do not get better or that there are no miracles in renal failure; I am the exception. Perhaps I owe all of you something more than my efforts to brighten your days. I will think on this.
gerald
Old Hippy
Feed me thoughts.
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thanks already GL, and how are you batling with your treatment? Sorry I didn't ask earlier. And thanks MM for asking the QOL-question in the first place. The article you included felt a little bit iffy to me. It feels a bit like the beginning of the discussion about; is it affordable for society to keep your QOL high enough to keep paying for the effort? Like, no we can't afford to pay for all the things to improve your QOL, so we understand if you want to get out, if you fill in this form you can go to that room, and end it all (the feeling I used to get when living in the Netherlands, eventhough most people (healthy) will strongly deny this.
The more, and longer D is floored, compromised by financial incentives. And talking to a psychologist? I've tried, but the disinterest, the ignorance? If the psych has not experienced D themselves, I don't even want to see them.
I don't know about the voiceless issue being the problem either. The transplant community isn't voiceless (transplant -games, tv-adverts) but has it actually changed anything?
The best thing that could change for the better now, would be to ditch the 'One fits all' attitude towards D.
take care all, Cas
But the discussion is good.
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Quality of life surely is about how much you enjoy your life and that is hard to do when you feel like death warmed up . Although Laurie has had a chronic illness - severe rheumatoid arthritis - for over 25 years , up to the time his kidney function was bad enough to start dialysis , he still enjoyed life . Even after losing his eye and half his face due to cancer , he kept up with his hobbies , continued to do the household shopping , looked after his garden , his birds and his dog and cats and enjoyed the company of his grandchildren . These things brought him joy and made him happy .
Since starting dialysis and all the complications that came with it , he has felt too ill and has not had enough energy to do any of these things . If one is lucky enough to qualify for a transplant , then this at least gives some hope that things will get better . How to continue without HOPE , now that is difficult . Our 16 month old grandaughter put her arms up to Laurie yesterday for him to pick her up and he did not have the strength to lift her on to his lap - he was devastated .
I don't know why some illnesses are afforded more support and sympathy , better facilities , more funding - whatever , maybe the majority of the population do not fully understand the implications of kidney disease - we sure as hell didn't until it happened to Laurie . We just thought OK , he will have dialysis and everything will be sweet .
Maybe another " awareness week " you know like mental health awareness or cancer awareness and people can be educated .
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I think everyone's quality of life has been changed due to kidney failure and all the resulting medical and mental stuff that comes with it. For me, I think I'm in better shape physically than more other here. Those with other medical conditions beside kidney failure. BUT my QofL has been changed. Last Saturday, the day was wonderful and I spent the early part of it motorcycle riding with friends. BUT - I HAD to cut it short to go do an exchange. Sunday, was one of my grandson's birthday party and I had to leave early to get hooked to the cycler. YES my QofL isn't what it used to be. But I'm still trying to keep going and enjoying what I can do and realize what I can no longer do. Like all of you, I too have felt the desire to "just walk away" from it all and let nature take it's course and my life. But I've also realized that I'm not ready to give up just yet. Too many grandkid's birthdays, Too many roads to ride, too many other things that need to be completed. So I will continue on. And I will continue to read and post here, just because it makes me feel better to be among friends who understand. Grumpy
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Re the point that ESRD never ends, that is very true, but almost half of all Americans suffer from a chronic, incurable disease.
http://www.cdc.gov/chronicdisease/overview/index.htm
Yet other chronic diseases get more PR than ESRD and dialysis. I saw yet another ad for yet another breast cancer fund walk, and all of the participants (or at least all the people in the ad) were young or young-ish. Maybe people on dialysis aren't pretty enough or don't photograph well. That's meant to be a flippant remark, but I think there is a grain of truth in it. The truth is that the majority of people on dialysis are older, many being MUCH older, and the optics aren't so great.
That thought lead me to my next thought. The majority of people on dialysis are either older or of an ethnic minority, and those are two groups who don't have much power in our society today.
To be fair though, here in Chicagoland, we have been seeing ads on TV from the State advocating donation. It features a middle aged blonde woman who apparently worked at one time as some sort of tx coordinator and then found herself in need of a kidney. We went to the movies yesterday ("Chimpanzee"), and this ad was shown before the film. Also, matchingdonor.com is running an ad I hear every day on the radio ("Do you wanna piece of me?"), so we're not being ENTIRELY ignored. But I can't escape the idea that our PR isn't so great because esrf and dialysis is perceived to be an "old/brown people's disease". I hate the idea of being ageist or racist, and if my perception is incorrect, PLEASE TELL ME because I do NOT like believing this way.
But then there's Alzheimers. Old people are the primary victims, but we hear plenty about it. My local hospital that I complained about has support groups for THAT disease, but then I remember that when you see ads for Alzheimer care, they are aimed at a younger generation that suddenly find their ageing parents need help and don't know where to turn, so those ads always feature younger people.
gl, do you think dialysis cured you of kidney disease? Sure, in cases of acute kidney injury or certain kinds of chemical poisoning, dialysis can either fix you right up or give your kidneys a chance to recover. But I doubt that the general public pictures these instances when they think of dialysis.
There are plenty of groups that aim to give renal patients a voice, but when dialysis becomes a profit-making business, individual voices become muted or else they are hijacked by monied interests.
I personally am hoping for the day when the current way of providing and receiving dialysis becomes ancient history. I place most hope in better machines, better technology. Look how quickly cellphones evolved from bricks to the tiny devices of today that stream video and are also game devices. But dialysis technology has been stuck in the past forever. Maybe the new work on the wearable artificial kidney will transform dialysis and will make the whole "spend the day at the clinic" template a relic of the past.
BrendaSeal brings up a good point; I don't think most people have a clue as to what dialysis really means, how it works and how it affects you. They think, Oh, OK, so your kidneys don't work, well, you can just go on dialysis or just have a transplant, no problem. It's all so simple, really. I suspect my husband thinks that way, and he LIVES with me!
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MooseMom:
Dialysis doesn't cure anything. Dialysis bought time so my kidneys could heal themselves.
gerald
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Cattlekid, you are so right. Cancer has a 5 yr. status and everyone celebrates when their loved one passes the 5 yr mark. There is no party for being on dialysis or having a transplant. 2 years, 5 years. 10 years?? We can never say we are in remission. There is no cure, although the world thinks we are cured - you look so good, you must feel good too. HA!
My husbands sister died of breast cancer and a second sister was diagnosed with it 2 years later. He supports the pink projects, but it even upsets him that everything has a pink ribbon and they get so much support. He says it is all politics. I'm not a political person, so I say "yes dear". :rofl;
Good post Moosemom. I worry the private dialysis companies will always hinder the actual production of artificial kidneys. Wake Forest University has been working on it for years; artificial ones, growing new ones from stem cells. We need a Steve Jobs type of person for kidney disease. He advanced his products so far and fast. There are times I think that kidney disease is the ugly step child of all illnesses.
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Paris, I know about the research going on at Wake Forest; the "3D printing" of solid organs. I believe they've done it with a bladder and have actually transplanted it into someone, but a bladder is very different than a kidney! A bladder doesn't have the myriad of tasks that a kidney does.
And I think you have a point that LDOs have a financial reason to deter any research that gets people out of a dialysis clinic. But on the flip side, if we had the technology to ease the inclinic burden of dialysis, Medicare might have more money to spend in other areas and the American taxpayer may get a break. It's not even so much the cost of dialysis, rather, it's the prohibitive cost of hospitalizations that result from poor dialysis treatments and practices that need to be addressed. Having to spend time in a dialysis clinic receiving sub-par treatment that sends you to the hospital surely doesn't improve anyone's quality of life.
A "Steve Jobs of Dialysis"...what a brilliant idea. Maybe there is someone out there already who fits that role! The inventors of the NxStage machine could vie for that honor, just as the team at Wake Forest.
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Advocacy begin with basic knowledge and understanding of the problems. In that regard I have collected bits and pieces of data and ask you to read and comment.
gerald
Miscellaneous information:
1. The number of dialysis outpatients receiving Medicare is between 330,000 and 437,000.
2. Medicare pays over $24 billion for end stage renal patients.
3. (Symptoms) usually occur when its too late and ... theres not that much that can be done to reverse the damage. Thats whats very sad.
4. Patients on dialysis, they have to follow a strict diet but very seldom they do.
5. There are more than 4,700 Medicare approved renal dialysis facilities across the US.
6. To determine if an ESRD facility is to be certified by Medicare, the State survey agency performs an on-site survey of the facility using the standards in the ESRD CfCs. The ESRD facility is considered Medicare certified and eligible for Medicare payment if the survey finds that a facility complies with the conditions for coverage and all other Federal requirements are met. Medicare payment for outpatient maintenance dialysis is limited to facilities meeting the ESRD CfCs.
7. Examples of a bad dialysis clinic per inspection by the State of California: Records of state inspections at the Temple City and Azusa clinics reveal a multitude of problems, including improper sanitation of equipment, dirty conditions, and a lack of labels on dialysis solutions and chemicals. When Temple City Dialysis was inspected in June 2009, the inspector found that employees were not sanitizing pieces of equipment. The inspector also found dust on floors, counters and air vents, leaks in the ceiling, and debris on the floor of some rooms. Bottles of sterilizing fluid were stored in milk crates, trash bins were placed on dialysis machines and stained towels were found under a sink. When Azusa Dialysis was inspected in September 2009, many of the same conditions were found. Ceiling and wall vents had "an accumulation of dust," there was dust and debris on the floor, and a handwashing sink was being used to store supplies. Soiled gloves and a syringe were found on the floor of one room, and sterilizing liquid was stored in a dusty milk crate. Sterilization and cleanliness are important during any medical treatment, but especially so in dialysis. Because the patient's blood is being removed from their body to be cleaned, bacteria and viruses in or on the equipment could potentially be passed directly into the bloodstream. Messages left for the administrator at Azusa Dialysis were not returned. State records identify the administrator as Yaseen Bari, who is also on record as the administrator of Temple City Dialysis.
Comments regarding mortality rates and dialysis center conditions:
Administrators defended their clinics, despite high mortality rates, saying many factors that contribute to patient deaths are out of their control.
Lauren Moughon, spokeswoman for DaVita, one of the largest chains of dialysis centers in the country, said mortality rates are often "just the luck of the draw."
"People that crash into dialysis tend to be much more fragile and much sicker because their blood has gotten toxic and it's just a bad situation," she said.
Salvador said Temple City Dialysis has a high mortality rate because some of the clinic's patients stopped dialysis and died after entering hospice care.
And she said sometimes life-threatening infections result from regulations put in place by HMOs. In particular, she said the clinic cannot remove patient catheters without prior approval, leading to an increased possibility of infection while they wait.
That sentiment was echoed by Mary Shih, administrator of the Rosemead Dialysis Center. That clinic has an overall mortality rate of 20 percent and a first-year mortality rate of 36 percent.
Some patients do not do their part to stay healthy, Shih said. One patient, who was a construction worker, got an infection after getting his catheter dirty while working, she said.
"No matter what you tell patients they just don't listen," Shih said. "It's hard, it's really difficult."
Shih also described how larger clinics with more resources engage in "cherry picking" the healthiest patients. That leaves the smaller clinics with only the sicker patients who are more likely to die.
Brian Hess, a 30-year-old dialysis patient from Oklahoma, said he's seen cherry picking first hand. Some clinics will turn away patients who have health problems in addition to kidney disease, he said. A friend of his was refused treatment at some clinics because of his mental illness.
"I don't think someone should be turned away for something like that when this is a life-or-death situation," he said.
Hess, who has been suffering from kidney disease from age 6, agreed that patients are often responsible for their own health issues, but said nurses don't always seem trained well for their jobs.
"It's on both sides of the fence with the patients and with the nurses and the techs and it all has to do with education on both sides," Hess said.
And he said clinics do seem to vary a lot in quality, with some being too crowded or not clean enough.
Because of the poor conditions at some clinics and the possibility he could catch an infection during treatment, Hess has now switched over to home dialysis. He said it is not only cheaper, he feels better about the process because he is in charge of his own treatment.
"The (treatments) in centers are designed to clean your blood just enough to keep you alive, whereas at home you're doing it much more often and so you're doing a much more thorough cleaning so you're healthier and feeling better," Hess said.
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"A New Attitude"
Dialysis companies and their staff need to take on a new attitude in relation to their quality improvement. In order for this new culture to be successful, there must be teamwork, leadership, and education.
The other important factor in this is to empower certain individuals such as the staff member and the center Director. This new paradigm needs to blossom from the staff outward to the management. Each person in the dialysis center needs to "own" the charge of quality improvement.
Review, Monitoring, and Evaluation
Two items that should be addressed when discussing QA/CQI are:
(1) What needs to be reviewed, monitored, and evaluated, and
(2) Who will need to be reviewing those things.
According to past surveys of dialysis centers and quality standards, the items that need to be reviewed are:
Growth and capacity of the center;
Patient mortality;
Patient satisfaction;
Patient services committee findings;
Clinical standards and outcome goals such as adequacy of dialysis, nutrition, bone disease, anemia, blood pressure, serum sodium bicarbonate, vascular access, and patient treatment adherence;
Hospitalization trends;
Infection control;
Adverse occurrence reporting;
Physical systems review;
Safety program review;
Policy and procedures;
Management;
Audit tool review;
Labor trends; and
General discussion area.
Roles of the Staff Members
The following people need to not only participate in the QA/CQI process, they also need to be empowered to "own" their particular areas. They must understand the importance of the program and how their thorough, consistent monitoring, evaluation, and follow-through will improve the life of the patient.
Members of the QA/CQI team will need to assume the following roles:
Medical Director;
CEO of the center;
Clinical coordinator (or charge nurse);
QA/CQI coordinator;
Anemia manager;
Biomedical technician;
Vascular access coordinator;
Dietitian;
Social worker;
Safety/hazardous communication director;
Reuse technician;
Infection control coordinator;
Training/in-service coordinator;
Facility maintenance manager; and
Peritoneal and home or acute dialysis representatives, if these programs are available in the facility.
Specific Accountability Tools
The reporting of these areas will consist of each member of the QA/CQI team having an individual tool that is specific to their area of accountability. A simple example of this is in the bone management area.
The bone management data will be reported during the QA/CQI meeting. The individual names of the patients will not be discussed at that time, however, due to patient confidentiality. But, in order for improvement to actually occur, during some venue, both the overall and individual patient data will need to be reviewed to determine why the goal is not being met, and a plan to implement how to achieve the goal will need to be established.
Conclusion
The quality assurance/continuous quality improvement program is not only very important in order to ensure that quality dialysis is being delivered to the hemodialysis patient, it is also an obligation that the dialysis community owes to the patient. The provider of this life-saving service must strive to improve the lives of the patient and ensure that the established goals are met. Even though there will be many man-hours required to develop, implement, train, and monitor for the success of the program, it is one program that must be in the forefront of the dialysis center from the President/CEO of the company to each staff member at the individual facility.
Patients need to understand the QA/CQI program that is implemented in the center where they dialyze and how they fit into that program. They should feel free to ask questions about the overall quality of care that is provided by the dialysis staff. They have the right to know what the quality of care is they are receiving!
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The quality of my life since I started dialysis has improved. Yes, improved, because my health was so bad before dialysis, that I immediately noticed flashes of improvement. That said, I hate dialysis, especially the time in the kidney center, as it is like a nightmare version of Groundhog day. It's the needles, the body sucking dry, the cramps at the end, and the empty headed feeling. It varies, and some days aren't so bad. Sometimes I get cramps in the middle of the night. Sometimes my sleeping is disrupted. Sometimes I get really tired. But other times, I feel really good, after dialysis, and really enjoy life. I keep trying to adapt to the changes, and I think that helps. But, despite my best efforts, some days just suck. I live for the good moments.
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Re the point that ESRD never ends, that is very true, but almost half of all Americans suffer from a chronic, incurable disease.
http://www.cdc.gov/chronicdisease/overview/index.htm
Yet other chronic diseases get more PR than ESRD and dialysis. I saw yet another ad for yet another breast cancer fund walk, and all of the participants (or at least all the people in the ad) were young or young-ish. Maybe people on dialysis aren't pretty enough or don't photograph well. That's meant to be a flippant remark, but I think there is a grain of truth in it. The truth is that the majority of people on dialysis are older, many being MUCH older, and the optics aren't so great.
That thought lead me to my next thought. The majority of people on dialysis are either older or of an ethnic minority, and those are two groups who don't have much power in our society today.
To be fair though, here in Chicagoland, we have been seeing ads on TV from the State advocating donation. It features a middle aged blonde woman who apparently worked at one time as some sort of tx coordinator and then found herself in need of a kidney. We went to the movies yesterday ("Chimpanzee"), and this ad was shown before the film. Also, matchingdonor.com is running an ad I hear every day on the radio ("Do you wanna piece of me?"), so we're not being ENTIRELY ignored. But I can't escape the idea that our PR isn't so great because esrf and dialysis is perceived to be an "old/brown people's disease". I hate the idea of being ageist or racist, and if my perception is incorrect, PLEASE TELL ME because I do NOT like believing this way.
But then there's Alzheimers. Old people are the primary victims, but we hear plenty about it. My local hospital that I complained about has support groups for THAT disease, but then I remember that when you see ads for Alzheimer care, they are aimed at a younger generation that suddenly find their ageing parents need help and don't know where to turn, so those ads always feature younger people.
I think focusing on the public adverts is narrowing your view. I did not follow the cdc link but I don't see age being the issue. How many people can say they were being treated for breast cancer at 2 years old? Kids are generally healthier than adults, but they do go into kidney failure and they do get some types of cancer, but not the ones you've mentioned. I just don't know that people understand kidney failure as somehow only an older person's disease. In my experience, of course, I went into kidney failure as a child, and my 70-something grandfather and my 90-something grandmother both died of cancer. With Alzheimers, well, the adverts would focus on how it affects the family, wouldn't they? It does not make much sense to try to appeal to the people who suffer from it - they really are in no position to act on that information. Studies to better understand and reverse the effects of aging are actually very well funded whether we hear about them or not. One of our support people for the transplant has developed an amazing Alzheimers program that she takes all over the world. It is definitely all about the person with Alzheimers, not the family. And she is not a medical person, it is about improving their quality of life, getting them actively engaged with one another in whatever capacity they can still manage. Anyhow, I disagree that older people lack power. Unless they are somehow disabled, older people often have the time, and in some cases, the money to spare. AARP is quite a powerful special interest group. Yes, youth is frequently worshiped and sought after, but that does not mean that young people have more power to change their world.
As for race, when you are talking about the racial profile of kidney failure, you are really talking about Type II diabetes - the leading cause of kidney failure and more prevalent in certain minorities. So, really, we should probably be questioning why there are not flash social marketing campaigns for that disease. I took a basic public health masters level course last term and barely escaped with my sanity. Everything was about waggling a finger at sick people for not taking care of themselves and bringing your condition on yourself through lack of prevention. This is especially fashionable with Type II diabetes, although it seems pretty obvious to me that there is a genetic link there. If you come at people with only condescension and blame to offer, it is small wonder that people will tune you out. I would like to see our culture shift from one of thinly veiled hostility toward the chronically ill to support so that people can feel empowered. I thought Bill's take on quality of life was pitch perfect. Maybe the doctors could stand to lose their paternalistic attitudes and approach people with the idea that they are capable, intelligent individuals who want to be more than a disease, and see where that takes them.
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Anyhow, I disagree that older people lack power. Unless they are somehow disabled, older people often have the time, and in some cases, the money to spare. AARP is quite a powerful special interest group.
Ugh...I bought a year's membership to AARP, and they send me their magazine that covers all sorts of issues related to older age. Not once have I seen anything about dialysis or renal disease...not once. So while AARP might be a powerful special interest group (mainly as a vehicle for selling insurance), they don't seem to have any special interest in dialysis.
The average age for dialysis patients in the US is over 60, and I suspect that whatever condition has brought them to ESRD has impoverished them and has robbed them of much free time. I further suspect that this population is indeed "disabled".
Of course you can get ESRD as a child, but how often do you see sad stories on TV about children on dialysis? We've all seen the many media stories and photos of sad, baldheaded kids with cancer. I've not ONCE seen a photo in the media of a child on dialysis. Maybe I've just missed them.
I may be waaaay of course, but I can't help but wonder that if ESRD afflicted more working age people than older people perhaps already on Medicare, we'd see more in the way of progress. This is not a long held belief of mine; it's something that just struck me at about 3AM this morning when I was trying to suss out why we hear so much more about AIDS or cancer or Alzheimers than we do about ESRD. There must be a reason, and I'm just guessing.
As for race, when you are talking about the racial profile of kidney failure, you are really talking about Type II diabetes - the leading cause of kidney failure and more prevalent in certain minorities. So, really, we should probably be questioning why there are not flash social marketing campaigns for that disease. I took a basic public health masters level course last term and barely escaped with my sanity. Everything was about waggling a finger at sick people for not taking care of themselves and bringing your condition on yourself through lack of prevention. This is especially fashionable with Type II diabetes, although it seems pretty obvious to me that there is a genetic link there. If you come at people with only condescension and blame to offer, it is small wonder that people will tune you out.
I suspect that there is a genetic link, too, and also to hypertension, but that's a difficult premise to air. I perceive quite a lot of general knowledge about diabetes, but living in Chicago where there are large minority populations may have just made me more aware of such campaigns.
I would like to see our culture shift from one of thinly veiled hostility toward the chronically ill to support so that people can feel empowered. I thought Bill's take on quality of life was pitch perfect. Maybe the doctors could stand to lose their paternalistic attitudes and approach people with the idea that they are capable, intelligent individuals who want to be more than a disease, and see where that takes them.
I'm sure you are right, but I must confess I've never dealt with a health care professional who had a "paternalistic attitude". I have no doubt they exist, but I've yet to encounter one. I think I'm just lucky. We'll see what happens when I go up to Madison next month. LOL!
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At the afterschool with screaming kids on the other side of the door, so excuse possible incoherent response.
I don't know what the average age of 60 stat really tells us. That may sound contrary, but if you spend a week on dialysis, are you included? I ask because dialysis would be the only option offered for most people beyond a certain age. Young people will be more likely to be off and on dialysis through the years. Also, stats are one thing and public perception is another. With the PSAs I am not sure what it is that you would see as the ideal, MM. Because the poor little bald children from St Judes want money. Fairplay, the poor little dialysis child already gets their treatment funded by the government. If it's any consolation (and I know it's not) those social marketing campaigns for heart disease and AIDS don't really work either. AIDS is also a disease of predominantly minority communities. I can only remember seeing one PSA for diabetes and that was for type I with Mary Tyler Moore. If you are hearing more down in Chicago then that is most encouraging, provided they have not made a hash of it with scolding lectures.
AARP is politically powerful was all I was really saying. I have been receiving their fliers ever since I can remember, probably because I was on Medicare from a young age. Boy has THAT got old by now, no pun meant.
The paternalism is less an individual problem and more the product of both a culture that elevates doctors to a godlike status so that we are taught that they know better than us, and a consumer culture that says we are paying for this, we expect someone else to do the work for us. The paternalism is evident in our low home hemo rates and the lack of expected independence. However, you must be doing something right if you've not had condescension raining down upon you from transplant surgeons. :)
I just see the awareness campaigns as having very limited value when it comes to quality of life. Unless we want pity. Which we don't! I think we all agree there. I don't know, do we stand to improve quality of life somehow from those often-nauseating PSAs?
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If I never said another word on this forum, I suspect that no one would comment on the long post I made a few posts ago. There is a world of experience by the members of this forum. If I am to engage knowledgeable people on the Quality of Life in those dialysis centers, I need to know everything there is to know, your ideas for improvement, etc. Advocacy is a bitch. Piss and moan or help! If there is no help, I quit!
gl
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gl, I read your long post and didn't comment because there's nothing there that I'd disagree with.
Cariad, there is a lot of conversation within the "dialysis community" (such and umbrella term) about how to define and then quantify quality of life. Is it enough to just meet the minimum standards regarding adequacy, anemia controls, etc? I'm sure you have imagined what life would be like on dialysis, raising two young boys. In such an imaginary scenario, how would you define for yourself a good quality of life, and how do you think you would attain it?
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My dialysis fantasies have pretty much been limited to trying to picture what it will be like in those last few moments of refusing dialysis, slipping into a coma and passing away. I know that's harsh but my dialysis experiences have been completely atypical (I've never been inside a dialysis clinic, I've never had needles used on me, or at least I do not remember them 'testing' my fistula as my records claim) so it truly is not something I think about with regards to myself. I think the trouble with awareness campaigns is that you need to decide what the goal is, and kidney failure is nothing if not hugely varied in treatment. When I attempted to do it a bit of justice for public health, I found myself at a loss as to what to suggest. You cannot really condense kidney failure into a 30 second spot. If you horrify people with images of suffering on dialysis, they are immediately going to jump to transplant as the answer. If you talk about how fantastic life on dialysis can be, you run the risk of disillusioning potential live donors. I personally suggested (just for the purposes of my silly little paper) that it really needs something more like a reality show or lengthy documentary to cover all the bases. Aside from that, if you don't convince people that there is something that they can do then they will ignore you, but what do we want from the public that will improve the quality of life for those on dialysis?
I think Bill's answer was brilliant, I really do. Quality of life is individual so I really think that campaigns and trying to dissect the concept and nail down a definition that will suit everyone is sort of futile. I equate quality of life with being happy, and that mostly has to do with everything I'm doing that has nothing to do with the daily minutia of staying alive. I periodically get contacted by my original transplant hospital with a massive quality of life survey - I've never filled them out. It's just too overwhelming to answer all of those freaking questions and I found myself getting upset reading through the questionaire. If I wasn't thinking about the transplant I was happy, but being asked to think about how it may have affected my life, how it may have robbed me of things that I was not actually missing in that moment until they came along, it irritated me. So, I guess I cannot be much help. Dialysis is not my realm anyway. There are so many people on here who can offer insight, I am just really not one of them (though I thank you for being polite enough to ask my opinion). I only responded (not that I am not enjoying the conversation, because I am) because you seemed bothered by the idea that kidney disease is ignored by the country because it strikes older minorities, and I do not see that as the case. I think it may be more a matter of we have too many options for our own good. Everyone can understand Give us money or the cute little bald boy dies! It is more difficult to keep someone's attention long enough to explain that we do have options, but they come with a lot of strings, but some people do very well, and no transplant is not always an option, and transplant is not a guarantee..... and so forth. I think your answer will have to come from those on dialysis or it will be like asking men to enlighten our country's leaders on women's reproductive health care needs. And that would just be silly! ;D
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I think your answer will have to come from those on dialysis..
You're right, hence this whole thread. Unfortunately, though, most patients don't get to set the parameters for their treatments so don't really get a voice in determining what their quality of life will be and how they will attain it, except for cases where there is a clear choice between home dialysis and inclinic dialysis. Other than that, there is the cookie cutter, one size fits all template set in stone by the providers and the payers, and if that size happens to fit you, then your quality of life will be better than if that size doesn't fit you. But if it doesn't fit you, then what do you do?
What do the Breast Cancer walkers or any illness group want from the public that will improve the quality of life for those with cancer or those with ESRD? Money. Money for research into better machines, perhaps. Money for the development of better drugs to control anemia. Money for nicer clinics with better trained staff. I'm not really sure what people who participate in charity events think is done with the money they raise, but they must think it is going toward improvement of some sort in some way.
I suppose what also is desired is attention so that someone with said malady will approach their Congressperson and push for more funds.
I am not the only poster who has noticed the difference in the attention given to cancer as opposed to the attention given to dialysis, and I am just guessing why that might be the case. Does anyone here think there is greater public awareness of dialysis and ESRD than of cancer or AIDS? Cariad, do you have any hypotheses that might explain why, in the monthly magazine I receive from our hospital AND the daily local newspaper, there is a list of support groups for the following...
http://delnor.com/Workfiles/Classes/Delnor_Support_Groups_2012.pdf
I see nothing for renal or dialysis patients, and I am not sure why. I actually did call and ask, but I got no coherent reply.
As for defining quality of life as being an exercise in futility, you may well be right, but if we as an affected population want to lobby Congress for any changes in current dialysis practice, then we need to be able to tell them why we want changes and why we want the FDA to fast track certain new technologies and why we might want a mandated minimum hemoglobin level and why we want practice to be dictated by our nephs and not by Kent Thiry. Unfortunately, Congress is mired in red tape and politics, and they want more than just an airy fairy idea of what a good quality of life should look like for a patient on long term hemodialysis. And Congresspeople watch TV and read the papers and surf the web, and a good PR strategy can change their perception and knowledge of dialysis.
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If I never said another word on this forum, I suspect that no one would comment on the long post I made a few posts ago. There is a world of experience by the members of this forum. If I am to engage knowledgeable people on the Quality of Life in those dialysis centers, I need to know everything there is to know, your ideas for improvement, etc. Advocacy is a bitch. Piss and moan or help! If there is no help, I quit!
gl
Sorry Gerald!
I bought a car last week, a house yesterday, and I've got exams today. I'll go through it when my head stops spinning!
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MM, that hospital does not perform transplants, right? That was a rather arbitrary list, but then that will be the case with any list of hospital support groups. Far as I know, both hospitals in town that perform transplants also provide transplant support groups.
I actually do have a theory for why dialysis support groups are a rarity (at least through a hospital) - people who report to a unit 3x a week probably don't want to make an appointment to see these same or similar people in their off hours. I would think that dialysis does eat up so much time and effort that the majority of people would quickly drop a support group because it's just another appointment. And I could not agree more with Bill Peckham about how I feel about another appointment and having to trudge through the details of how I've come to this point in my life. IHD is such a great solution - it's open to anyone with an internet connection, which is more people every day, and there are no appointments, no obligations to tell your story, no facilitator who interrupts to try to get at some deep psychological underpinnings of your emotions. Yet, when we want that sort of response here, we just have to ask for it.
I think what people on dialysis need is pretty much what the rest of us need: dignity, autonomy, friends to forget our troubles with, and a feeling that we make a difference in the world somehow. We cannot change the fact that people who need dialysis need it. I think solutions like the artificial kidney are on the horizon, but that is not going to improve quality of life for those on dialysis now.
Cancer and AIDS have a higher sense of urgency than renal failure. Cancer is a greater killer than renal failure, and AIDS captured the public imagination so to speak when it became somewhat like McCarthy's Red Scare. People lost employment or were dropped from their health insurance on suspicion of being homosexual, hemophiliac children were ostracized - it became a devastating civil rights issue almost overnight. Do you remember when AIDS was originally called Wrath of God Disease? The drama of that disease was hard to ignore.
Dialysis did once have all of the drama anyone could desire. We received much attention, and ultimately much reward, in the late 60s and early 70s. I am fairly certain I've said this before, but the problem as I see it is what your typical individual who has no current connection to renal failure will think: Let me get this straight. They already get their medical bills paid for by the government while I struggle to pay my premiums but that's not good enough for them, now they want what? Some nebulous quality-of-life improvement? Who is coming to assess my quality of life and then paying to improve it? There are finite resources in any country, so how can we honestly argue that we need money to be more comfortable when the paranoid schizophrenic is turned out on the streets by the medical system. (Or whatever underrecognised condition). I think people on dialysis would do well to find any possible win-win scenarios and then aggressively pursue them. Does home dialysis save the system money? I think we should have self-care clinics which would free up the staff to attend to those who truly cannot do it on their own. Aranesp, well, the problem there is that public health is useless at tailoring treatment, and there will not be a single number that will cover everyone. The deaths from too much Aranesp were real. What could kill me would be fine for someone else, so I just think we need to stop handing medical care over to for-profit interests.
We need socialized medicine. There, I said it. :)
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Cariad, thanks for your post. I will alert the group of people with whom I have been speaking lately to your comments. There is a pervasive feeling that "dialysis is broken", but you seem to imply that it isn't, really, especially if you get rid of the one size fits all idea. Everyone seems to already know this, yet the process of dialysis delivery seems virtually unchanged. And with almost one in two Americans suffering from a chronic disease, I'm not so sure that the whole idea of quality of life is quite as airy fairy as you may think.
BTW, I was not looking for a transplant support group. I was interested in the fact that there were no such services for dialysis patients, and the hospital does have a dialysis cliinic on its campus. I understand that many dialysis patients may not want yet one more appointment with any group, but there are others who may have families that might like to learn more or might benefit from, say, the relaxation classes that are available to the cancer patients at their THREE separate cancer care facilities. And what about home hemo or PD patients who don't dialyze in clinic? Maybe THEY would appreciate the opportunity to meet other D patients in a nicely kitted out building like the cancer group does.
I have one friend who has AIDS since the 80's, and he's still around. Not much sense of urgency there. And I had another friend (well, she was my mom's friend) whose sister had been battling cancer for decades. The sister is still alive, but my mom's friend is not. Again, not a lot of urgency. I am not sure that urgency is the only criteria to be used in determining whether or not a particular malady is worth "supporting". I would think that the very very long battle that is CKD/ESRD needs even more supplies and ammunition.
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Wait a minute, where did I say that dialysis was not broken? I'm saying that it will not be perceived as broken, or not broken enough to warrant further funds. And yes, AIDS was once called 100% FATAL and it struck little innocent children along side those perverts who obviously got what was coming to them. (better clarify that the last bit is sarcasm). It takes a bit of time for people to start seeing these changes, that hey, yeah, that person who was supposed to be dead 20 years is still here! That is happening. You know what the complaint among many AIDS patients is? That most American funding for AIDS gets sent to Africa. It appears that things are tough all over.
What group are we talking about, because I have no interest getting into an argument with people outside this site or coming off like I fancy myself some expert. I am truly confused as to why my comments should be passed along to some outside group. I have not been on dialysis in over two years and it was not in a clinic setting. I am just speculating which is what I thought you asked me to do, about why there were no support groups for renal or dialysis patients. Well, transplant support groups are for renal patients. As are lupus support groups and I assume support groups for people with an insulin pump. (That I have to admit struck me as odd, but then I know nothing of insulin pumps.) This is what I'm talking about! Renal patients are a heterogeneous group so you get people focusing on one sector - people united by a common cause of renal failure or a common treatment.
We have IHD and there is the hopeline through Renal Support Network, and one of our members started her own dialysis support group. I just don't see support groups as being the ultimate answer, but then I've never attended one. I understand that people on home dialysis may want a support group, or maybe they don't. If there is a call for one, then what is to stop you or anyone else in your area from starting one themselves? Wouldn't that give you a great feeling of accomplishment, starting something like that up? I know at Cedars, their support group was over the internet because the social worker there felt that most of the pre-transplant patients (liver, not kidney) were too poorly to make it to a physical location each week.
I don't think quality of life is airy fairy, I think that we are all competing for a larger piece of an ever-shrinking resource, and I am too much of a realist to think that after securing Medicare for all dialysis patients while so many others cannot access life saving or quality-of-life saving treatments, that we can expect that people are going to think we are somehow more deserving of further funds than the cancer patient, the mentally ill patient, the heart-disease patient, and so on.
I've been a renal patient my entire life. As my surgeon has said to me on more than one occasion "you have been there for the entire history of renal replacement therapy". I did my best to answer these questions and now it seems that my responses have made me come off as some sort of status-quo promoting enemy to dialysis patients. I am going to just have to leave this here and in future think more carefully as to whether I actually have anything of validity to say before I being typing.
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A quick :twocents; Your comments are valuable because you have had a unique journey with this disease. You have experienced more than most patients and I keep learning from you. Don't you love proving the doctors wrong and still loving life 20 years later?
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Cariad, this discussion has sort of veered in a weird direction. I do not intend to pass along your comments to some "outside group", but I have entered into some interesting discussions with various people in various groups on various sites who are interested in the whole quality of life issue, and I thought your comments might be of interest along with all of the other comments posted on this thread. But those people peruse this site anyway, so your comments will be read without me having to call extra attention to them, and they will be read with interest simply because you are a renal patient who is particularly astute and articulate.
I do not really care about support groups because IHD is enough for me, but one poster did ask why other diseases get more popular attention than ESRD and dialysis, and I was just speculating. I have not taken any public health classes or have entered into any discussion of this topic with anyone in academia, so I know nothing that would give real answers, but that hasn't stopped me from wondering out loud and offering some possible clues.
You are absolutely correct that there are ever decreasing resources for an ever expanding problem, and you are correct in wondering how we can expect people (ie, Congress) to provide more funding for one group while other people need funding, too. Part of the answer to that is the fact that ESRD is unique, that it is covered by Medicare while, say, cancer is not. As such, we need to make sure that these funds that ARE allocated to dialysis patients are used wisely. Patients who do not get good dialysis are hospitalized more frequently, and as I've said before, it is the hospitalizations that rack up the bills. We as a nation are not good at spending a bit more now in order to avoid spending much more later, so it is a matter of trying to convince certain parties to spend more in, say, providing longer inclinic treatments, providing more clinics that offer nocturnal hemo, providing more programs for getting people to dialyze at home if they can, and providing more staff so that people don't have to skip a day of dialysis which, statistics show, is when most D patients have a higher risk of cardiovascular events and land in the EXPENSIVE hospital. Staying out of hospital is one good way to improve anyones quality of life.
Defining good quality of life and providing ways to attain it doesn't have to require extra funding for the reasons I've just stated. The Davitas and the Fresenii of the world are Fortune 500 companies and can afford to offer more dialysis on more days or over more nights for those patients who feel that their quality of life would be improved with more dialysis. The money is there, it's just that these companies prefer to keep it than investing it in their patients' day to day treatments.
Everyone's comments are valuable. I talk alot about dialysis despite the fact that I am not yet on it, and you talk a lot about it despite the fact that you don't have experience with longterm, chronic hemodialysis treatment. I've been a renal patient for over 20 years now, but my experience with this disease differs from everyone else's. Perhaps I am the one who shouldn't be posting here as I have no real life experience with dialysis. Perhaps I should not be quite so interested in others' experiences and thoughts; perhaps I am just too intrusive.
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I haven't read all of these, but I keep starting to reply and then get sidetracked. I wonder how much of it depends on how well we can each redefine a good quality of life.
I look at people who I think have a poor quality of life, like the homeless and quadriplegics. Compared to them, even with kidney failure, I think I'll have a pretty darn good quality of life, even on dialysis. If I look at a healthy 20-year-old who's off climbing mountains, taking exotic vacations, and has a personal chef and someone to clean her house for her, then I have a cr*ppy quality of life even now. It's all relative.
I think it all goes back to attitude and whether I can redefine what "good" means as my body's abilities change. If I continue to only define "good" as being that 20-year-old mountain climber, then I'll have a poor quality of life on dialysis. If I can change my definition of "good" to mean I can still enjoy the little things, if I can find internal happiness instead of needing external stimuli, then I think I'll have a good quality of life on dialysis. Time will tell....
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my theory on why cancer gets much more attention and funding than ESRD is because there are more celebrities that have cancer or had cancer and died from it than ESRD. Sounds silly i'm sure, but I think this does play a role. If celebrity X gets cancer and announces it on the Today show, gets a reality show following him through his struggles with cancer, and then ultimately dies, then that gets the sympathy and awareness of all his fans, people who watch the Today show, etc.
I have yet to see any celebrity be diagnosed with renal failure and go through dialysis for any length of time so that the world can see what he has to go through. There have been a few celebrities that have had kidney failure, but they seem to get transplants relatively quickly and then they move on with life.
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I don't think cancer treatments (infusion therapies) and dialysis are the same animal at all. What exactly would be accomplished if an international celebrity had to use dialysis for a prolonged time? How would that change the experience of everyone else who uses dialysis? Research offers the hope of improved CKD care but that takes time. As someone who donates my limited resources to research I can't help but think that if everyone who wrings their hands about the state of CKD care threw in a couple bucks to support research then maybe we would actually get somewhere (here (http://www.nwkidney.org/donate/how/vision_KRI.html), here (http://kri.washington.edu/index.php?option=com_content&view=article&id=48&Itemid=50)). But I digress.
You know what makes dialysis hard? Unpredictability. If you don't know what is going to happen today when you go for your treatment you will have a diminished quality of life above and beyond whatever the clinical experience. Will you feel as you hope after treatment or will you be left feeling like you have a 24 hour flu? Is it going to be a painful torment for 240 minutes or a dull four hours watching TV? Are your interactions with staff and other patients going to be enjoyable, respectful and supportive? Or are you going to be infantilized and stressed? That experience of unpredictability leads to what I now understand to be ego depletion (http://ihatedialysis.com/forum/index.php?topic=26363.0 (http://ihatedialysis.com/forum/index.php?topic=26363.0) ) That ego depletion is what makes hard become impossible.
We could improve dialysis the most by addressing the two most unpredictable issues for the vast majority of conventionally dialyzed patients (aka 90% of all US patients): cannulation and transportation. For people who rely on funded transportation their commute can be 15 minuets each way or two hours. For people who dialyze at a unit with a high staff turn over cannulation can be as varied as the weather.
My quality of life would be improved with fewer appointments and clinic visits and deliveries and tests but I know the reasons for the requirements though I think there should be opt out options. I think we should be very careful before we increase the treatment burden no matter how well intentioned the new tests/paper work/appointments are.
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I don't think cancer treatments (infusion therapies) and dialysis are the same animal at all. What exactly would be accomplished if an international celebrity had to use dialysis for a prolonged time? How would that change the experience of everyone else who uses dialysis? Research offers the hope of improved CKD care but that takes time. As someone who donates my limited resources to research I can't help but think that if everyone who wrings their hands about the state of CKD care threw in a couple bucks to support research then maybe we would actually get somewhere (here (http://www.nwkidney.org/donate/how/vision_KRI.html), here (http://kri.washington.edu/index.php?option=com_content&view=article&id=48&Itemid=50)). But I digress.
I was just saying that if the same amount of media hype that is given to celebs with cancer(patrick swayze, steve jobs, farrah fawcett, giuliana rancic, etc.) would be given to celebs that have to do dialysis, than it would make society more aware, and possibly, more likely to donate.
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I know what you are saying, justme15. Also, I am a Nosey Parker and would be interested in knowing how a famous person copes with dialysis. People magazine is filled with stories about celebs who are facing health problems. I mean, I don't even know who Giuliana Rancic is, but apparently she has breast cancer and is expecting a baby via surrogacy, and I know this because I see this story everywhere I go.
I've always wondered about those celebs who have received kidney transplants...how many of them were on dialysis? George Lopez? Alonzo Mourning and the other NBA player who had a tx because of fsgs? And the singer, Natalie Cole; she abused drugs and destroyed her kidneys, and she got a tx. It does seems we hear about tx but not about how/if these folks were ever on dialysis.
What would be accomplished if some celeb had to dialyze for a prolonged time, and how would that change the experience of everyone else? Well, how does the publicity that surrounds anyone with a health issue change the experience of anyone/everyone else? Maybe justme is right...there must be some advantage to raising awareness, even if it is just to scare people enough that they go get their renal function checked.
I'm not a political ally of Dick Cheney, but I found it very interesting hearing him talk about his LVAD. I had no idea such a thing existed, and he was very open about it, even showing it off. And now he is being very public about his tx. Maybe hearing his story will spur some young biotech engineer to create new devices, and maybe if said young biotech engineer saw people languishing on dialysis, he might do the same. Or some venture capitalist might hear the story of how the famous star Bradley Pitts was diagnosed with renal failure and had to begin dialysis, and he might be Bradley Pitts biggest fan (or might think his wife, Angela Jolly, is particularly hot), and he might want to invest in some new biotech company started by a young engineer, and the story might go on from there.
I can certainly see how unpredictability would make dialysis hard, so what can we do to diminish that? Do we redirect more efforts toward home dialysis, thus removing some of the variables (staff attitude, other stinky patients, that sort of thing), or do we put more money into the clinic environment, enabling each dialyzor to have his/her own personal space sort of like an ICU unit with monitors so that patients can have privacy but staff can still see everyone? Do we push for better trained staff? Dialysis techs are the dogsbodies of the renal world, so it's not always wise to expect too much of them, sadly. Do we try to get LDOs to pay their people great wages with great benefits so that there might not be so much staff turnover, thus removing another variable (everyone's uncle is allowed to cannulate you).
I don't know what to suggest about transportation, although I'm tempted to say that a high profile celeb might increase donations so that some centers could buy their own minivans and hire drivers for this purpose. But I do realize that in a goodly number of cases, patients have to be transported by ambulance. I'd love to hear some ideas to solve the transportation problem. When my mom first started D, she was picked up but got so sick of having to wait for transport that she eventually just drove herself.
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Due to my medical issues, my answer is a little different As much as I tried to be normal and keep active during dialysis by trying to be a full time college student, diabetes did not agree with dialysis. Then other issue wit diabetes arose, had to quit classes on a few occassions and finally was to the point I was in the ER or Hosptal on 2 to 3 times a week to where everyone knows you there (and still do!) That was not a quality of life I wanted nor liked, but was in a way use to. Now with a transplant the quality of life is better, but still not like it use to be, but a much better situation even with theissues I have had post tx.
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Dear Bill Peckam:
Wanna try Infusion and dialysis at the same time? Do you really think a four hour stint in a chair for Infusion is not similar to a four stint in the same chair for dialysis? Really?
Gerald Lively
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Peckham, I read some of your website. It was an interesting read. I wonder how they will handle dialysis when they "fix" Medicare.
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Gerald, I take the point that you are making with regard to Bill's comment, But the difference that I see with chemo. is that the treatments are of a limited duration, whereas dialysis treatments, for most people, are, unless they have a transplant for life. I try not to think about my days sitting in a dialysis chair, day in, day out, year in, year out, but that is in all likelihood, my future. I have been on dialysis this to e around, for nine years, I' m 48 years old. having received immuno-suppression, there is a strong likelihood that that chemo. chair may be n my fixture too.
I am one of the fortunate ones, since I am doing home dialysis, but it is still bloody hard to fit into my life. just today, I am juggling around, trying to fit into'my hisband's schedule, my son's schedule, tryi g to look after my body by going to the gym, and taking my son to his doctor's. appointment. having messed up the pri e for the machine, I have now run out of ti e, and am goi g to have to juggle around some more to fit it in later. so,even though I am at home and that dialysis experience is so much better than in-unit, it is still a complete pain in the place where the sun doesn't. shine.
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Dear Bill Peckam:
Wanna try Infusion and dialysis at the same time? Do you really think a four hour stint in a chair for Infusion is not similar to a four stint in the same chair for dialysis? Really?
Gerald Lively
Do you really think dialysis amounts to just sitting in a chair for four hours? Since you are willing to do infusion but not dialysis I have to think you understand that dialysis is very different.
Peckham, I read some of your website. It was an interesting read. I wonder how they will handle dialysis when they "fix" Medicare.
If you mean the Ryan/Romney plan - that would profoundly change the provision of dialysis for the worse.
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Bill, I don't know really anything about the Romney/Ryan plan as I suspect that it would only serve to depress me, so could you tell us more about how you see that plan making things worse for dialysis patients? I've wondered about this but have not researched it because I value my sanity.
Amanda100wilson, other than the massive timesuck that is dialysis, it sounds like you have a pretty normal, hectic life...being a wife and mother, trying to keep up with a husband and a kid. Since you see dialysis as always being part of your future, and since dialysis sessions are a "normal" part of your life, how do you view your own quality of life? How do you physically feel? I don't know, but I suspect (maybe wrongly) that if you feel reasonably well, it is easier to have a good quality of life on dialysis. If you always feel like hell, your quality of life won't be very good whether you are on dialysis or not or have some other chronic disease. Within the confines of your dialysis schedule, can you think of anything that would improve your quality of life, however you may define it?
Or is the whole discussion just a load of old cobblers?
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I think Quality of Life really boils down to one's attitude. And, what you "put" into it, you get "out" of it. Just my opinion, short sweet and simple ;)
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I think Quality of Life really boils down to one's attitude. And, what you "put" into it, you get "out" of it. Just my opinion, short sweet and simple ;)
I agree that frame of mind can make a difference between heaven and hell, but you can be the most positive person on the planet yet still feel devastated because your anemia isn't controlled or your bp always seems to bottom out or you just always feel physically terrible. I know that my mood is crap whenever the fatigue is really pervasive.
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I think Quality of Life really boils down to one's attitude. And, what you "put" into it, you get "out" of it. Just my opinion, short sweet and simple ;)
I agree that frame of mind can make a difference between heaven and hell, but you can be the most positive person on the planet yet still feel devastated because your anemia isn't controlled or your bp always seems to bottom out or you just always feel physically terrible. I know that my mood is crap whenever the fatigue is really pervasive.
:grouphug; :cuddle;
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Just another random thought...
Yesterday, I was getting a haircut, and I was having a conversation with one of the ladies that works there. She is originally from India, and she is a vegetarian. Now, I love Indian food and have done for decades, so we talked about food. I had told her about my kidney condition because I had asked her if she thought my hair was getting thin ("no", but I'm not so sure) and explained why I was asking. So yesterday, she asked me if I had any food restrictions. I told her about the whole K and phos problems and, and being vegetarian, she was appalled to find out that I couldn't have such staples of the Indian diet as, say, chickpeas, lentils, tomatoes, yogurt, mangoes, potatoes, etc. She actually said, "I think I would die if I couldn't eat those things!"
She really had trouble wrapping her head around the idea that what for most people is a "healthy" diet, to someone like me, it is not.
She then asked if I had to take a lot of medications, and I told her that I take close to 25 pills a day. She found that to be very shocking.
So, she probably went away thinking that I have a diminished quality of life. But after 7 years of the diet and the pills, it's just a part of my life and I don't think much about it anymore. I don't think these things give me a poorer quality of life, but I'd bet that SHE would think so.
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Here's another random thought....
So since I had vacation today and was just tootling around the area doing errands, I decided to stop in to my old dialysis clinic. The staff there was genuinely happy to see me. Almost all of the techs, nurses and clinic manager were the same as six months ago. I went in at the tail end of the second shift so I didn't recognize any of the patients. They were really happy to see that my fistula was looking good and I do have to admit that I bragged to them that I can stick my fistula first try every time. But then like Kid Rock says, it's not bragging if you can back it up LOL
I did have to say that while I was happy to see the staff and visit for a minute with my old friends, I did feel sorry for the patients. I don't miss those days at all.
So I guess all I have to say from that is that quality of life is so hard to quantify for ESRD patients because it means so many different things to different people. Like Bill Peckham said, if you're in center and dependent on transportation, than quality of life to you means a good stick and not too much time waiting around for iffy transport. But if you have no issues with those aspects, then quality of life to you may mean something entirely different.
I think we have to develop a Maslow's hierarchy of needs for the dialysis patient. ;D
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Gerald Lively; just a quick not regarding infusions. I've had serveral types, including 8 hour chemo infusions. It is a walk in the park compared to dialysis. I could push the pole with the chemo and walk around, go to the bathroom, just stretch my legs. Totally different than being connected and not moving at all. And I could snack or even have a meal. There was more freedom than when on dialysis. I realize you had both at the same time and that must be tough. I do wonder why they had you do them together. Wouldn't the dialysis interfer with the drugs going into you? Just wondering.
At 71, it is your choice never to do dialysis again. If you were 25, do you think you might see the future differently? I'm going out kicking and fighting -- too many things to do and see. And I am much closer to you than the 25 yr old. :thumbup;
Quality of life is so different with each person. My husband has diabetes. We have to fill out insurance forms every year to get a discount. The final question is "How do you rate your health". My husband put "poor"; I put "good" (transplant, bone disease, fibro, spinal stenosis, arthritis in every joint) . It depends on how we look at things. He is an Eeyore and I am a Tigger!! lol
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Oh, I am so totally an Eeyore... ::)
I gotta find the Tigger in me.
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Yes, during infusion it is possible to walk around. That is hardly the point. Both have similar time requirements, require needles and both dominate your awake time. The issue is not "which is worse", it is the environment in which infusion and dialysis take place. My point has been that these activities are sufficiently similar for the purpose of comparison.
The question that begs to be answered is, why are most dialysis centers more like a large garage than the more positive atmosphere of most Infusion Centers?
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My infusion center looks almost identical to the dialysis center. I do believe it is just point of view. One can compare them; but each has their own view. Mine is different than yours. Simple as that.
Moosemom--- Eeyore :rofl; I think you are more Tigger. In person you are bubbly and so much fun. This is your safe place to put your "what if's". Our dark moments can be written out here and it is safe. You are a thinker and like to get everything out and in front of you. Maybe you are the wide owl in the tree! :2thumbsup;
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The question that begs to be answered is, why are most dialysis centers more like a large garage than the more positive atmosphere of most Infusion Centers?
Have you visited many hemodialysis units in the U.S.?
8)
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Moosemom, now that I am doing home HD, I feel that my quality of life is pretty good, but then I am comparing it against my quality of life that I have had for the past years before that when I was on PD. Quality of life on PD was not always poor, but towards the end, when I was holding onto 20 lb of fluid, having chronic sleep issues because of sleep apnea (excaserbated I suspect by the presence of the dialysis fluid) and difficulty breathing from the pressure of dialysis up against my diaphragm. I used to drag myself around, unable to complete tasks because of lack of energy, and feel nauseated most of the time. oh, by the way, during all of this my Kt/v was great! (showswhat acrock of crap that measurement is!)
The main impact on my Q of L now, is that I feel great, but now am constantly doing a juggling act to fit dialysis in, and do the bare minimum when it comes to caring for my home. How those who work, manage, I really don't know and I must congratulate those who do vfor staying so positive.
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Yes, during infusion it is possible to walk around. That is hardly the point. Both have similar time requirements, require needles and both dominate your awake time. The issue is not "which is worse", it is the environment in which infusion and dialysis take place. My point has been that these activities are sufficiently similar for the purpose of comparison.
The question that begs to be answered is, why are most dialysis centers more like a large garage than the more positive atmosphere of most Infusion Centers?
There are well over 5,000 Medicare approved dialysis units in the US. I suspect you are comparing one built in the '80s with an infusion clinic established in the last decade. I've dialyzed in scores of units all over the world, in my experience the vintage of the unit has more to do with its look than any other factor. NKC's newest unit in Renton is nicer than the infusion clinics I've seen (3).
For the purpose of comparison I think you have to look past superficiality to what is being done. Circulating the blood outside the body and profoundly changing the body's homeostasis vs an infusion.
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Moosemom, now that I am doing home HD, I feel that my quality of life is pretty good, but then I am comparing it against my quality of life that I have had for the past years before that when I was on PD. Quality of life on PD was not always poor, but towards the end, when I was holding onto 20 lb of fluid, having chronic sleep issues because of sleep apnea (excaserbated I suspect by the presence of the dialysis fluid) and difficulty breathing from the pressure of dialysis up against my diaphragm. I used to drag myself around, unable to complete tasks because of lack of energy, and feel nauseated most of the time. oh, by the way, during all of this my Kt/v was great! (showswhat acrock of crap that measurement is!)
Yes, I have heard many here on IHD say the same about Kt/v. The numbers don't matter so much when you feel so unwell.
The main impact on my Q of L now, is that I feel great, but now am constantly doing a juggling act to fit dialysis in, and do the bare minimum when it comes to caring for my home. How those who work, manage, I really don't know and I must congratulate those who do vfor staying so positive.
I would guess that just feeling so much better has got to improve your QOL even with the more hectic schedule. I have a home to take care of, but I don't have kids to look after, and doing both PLUS dialysis has got to be tough. If you've managed to keep your sanity, you deserve a prize!
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It is difficult to help those who do not want to be helped, difficult to change those who relish the status-quo.
If those who wish to argue the point, stay with what you have but be advised, there is no light nor is there an the end of your tunnel. I have seen how good it can be, perhaps you have not.
gerald
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Gerald, I'm not sure I understood your last post...
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"Have you visited many hemodialysis units in the U.S.?" Peckam
Sitting in a chair, virtually strapped in for four hours, unable to get the attention of anyone except a "tech", discussing your medical problems with a doctor when he/she comes around once a week where anyone can listen in, time getting there and back, surly nurses, etc. It's all in the record of my ongoing posts.
Now that I am free of dialysis, I owe someone something. Although I have finished chemotherapy, I am about to enter the radiation phase - about four or five weeks. My wish is not to walk away from what I understand as exploitive profit-oriented dialysis centers and do something for the patients beyond the dialysis center I was at.
It took me only one minute to find a photograph on the internet of dialysis in a better enviroment than I was in. I took Peckham's comment as a challenge of credentials, the first step towards a non-productive agrument. I am not a social worker. I am the guy who gets it done, which is what I did for a loving.
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OK, Gerald, thanks for the explanation. My apologies; it's late and I'm distracted. Again, thanks.
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"Have you visited many hemodialysis units in the U.S.?" Peckam
Sitting in a chair, virtually strapped in for four hours, unable to get the attention of anyone except a "tech", discussing your medical problems with a doctor when he/she comes around once a week where anyone can listen in, time getting there and back, surly nurses, etc. It's all in the record of my ongoing posts.
Now that I am free of dialysis, I owe someone something. Although I have finished chemotherapy, I am about to enter the radiation phase - about four or five weeks. My wish is not to walk away from what I understand as exploitive profit-oriented dialysis centers and do something for the patients beyond the dialysis center I was at.
It took me only one minute to find a photograph on the internet of dialysis in a better enviroment than I was in. I took Peckham's comment as a challenge of credentials, the first step towards a non-productive agrument. I am not a social worker. I am the guy who gets it done, which is what I did for a loving.
I think you are thinking of Zach and I would say that his was a fair question. Less a challenge to your standing than a reminder that you have very limited, an n=1, experience.
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My neph.has never really asked about my Q of L. I don't feel the social fa tors fit into the equation. In my discussion with my doctor regarding getting to do extended AKA nocturnal dialysis, I mentioned how difficult it is to fit life around SDHD and how I would maybe like to get a job (Yes, SDHD has made me feel well enough that I think that I could get a job) but the talk quickly turned away to how I feel well physically, how good my lab. Work is, the expense of more dialysis. I would have thought that this was an important point in the decision-making process.
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Wait a minute, Amanda....are you saying that when you approached your neph about nocturnal home hemo, your neph steered clear of that conversation, saying essentially that 1, it would be more expensive and 2, why change what's not broken? Do I have that right?
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Yes, although he did agree to consult some nephs. Who have experience of nocturnal and I steered him towards Dr Bob Lockridge in the hope that hewouldn'tgo and consult some clueless dweeb about it. I will keep you posted. I'm seeing him mid May, so I'll kep you posted. I am pretty determined to get what I want, and O have another neph. 'up my sleeve' in case I need to dispense with his services.
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Whatever works for one person is good for that person. There is hundreds of years of experience on this forum. It is interesting that one feels they know all there is to know. It just can't be possible. There are good dialysis centers, apparently Gerald Lively has only been to a bad one. That doesn't mean others are "not seeing the light"; they are also intelligent, educated patients that see a bigger picture. One of my infusions took place in a space like a storage closet in a hospital with no call buttons, no tv, nothing. But that doesn't cloud my judgement because I have been to three others that were wonderful. Different exeriences.
Don't think any one is changing any one else's mind around here. lol
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The question that begs to be answered is, why are most dialysis centers more like a large garage than the more positive atmosphere of most Infusion Centers?
Maybe I'm not following something, but isn't Gerald just trying to advocate for better dialysis centers? My mom had to utilize several different ones, an most of them were pretty dreary places with disgruntled employees. Not all, but most of them.
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Yes, I was advocating improved conditions in dialysis centers. Infusion centers were an obvious comparison. It doesn't matter any more, I have decided not to advocate for dialysis R & D nor will I form an advocacy group here and on the Chico State campus to push our retiring Congressman for one last grant. I had forgotten how a constituency can complain about help on their behalf and I am much too old for this crap. I have a great record of community organization through the Community Action Agency here, where I was once the Executive Director.
No more of this. I retired from all this once. Find someone else.
Gerald
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Aw GL nobody is complaining about help on our behalf. But the whole discussion just shows that its not as simple as changing surroundings in Dcenters, neither is increasing time on D so we can feel better for a whole of 2 hours a week. But I'm sure there is room for improvement on the decor, and instrument, and staffing front in quite a few D centers.
love Cas
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I thought people were expressing their own opinions and experiences. I apologize if you took any of my posts as anything other than my own thoughts. That is the best part of a group; being able to discuss, disagree and come together. There are many here that are huge advocates for any and all things kidney related.
I agree with cassandra -- very well said.
Stay and enjoy good discussions. Explain to us how you are advocating for improved conditions so we know more of where you are coming from. :thumbup;
And, now, back to "Quality of Life"............................
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I can see that I don't belong here.
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This talk of infusion centers (or confusion center, as my brothers and I called it when my mom was going) has been helpful. Maybe dialysis should be more like an infusion center. They didn't ask about my Mom's quality of life, or her level of habilitation or rehabilitation needs. They gave her the antibiotics and she left.
Usually dialysis is compared to skilled nursing facilities. Because the payer mix is similar (constrained by a primary government payer) and both groups are seen as old and sick, requiring expensive care 'til their death. I think when people like Allan Nissenson talk about quality of life they mean it in a nursing home sense. They imagine that DaVita should be as responsible and thus involved in your quality of life as a nursing home is responsible and involved in their charge's quality of life.
MM why should dialysis providers be held accountable for dialyzor's quality of life? Is it in our best interests for them to be held accountable? Wouldn't it be better to hold them accountable in the same way an infusion center is held accountable? An infusion center needs to get the job done well without over burdening those who need their services. Their job is to minimize the hardship their service inherently entails. To minimize the treatment burden.
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I can see that I don't belong here.
Yes, you do. You know you do.
CKD/ESRD/dialysis is such a varied experience. Hell, life is such a varied experience. As such, it is really hard to determine what is needed, who needs and who even wants it. For patient A, being able to do more dialysis at home greatly improves QOL, but for patient B, the idea of polluting his home with the detritus of treatments and sitting in a chair for longer is hell on earth.
The key is more "patient centered" care where it is the patient who dictates as much as possible. But that would probably cost too much money.
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MM why should dialysis providers be held accountable for dialyzor's quality of life? Is it in our best interests for them to be help accountable? Wouldn't it be better to hold them accountable in the same way an infusion center is held accountable? An infusion center needs to get the job done well without over burdening those who need their services. Their job is to minimize the hardship their service inherently entails. To minimize the treatment burden.
I don't think that dialysis providers should be held accountable for a dialyzor's quality of life, but I don't think that the way that treatment is provided should detract from it, either. Having untrained staff who can't cannulate a banana would detract from one's quality of life. Having untreated anemia would detract from one's quality of life.
I don't know anything about infusion centers, but my gut tells me that what goes on in infusion centers is not quite as complicated as the process of dialysis. I may be wrong, but I'm guessing that much more can go wrong during a dialysis treatment and that the results of such errors have a higher likelihood of resulting in hospitalization or death.
I agree that dialysis centers should minimize the treatment burden, but again, they shouldn't add to it by poor anti-infection practices or rapid filtration rates that literally break your heart and eventually kill you. Minimize the treatment burden without minimizing the number of patients' days on earth.
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MM why should dialysis providers be held accountable for dialyzor's quality of life? Is it in our best interests for them to be help accountable? Wouldn't it be better to hold them accountable in the same way an infusion center is held accountable? An infusion center needs to get the job done well without over burdening those who need their services. Their job is to minimize the hardship their service inherently entails. To minimize the treatment burden.
I don't think that dialysis providers should be held accountable for a dialyzor's quality of life, but I don't think that the way that treatment is provided should detract from it, either. Having untrained staff who can't cannulate a banana would detract from one's quality of life. Having untreated anemia would detract from one's quality of life.
I don't know anything about infusion centers, but my gut tells me that what goes on in infusion centers is not quite as complicated as the process of dialysis. I may be wrong, but I'm guessing that much more can go wrong during a dialysis treatment and that the results of such errors have a higher likelihood of resulting in hospitalization or death.
I agree that dialysis centers should minimize the treatment burden, but again, they shouldn't add to it by poor anti-infection practices or rapid filtration rates that literally break your heart and eventually kill you. Minimize the treatment burden without minimizing the number of patients' days on earth.
I agree with all of that - but why measure it by quality of life? I think this thread illustrates that the term is a distraction that leads to misunderstandings and discussion of everything but the fact that people are not doing their job or doing it poorly or doing it inconsistently.
EDITED TO ADD: And distract from the fact that the design of the "system" causes the depletion of people's volition.
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Does the depletion of a person's volition lead to a decline in the quality of that person's life? :P
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Does the depletion of a person's volition lead to a decline in the quality of that person's life? :P
Directly. However, I see depletion as a way to understand the mechanics of the situation. I'm not suggesting we develop a depletion analog of the KDQOL and reimburse providers based on the score. That is being suggested for the KDQOL.
>>>>>>------<<<<<<
I am concerned that this quality of life talk - which is suspiciously coming from all corners though it has been building for many years - is part and parcel with the talk of accountable care organizations. That quality of life is a stalking horse for accountable care. The LDOs want to run accountable care organizations. They want to take responsibility for all your medical care but I think that is not in our interests for the same reasons it was not in our interests for the bundle's payment period to be for the month or the year. I have deep concerns. Add to that using quality of life as a measure and the idea of an ACO run by a dialysis company becomes repellent to me.
If we judge care based on people's quality of life then providers will feel they have a responsibility to improve it, they'd be able to say they're being paid to improve it. So they could look at themselves, look at the job they do and say wow I could improve my patient's quality of life by doing just a little better or they could look at their patients and tell them, in a very understanding voice, using little words clearly enunciated, how it is that the patient is just hurting themselves and suggest ways that the patient could do a better job of having a higher quality of life.
Which way do you suppose it will go? QOL has always bothered me but it has been this conversation that has crystallized why.
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I think it would go the way of the crisply enunciated voice using little words, although slightly louder in volume. ::)
You are right, though, in that the quality of life discussion is quite prevalent. I thought it was just me. You know how when you learn a new word, you start seeing it everywhere? It's the same thing. For me, a "good quality of life" is defined at the very least by absence of suffering. Since IHD is a community of people who seem generally comfortable in discussing topics like this, I decided to ask how people here felt about the quality of their lives that are vastly intruded upon by dialysis. I was just curious. I like learning about the lives of others. And the fact that this discussion has helped you to more clearly define your own concerns is a good thing. Hopefully it has done the same for others who might read this thread.
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Uh oh, Bill...I'm afraid I have more questions. :P
You speak about "burden" and minimizing the treatment burden. I agree wholeheartedly, but I'd like to ask you how you would define "burden". I am assuming that, as seen in your signature, you are doing NHHD? That is an awfully long time to be stuck to a machine. That seems awfully burdensome when you could just pop into a clinic only three times a week for half that time and have someone else do all the work for you. I guess it begs the question of which is the greater burden, more hours spend on dialysis in a house filled with boxes and bumph in order to feel physically better OR the loss of entire days spent getting treatment in clinic and then recovering from it (but not having to spend so much time on the machine)?
When it comes to the way you receive YOUR dialysis (and this is not meant to be a question about general policy, rather, it is a direct question to you, personally), what do you see as the most burdensome aspect, and can you think of a way that would minimize that burden for you?
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I want to maximize my BF time. I want to maximize my awake hours not dealing with dialysis and feeling as well as I can feel.
My dialysis takes about 4 to 7 hours of my awake time a week. After a cup of coffee I feel about as well as I am ever going to feel most days allowing for the aches and soreness that comes from a job on my feet and spring yard work.
I was asked by a doc, via email, what my Kt/V was and I replied that I didn't know and hadn't cared this century. The only number I need to know to know how I am doing is the hours worked in the week. This week I am +40 so I am doing great.
The things I didn't always account for incenter is the time recovering from dialysis, the burden of dietary and fluid restrictions that comes with conventional incenter dialysis and the cumulative effect of hospitalizations (and the benefit of avoiding them). I've never, in nearly 22 years had a hospitalization due to a dialysis treatment (or lack there of) - the only time I've dialyzed in the hospital since I started was when I had surgery to remove the kidney with the growth.
For me, the higher dose of dialysis, not being exposed to other people's infection vectors by dialyzing at home, alone and self care (leading to volition nourishment as opposed to depletion) is how I limit the treatment burden.
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Bill, I nominate you to come up with some sort of algorhythm that accurately defines and measures "BF time" (BFt). "BF time" and "Extra Cheese Dialysis" are the two new buzzphrases of the renal community. LOL!
What does your doc have to say when you tell him you've not checked your Kt/V this century? LOL! I'd guess he's used to you by now.
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Lack of control, and the sheer exhaustion after a treatment session, defines n-unit dialysis for me. I was pretty upset when I was told that they wanted me to come in-unit prior to starting NxStage. Ultimately I'm glad that I did because now, whenever I get impatient with all that NxStage entails, I push on with the next treatment, knowing that as it goes (with the exception of NHHD) that it is preferable to in-unit.
My dialysis unit, is nice, but clinical. It is quite a small unit and new, and really not a bad environment. Each chair has a tv, although I never used it, daytime TV leaves me bored. I do not agree that nephrologists see their patients whilst they are in the chair, but I was given the option of seeing the nephrologist in a private consultation when I had finished the stint in the chair. To me, seeing a patient whilst they are dialysing, where everyone can hear is a violation of privacy.
I guess that I keep coming back toots on this thread because QofL is so hard to define. Maybe satisfaction with life would be a better measure, but even with healthy individuals, what gives satisfaction with life for one person, would not do so for another
Being in control is important to me, and I really can't stand being patronized to by medical or nursing personnel. By keeping my interface with them to a minimum, ie by doing home dialysis, allows me to do that.
Now I just need to get my time back by doing nocturnal. Relating back to what Bill said about work, I am just frustrated with how little time Ihave to get work done. From someone who previously did PD, the time given up for NxStage is still onerous. I feel much better, but every day, with the exception of the days off, is defined by when can fit dialysis in. I am also frustrated that getting to do nocturnal isnot just a simple processor saying to the neph, that I want to do so. If I had my choice, I would move to ones of those areas that have enlightened nephrologists, and who truly respect their patients intelligence and desire for self-determination of treatment modality, rather than have to work on ones who aren't.
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This has been a great discussion threat. Gerald, please stay with us, I have always found your postings helpful.
Since I started PD in November 2010, quality of life has been my most important decisive factor to stay on dialysis. Doing the dialysis at home is actually the easiest part of the process for me. I currently have no other health issues so I am lucky, I know.
My biggest issue is lack of control over my own life, even on home PD. I personally find it very hard to be forced to have blood work done every 4 weeks, since I have severe needle phobia which seems to be getting worse with each new enforced blood draw. This is a treatment burden that is very hard to bear for me. It isn't just the pain of the blood draw, it's the feeling of the needle going into my arm and the feeling of being at the mercy of the dialysis center. I know regular blood work is necessary, but there should be a little leeway for individual patients - I feel like a square peg that is being hammered into a round hole without any consideration for my person. Needless to say, how I feel does not matter to my dialysis center - it's the CMS regulations and the pay that matter. As a person, I feel that I am slowly disappearing, until only the patient is left.
I'ts the ongoing feeling of being powerless over my own life and body that is is gradually diminishing me. Still, I was hanging in there and actually doing fairly well until Baxter decided to recall their current cycler, which happens to work perfectly for me, and replace it with an upgrade that will no longer allow me to run my therapy (you now have to start on a drain, even if you hook up dry). I have tried the new cycler, and it does not work for mel
If you don't even have control over keeping the most basic piece of your dialysis treatment, a cycler that works for you, what have you got left? If you are no longer allowed to dialyze in a way that meets your needs, where do you go from there? After 15 years of CKD, I need a predictable means of treatment, not one that can be taken away from me without recourse.
I feel that I am caught in a web of government regulations and corporate interests that leaves me no room to resolve my problems successfully. I am depleted - emotionally, my quality of life is gone. I'm thinking of giving up. At least there will be peace at the end of that road.
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Purgatory, I got all anxious and unhappy reading your post; I can't imagine having to learn a new machine that doesn't even work better for you, anyway. That must be incredibly frustrating. The notion that third parties have more control over your treatment than you do...well, "frustrating" is too meek a word. For how long have you been having to use the new cycler? I seem to remember seeing some posts here on IHD about it, but I don't know what the general consensus is.
I'm not advocating anarchy, but what would happen if you missed the occasional blood draw? I'm assuming that the center wouldn't get paid?
I wonder why someone doesn't make an easy to use meter like the ones diabetics use for their blood draws. I guess they don't extract enough blood for them to do all of their tests. Still, it would be a good idea.
Do you have any ideas about how you might grab more control over your own life? Is there a different cycler you could use that might be better? I'm sorry...I don't know anything about PD machines.
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I switched from PD before the upgrade. Can you not just bypass the drain by pushing the button so that it cuts to the fill cycle. I often bypassed to the next cycle with the old software.
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Ah right, listen up!!!!
A while back I managed to get off dialysis and I have stayed off dialysis. At the moment I am undergoing radiation zappery for Lymphoma and will be on it for the remainder of this month. I have no posted recently because my efforts to deveop a consensus on an advocacy approachs was met with grumbling. Well Holy Crap! Why would anyone want to sit in that damn chair while some technician who is only passively interested in your presence, waltzs around a room that could also serve as a warehouse while you have to make loud noises to get any attention? Huh? Who? Not me, folks?
And I had this random thought that someone else might also not like the idea of being connected to some damn machine for the rest of their life.
The technology is very old, per dialysis machine. Why arent we pushing for something better? Where is the research in regeneration? It happened to me, why not you? Say, where is your Nephologist? Once a week? Once a month? Come on folks, this is your life.
Someone up there, a few messages ago, commented that meeting privately with your Nephologist means making an appointment. I did that and its $80 more for the privilege. Doesnt anyone give a good goddam that you are sick and need something besides a hookup to a blood-sucking machine? Well, I happen to think you do need something else, something besides a TV with 200 channels and nothing to watch.
Perhaps you have forgotten what life is, or was. Where the hell is that social worker?
My recommendation: get cancer instead of renal failure, they treat you better.
Gerald Lively
Mad as Hell!!
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Read "mel75" and ask, Why doesn't someone help that lady?
Thread "I hate this life."
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I have no posted recently because my efforts to deveop a consensus on an advocacy approachs was met with grumbling.
I think you will find that throughout the "renal community", there is not a consensus about what the goal of advocacy should be because CKD/dialysis/transplantation are bedeviled by a myriad of concerns.
I personally think that we should be targetting several things. In order to have more funds and services for people on dialysis, I think we should have as at least one goal keeping as many people as possible from needing dialysis in the first place. I think the numbers are unsustainable, what with our ageing population and with the increase of diabetes. We can't afford either financially or socially to have so many people on this very burdensome therapy. So we need CKD prevention, and we need more people getting transplanted and off dialysis. Reduce the dialysis population as much as possible, and then advocate for a strategy that works to support those people who either cannot or do not want to go through transplantation.
So, for those patients, what is the goal? Is it "rehabilitation" like what cardiac patients experience? How do you define that? Do we make sure that people get treatment that will enable them to continue/go back to work? What if the patient is already retired? What should be the goal of treatment for that population? Do we just look at Kt/v, or do we look at "quality of life"? And how does one define THAT? Well, that's the question I asked in the first place. So when we start talking about advocacy, I suspect that each of us has our own definition of that.
One group that in very involved in advocacy is Home Dialyzor's United (formerly NxStage Users)...amanda100wilson can tell you more about them. Rich Berkowitz has made many trips to DC to give presentations to various committees in an effort to promote and encourage home dialysis. If we could encourage more people to dialyze at home, then again you reduce the inclinic population, thereby freeing up more funds and staff for those patients who are more fragile and need more care inclinic.
There is more "advocacy" going in than you may realize, but there are such big monied interests involved that it is hard to hear the individual patients' voice. You have Corporate America on one side and Medicare on the other. A lot of advocacy work gets bogged down in the financials. Medicare wants to save the American taxpayers money but the Davitas and the Fresenii of the world want to make it. Patient centered care is the goal, but REAL patient centered care is so hard to come by.
But I do think that each of us can have a role to play. Every time a new member joins IHD and is greeted by one of us who can give answers and support, we engage in advocacy because an informed patient is a powerful patient. Every time a patient makes considered and articulate suggestions to their clinic, that's advocacy.
The technology is very old, per dialysis machine. Why arent we pushing for something better? Where is the research in regeneration?
You are right. Just 20 years ago, I was stuck in the hospital in the UK for six weeks with preeclampsia and then recovery from a C-Section. My family was back in Texas, and I had no access to a phone. So, my then husband rented one, and it was the size of a brick. Look how far mobile communications have come in that short time, but there has been no equivalent progress in dialysis technology. But again, I think the system will soon be so overloaded that we will need better machines particularly for home use so that people can dialyze optimally at home. Researchers at Wake Forest have constructed a biocompatible bladder that has actually been transplanted, but constructing a kidney is far more complicated. I have heard rumblings that new machines are on the horizon with new technology that address the water problem. It's not enough, but necessity is the mother of invention, and I feel that the necessity is quickly approaching DEFCON 1.
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Just because it wasn't already complicated ...
Most people who have CKD3/4, millions of people, will die of heart failure before needing dialysis. If we did a better job treating CKD 3/4 those people would live long enough to be on dialysis.
We should screen and treat CKD 3/4 but it is likely that if we were successful more people would need dialysis and those people would be sicker and older.
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Amanda, that is the point - you can no longer bypass the initial drain on the upgraded Baxter at all. The program does not allow it.
Moosemon, thank you for your compassion. I posted a different thread under Home Dialysis in April explaining the cycler issue in depth. I have looked at different cyclers, the Liberty and the Newton IQ, both made by Fresenius. Coming from the Baxter, it's a long step down. I don't feel either of them would work for me, plus Fresenius has just started implementing the same "upgrades" as the Baxter, so it too will be of no use to me.
And you are right, missing a blood draw means the center won't get paid - at least that's what they say
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FYI
Bioengineered kidneys
Currently, no viable bioengineered kidneys exist. Although a great deal of research is underway, numerous barriers exist to their creation.[5][6][7]
However, manufacturing a membrane that mimics the kidney's ability to filter blood and subsequently excrete toxins while reabsorbing water and salt would allow for a wearable and/or implantable artificial kidney. Developing a membrane using microelectromechanical systems (MEMS) technology is a limiting step in creating an implantable, bioartificial kidney.
The BioMEMS and Renal Nanotechnology Laboratories at the Cleveland Clinic's Lerner Research Institute have focused on advancing membrane technology to develop an implantable or wearable therapy for end-stage renal disease (ESRD). Current dialysis cartridges are too large and require superphysiologic pressures for blood circulation, and pores in current polymer membranes have too broad of a size distribution and irregular features. Manufacturing a silicon, nanoporous membrane with narrow pore size distributions improves the membrane's ability to discriminate between filtered and retained molecules. It also increases hydraulic permeability by allowing the mean pore size to approach the desired cutoff of the membrane. Using a batch-fabrication process allows for strict control over pore size distribution and geometry.[8]
In recent studies, human kidney cells were harvested from donated organs unsuitable for transplatation, and grown on these membranes. The cultured cells covered the membranes and appear to retain features of adult kidney cells. The differentiated growth of renal epithelial cells on MEMS materials suggests that a miniaturized device suitable for implantation may be feasible.
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SAN FRANCISCO (KGO) -- A breakthrough technology under development in the Bay Area could eventually free thousands of kidney patients from the bonds of dialysis. Instead, a device would handle kidney functions inside their own bodies.
After a transplanted kidney gave out in 2007, David Anderson spent three days a week hooked up to a dialysis machine.
"I don't leave San Francisco very often," he said.
But in the near future, thousands of patients like David could be freed from dialysis by technology being developed by researchers at UCSF.
"This is the device that will have filters that will remove toxins," Bioengineering Professor Shuvo Roy, PhD said.
Roy has a prototype of what could become the world's first, implantable, artificial kidney. The device uses sophisticated nano filters -- sheets of silicon etched with millions of microscopic pores.
"Only toxins and waste water will go through them, the rest of the blood will not," he said.
After it's purified, the blood flows through a second chamber, called a bio-reactor.
It's filled with bioengineered kidney cells that react with the blood. The living cells perform many of the same functions as a healthy kidney, including regulating blood pressure and producing Vitamin D.
Because of that ability, researchers believe the implantable device would not only free patients from dialysis, but it would treat them in ways traditional dialysis machines cannot.
"So the kidney does two main things, so one is it filters all the blood in the body and then it fine tunes the chemical levels in the body. What we do in dialysis is we do filtration part, but we can't really fine tune the chemistry very well," nephrologist and UCSF professor Dr. Lynda Frassetto said.
Frassetto said patients can experience a variety of symptoms in between dialysis sessions and some need drugs to perform functions normally handled by the kidneys.
"I think the most significant thing would be that we would d be able to adjust chemical levels all the time; that should make them feel a lot better," she said.
Unlike the mock-ups in his lab, Roy says the implantable model would work with the body's natural blood pressure, instead of using a pump and without using electricity it could theoretically be implanted in patients for the long term. It could potentially provide a breakthrough alternative to dialysis, which now accounts for $25 billion a year and 6 percent of all the money spent by Medicare.
"These things are very difficult and very expensive, but cheaper than $20,000 a month for dialysis," Anderson said.
Roy believes with adequate funding, his team could potentially have the artificial kidney ready for clinical trials within five years.
Written and produced by Tim Didion
(Copyright ©2012 KGO-TV/DT. All Rights Reserved.)
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Just because it wasn't already complicated ...
Most people who have CKD3/4, millions of people, will die of heart failure before needing dialysis. If we did a better job treating CKD 3/4 those people would live long enough to be on dialysis.
We should screen and treat CKD 3/4 but it is likely that if we were successful more people would need dialysis and those people would be sicker and older.
I have heard this before, but I wonder if it is really true? If we treat CKD 3/4, doesn't that essentially mean treating diabetes and hypertension? If you successfully treat these diseases, why is dialysis inevitable?
If after years of treated diabetes and hypertension, you have patients who are sicker and older, perhaps we should question whether or not they should be made to endure dialysis in the first place. I think sometimes that we are so loathe to stop battling death and disease that we put our sickest and oldest in the torture chamber that is the dialysis clinic without thinking long and hard.
Gerald, yes, you got my point. I really do believe that dialysis as we know it is merely too burdensome and way too expensive, and that's what will spur researchers into innovation. This is where federal money could come in. Spend money in this sort of research instead of handing it all to Davita and Fresenius.
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First, I feel I must say that I am speaking from only my personal experience with Dialysis.
I started dialysis at a time in my life when my career was just starting off in the right direction (I just started when I was turning 31) I went to college, never got married because I was busy working and going to college planing my future then BAM Kindey failure so my quality of life well it went right in the toilet right along with all my hopes, and dreams!!
now you add body scars, caths, loosing hair, acne, fat, mood swings, non working organs, bitterness, resentment, anger, tiredness, side effetcs, pills, piils, pills, pills and more pills the realization that I will more than likely now be too old now to even have children (if I ever do get a transplant and can even get pregant after) so all that work and going to college to build that career which BTW I am just to tired to go to so I ended up leaving anyways so I did it all for nothing Kidney failure took it all from me!!! my career, my ability to have children and now i am left over a 100K in student loan debt, and a sh*t hole of a future.
now as for being "sick" well now that has improved from about 10% to 90% from in center hemo to CAPD and I am telling you that my overall quality of life has improved so much since starting CAPD!!! and if I ever have to go back to Hemo........... well rest assured I wont, you wont be reading my posts anymore b/c I will not be here anymore!!! no way I am putting myslef through that EVER again!!! death has got to be better than that!!!!!!!!
and if one more person tells me to be positve I think I will scream!!! :urcrazy;
I think I do pretty good with the postiveness most of the time, but c'mon people I am friggin normal!!! need to vent too!!! ;D ;D
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Three years ago when I was having chemo for non-Hodgkins lymphoma, I felt so crook that I sat down and worked out exactly what I needed to regard life as worth living. I came up with three things.
The most important thing was my curiosity. Without curiosity I might as well be dead. I have always been extremely curious - about everything - science, politics, economics, current affairs, etc - anything except what Brad and Angelina are up to. I felt a deep disappointment last week when there was an announcement about a space flight to Jupiter's moons. It was to be ten years to lift off and ten more years till images come back, and for the first time for this type of event I realised I would probably not be around to see them. At the moment I still have an overabundance of curiosity.
The next requirement was that I should still be useful. I became a sole parent from when my two children were about to reach high school. I had always worked full time, and I always did-it-myself around the house. I would lay pavers, carry railway sleepers for the garden, run round on the roof looking for broken tiles, grow our own vegies, keep chooks - everything except electrical work and heavy plumbing. I cared for 100+ foster kids. My definition of useful has been bent to the point of breaking. It has shrunk to 'I'm able to look after myself'. Now it is being shrunk even more - I have applied to the council to have a cleaner come to help with my housework. In Australia the federal and state governments pay the local councils to provide subsidised home help - cleaning, minor maintenance, gardening, transport - to help keep us oldies at home instead of in nursing homes. It was an enormous step to take - almost an admission that I can no longer look after myself. But what a relief that it has been taken. Another useful thing I still do is design and knit exotic garments for an upmarket shop in the city. I think that still counts as useful and it is also a form of meditation. Oh and I still feed the cats!
The last requirement for a decent life was that I still have all my marbles. I am missing a few. My main problem with this requirement is that I might not realise that I've lost more marbles than I am aware of.
When I was in my very late teens I almost died three times (one drowning, two skydiving accidents). Then the only other girl who was skydiving at that time was killed. She was a lovely girl and would have made the most wonderful mother and grandmother. Ever since then I have been very aware that I have had 50 bonus years and 2 bonus children. Just about every day has been valued and most appreciated. I am still getting a lot of pleasure out of life in spite of dialysis (PD) - I'd like another ten years so that I can see my two cats off to the Great Cattery in the Sky. My children and sister (a doctor) all know that if I need more than two days in ICU and if the medical staff can't guarantee that I'll come out better I went in, I'm not to be revived. I don't feel at all morbid about this. I've even outlined my funeral plans. There will be no funeral - my ashes will be scattered near the Black Spur where I will be trodden on by lyrebirds and possums - nibblies will be served and champagne will be drunk - picnic style.
Death is life's last great adventure. I can wait a few more years to try it.
:flower;
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Unlike the mock-ups in his lab, Roy says the implantable model would work with the body's natural blood pressure, instead of using a pump and without using electricity it could theoretically be implanted in patients for the long term. It could potentially provide a breakthrough alternative to dialysis, which now accounts for $25 billion a year and 6 percent of all the money spent by Medicare.
"These things are very difficult and very expensive, but cheaper than $20,000 a month for dialysis," Anderson said.
I worry when I read these numbers because they are not right, in that they are not the numbers that matter to anyone trying to bring a dialysis alternative to market.
The cost of dialysis, the Medicare allowed rate for a year of dialysis, is about $39,000/year (Medicare pays 80%). That $20,000 number could only be what a private insurer pays (over $1,500 per treatment) and the 25 billion is what Medicare pays for the medical care of beneficiaries with ESRD - all costs, Tx and dialysis.
These new devices have to come to market with a business model that is realistic. That's one of the barriers. It has to replace existing therapies so it would have to have similar reimbursement. Can it be done for ~$30,000/year?
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oh MaryD, i loved reading your writing. It sounds vaguely familiar too. I love what you had to say and how you feel and wish that the times when i feel this same way, i could hold it always. Theres 'those' times, and there others where im so uncomfortable with it all. I will take this and read often.. :)
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Hi am am 26 years old and have been on HD for almost 3 years, and I can tell you that being on dialysis has its ups and downs (mainly because of the toxins piling up) but I choose to see things on the brighter side, so I can tell you that being on HD is not as bad as it seems to be.
Now you are on HD, your health will not be as stable as before so choose activities that are less physically draining, don't plan vacations for months ahead because you'll never know when you will get sick/weak.. A week in advance or two is ideal when planning out of town vacations.
Choose to do your errands in the afternoon or early morning where the sun is not at it's hottest, Hot temperature mean wanting to drink more water.
Accept within yourself that you are a patient and have to take a little more precautions than when you are not. This way, you can tailor your activities and plans based on the reality of your situation rather than making big plans and get frustrated when your body could not keep up.
In all, my life as a patient, is a little laid back than most of my friends, but i still get to enjoy the leisures in life like doing groceries, eating out, go to the beach.. i don't exercise but i make sure i get my walking to maintain my muscle mass, eat the right food, and avoid instances where i could get infected with airborne diseases.
they say getting a transplant is better than on HD. But right now, I am fine with having HD 2x a week. I used to be 3x but for cost constraints, I had to do with 2x..
and oh, i blog about my journey as a dialysis patient at this young age. some of it are during my 'depressed' mode, that's when when toxin levels are high.. then i have happy blogs, that's when blood is clean.
for some reading, do view www.averysandygirl.blogspot.com for inspiration and reflection
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Quality of Life -- defined differently for each individual as individuals are unique unto themself with their own needs -- perhaps, a simple explanation is 'quality of life is being able to do the things you want and experiencing pleasure from such' the second part of QofL is to have delivery of care support such whcih would mean less complications that would interfere with your QofL and feeling more energized, perhaps by longer treatments, or home dialysis.. (just a brief overview). and the second part should be the first.
I always had to laugh when the Social Worker came around with the many papers that patients needed to fill out related to their quality of life -- all about paperwork and being sent to CMS for analyzing etc.. but was anything ever done ,,,e.g. how can we get you to be able to enjoy more life activities? not really.
Providers can profess all they want about being focused on quality care resulting in quality life, however, as I continually stress, the day to day care often is NOT conducive to one's quality of life
opinions of Roberta Mikles www.qualitysafepatientcare.com
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from my personal experience... my quality of life ever since starting PD has gone down the drain. However, I still don't think it is "that bad" because I am grateful that I am not on hemo.
I love eating out, travelling, staying out late. The PD cycler doesn't allow me to do any of this (conveniently). Although I am grateful that I still have good enough energy to go to school and study. Summer is coming and I am saddened that going to the beach wearing a swim suit will just be a dream for me because no one would want to see a catheter hanging out of my belly.
I feel like I'm a different person with my social network. They know about my condition but I think that they feel bad for bringing it up and talking about it with me. I also feel bad for bringing it up because I don't want to make it seem like I'm trying to make others feel sorry for me. It has been silence and a lot of keeping things inside.
Being young, you often get pressured onto doing certain things and it's really hard to say no to certain things by providing the reason of "because my kidneys don't work anymore"... example: being pressured to drink alcohol at a party.
Some days I feel ok.. some days I feel like shit. The past few months feels like I've been living in a nightmare and hoping that I will soon wake up.
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jadey, I wish I could give you the benefit of all the wisdom of my years. LOL! But your post reminded me of a party I went to when I was in college, so I guess I was about your age. This girl came in who I knew but didn't know well. I noticed that she had these really cool rings on her fingers. Each ring was like a triangle, surrounding the middle knuckle on each finger. So I walked up to her and said that I really liked her rings, and where did she get them? They were just so unique! She smiled and explained that she had rheumatoid arthritis and that the rings helped keep her knuckles from becoming deformed. I have no idea if these rings had been specially made for her or if they were prescribed by her doctor. But they were cool. Anyway, my point is that she just calmly explained her condition, and no one really thought twice about it.
I really hate to think of any disease causing social isolation at a time when friends are really the center of a person's life. The old me would like to tell the young you that people are rather self-absorbed and probably would be cool with your dialysis if you helped put them at ease. If you don't think it's a big deal, then they won't, either. I'm sure your friends care about you and so don't want to make you feel bad, but...well, you're feeling bad. What can you do to change that, do you think? They are young and inexperienced in dealing with people with chronic illnesses; they don't know what to say, so they say nothing. I'm afraid that they are going to look to you to give them a clue in how to deal.
If you could be assured that they'd be ok with everything, what would you ideally like them to know? What would you want to say to them?
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I would be willing to bet that all of us when we first found out we had kidney failure were concerned at to what others (friends, co-workers, etc) would think or react. The motorcycle group I ride with has always been supportive of me and even to the extent to remind me that it is time for an exchange. Example: we had ridden out to this nice coastal town for lunch and it was time for an exchange. This would be one the first times I had done an exchange while with the group and I was concerned about it. I told the group to go ahead and get a table, order and all that stuff and I'd be in when I could. NO - all of them stayed outside with me while I did the exchange and then we all went in together. No one seemed at upset or shocked at what I was doing. As has been said, if you aren't embarrassed about it, then others won't be either. Grumpy
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jadey, I wish I could give you the benefit of all the wisdom of my years. LOL! But your post reminded me of a party I went to when I was in college, so I guess I was about your age. This girl came in who I knew but didn't know well. I noticed that she had these really cool rings on her fingers. Each ring was like a triangle, surrounding the middle knuckle on each finger. So I walked up to her and said that I really liked her rings, and where did she get them? They were just so unique! She smiled and explained that she had rheumatoid arthritis and that the rings helped keep her knuckles from becoming deformed. I have no idea if these rings had been specially made for her or if they were prescribed by her doctor. But they were cool. Anyway, my point is that she just calmly explained her condition, and no one really thought twice about it.
I really hate to think of any disease causing social isolation at a time when friends are really the center of a person's life. The old me would like to tell the young you that people are rather self-absorbed and probably would be cool with your dialysis if you helped put them at ease. If you don't think it's a big deal, then they won't, either. I'm sure your friends care about you and so don't want to make you feel bad, but...well, you're feeling bad. What can you do to change that, do you think? They are young and inexperienced in dealing with people with chronic illnesses; they don't know what to say, so they say nothing. I'm afraid that they are going to look to you to give them a clue in how to deal.
If you could be assured that they'd be ok with everything, what would you ideally like them to know? What would you want to say to them?
Thanks for sharing that MooseMom!
Ultimately I want them to know that I can;t do certain things anymore and why that is. But at the same time, I don't want to be left out because I won't be able to do certain things. For example, going out late at night, going swimming at the beach in the summer. I don't want to make others change their plans for me, but I also feel bad to always be the person who is like "it's okay you guy's have fun". It's a complicated feeling.
and Grumpy-1 -you're so lucky to have such a supportive group.
I've always been afraid of being judged. Realistically, a lot of people who are not exposed to sick patients or hospital settings would be totally freaked out if they saw my catheter.. never mind me doing an exchange. If I wasn't in this situation, I would feel squirmish too. I don't want to make others feel uncomfortable.. so I always feel like I'm constantly hiding or doing things discreetly.
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Oh jadey, being young can be so much fun but can also be so stressful.
That desire to want to keep from making everyone else uncomfortable...that never goes away, really, no matter how old you get. But I have learned that you just cannot be responsible for everyone else's feelings. If you were to stand up on a soapbox and tell all of your friends your story, some of them would be very sympathetic and would want to do everything possible to make you feel included, others would thing, "Oh, ok," and then would just get on with their lives, and one or two might feel uncomfortable. So, how do you control what EVERYONE feels and how EVERYONE reacts? Well, you can't. All you can do is join in life as much as your physical condition will allow.
If your closest friend found out she had cancer, what would you want her to share with you? Would you rather her not tell you about it, or would you want her to confide in you and feel comfortable with you? Would you be squeamish if you saw her losing all of her hair? If so, do you think you would "judge" her or start avoiding her?
I understand your fears about being left out or being judged or making everyone uncomfortable, but do you REALLY think that would happen? I mean, just how GOOD are these friends of yours? You may be right...maybe they WOULD shun you. I don't know them, but you do. So I'm really sort of curious...do you really think that they would be so thoughtless and unkind and that they would expect you to hide yourself away just for their own personal "comfort"? Gosh, you don't have anything to be ashamed of. I know that when you're young, it's hard when you think you are different, but your friends have to grow up some day, you know? Maybe you're not giving them enough credit. Or, maybe you know them so well that you KNOW they will "judge" you. I sure hope not. What do you think? Do you think you can trust these people?
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I actually do have a close friend of mine who was diagnosed with rectal cancer just a few months before my own ckd diagnosis. In my nature, I asked her all sorts of questions and made sure I know every single detail of her condition. I'm so glad that she was comfortable with sharing that information with me. However, when I visited her and see how much she has changed, how much weight she has lost--I feel heart broken. It definitely makes me feel very uncomfortable to hear about her condition but it does not stop me from listening or supporting her.
And ya you totally have a point in your last comment. I know that a majority of my friends are sympathetic and will not feel uncomfortable because of my condition but I think it is really my own insecurities that make me think this way. I trust that I will not be judged by my friends but I cannot say the same for feeling uncomfortable. Everyone has a different tolerance level and although some may feel uncomfortable, they are still willing to step over it and face the problem...while others would rather conserve themselves and avoid the situation. Like you said, I cannot control how others feel but when I see how they react or a lack of reaction to what I have to say--it doesn't feel good.
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I wish I felt uncomfortable! I am anemic. My wife says I should check my hemocrit numbers. I went to the beach house yesterday to visit my mother for her 89th birthday. We ate lunch at Fisherman's on the pier overlooking the waves. I had scallops and rice. It was wonderful. It was great to see my sister again, and I was glad my mother liked her gift, a wine basket. The weather was fog and sun mixed together. But afterward I just kicked back in the chair and dosed off. I spent most of today in bed, falling asleep, dreaming, waking up, then dosing off again. I jumped on the treadmill for 20 minutes and walked a mile. I usually walk two or three times that. I hate being anemic!
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Whamo,
Are you taking eprex to control the anemia?
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It definitely makes me feel very uncomfortable to hear about her condition but it does not stop me from listening or supporting her.
Good for you. What a wonderful friend you are to put her needs before your own discomfort. :cuddle;
I know that a majority of my friends are sympathetic and will not feel uncomfortable because of my condition but I think it is really my own insecurities that make me think this way. I trust that I will not be judged by my friends but I cannot say the same for feeling uncomfortable. Everyone has a different tolerance level and although some may feel uncomfortable, they are still willing to step over it and face the problem...while others would rather conserve themselves and avoid the situation. Like you said, I cannot control how others feel but when I see how they react or a lack of reaction to what I have to say--it doesn't feel good.
You are absolutely right, and I apologize if you felt that I was pushing you into doing something you don't feel comfortable doing. Your feelings are important, and you have the right to protect yourself, and if that means staying silent about your dialysis, then that's what you do. But I would encourage you to hope that one day soon, your relative discomfort will largely disappear, and you will finally say, "Well, screw this. I don't need to avoid my friends anymore." It takes time.
You know, I was thinking about you and all of this earlier, and it strikes me that our young people have always been the ones who have advanced the notion of tolerance and acceptance. Young people have been at the forefront in the fight for civil rights for all kinds of people, depending upon the time in history...civil rights for African Americans and the LGBT community, for example. Each generation seems to be more open to accepting differences in people. Maybe your friends will be more accepting of you than you think. I hope they will help you with the insecurities that come with being young and "different'.
I wish I could think of something to say that would be more helpful to you. I just hate the idea of you missing out on the fun of being young.
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maybe it is old age, but I not longer care what other folks think about my condition. Example I was a Myrtle Beach Bike week rally last week and time came for an exchange. I just moved my bike to a shady spot in the parking lot and unpacked the supplies and dialysis bags. Hooked up and let it do it's thing. Folks of all ages walked by and looked, but no one seemed to be too concerned or taken back at the supply bag hanging from the handle bars or the drain bag on the ground. While I don't make a big deal of it, I'm also not afraid to explain to someone who asks. Grumpy
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I suspect that once we get older, everyone else is older, too, and they have their own medical issues. We're just happy to still be alive; the bags and the pills are just part of it. LOL!
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Late response, I know, so I'll be brief. Predialysis I was quite sick but since it was a creeping up type of sickness, I wasn't vitally aware of it. First month or six weeks on dialysis were rough. Now, 4+ months into the program, I feel really good the day after dialysis. Sometimes, when I've gained too much weight between sessions, the rest of the day post dialysis isn't too good. I'm tired.
Now, dialysis is my job. I have a schedule and have to keep it. Along with diet restrictions.
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My recommendation: get cancer instead of renal failure, they treat you better.
Gerald Lively
Mad as Hell!!
I hate to say this/admit this, but I am jealous of those who get cancer. That is all people seem to care about. Cancer this, cancer that. And you can beat cancer. There is NO beating this. I personally would give anything to have cancar and NOT dialysis. Pure torture and not being able to eat anything any tme.
Just me, and my pure sickness of dialysis.
Lisa
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Lillipoo or lillipie;
Try dialysis and cancer at the same time. I beat kideny faiolure after they said I'd never get off dialysis. I did it in eight months. I just finished a month of radiation for lymphoma and I am hopeful that the CT scan scheduled for next month will show no tumors.
My remarks about dialysis vs chemotherapy has much to do with the quality of care. The repitive drudgery of dialysis in a faciluty that can also serve as a garage is an insult to the fact that we are human beings. Neither chemotherapy or dialysis is something we want to undergo, but my experience is the treatment for cancer, which can be very difficult, is far better with the professionalism of the staff and the welcoming decor of the facility.
I have had cancer four times now, have beaten a full scale kidney failure (per the doctors), suggered surgery, multiple chemo sessions (including ABVD) and two radiation bouts. My choice is for better treatment for everyone.
Gerald Lively
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Glad to see you posting again, GL. How are you?
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Good to see you back, Gerald - and you are ever-so RIGHT -- cancer patients are treated much differently than dialysis patients and, in fact, get not only more respect from the professionals but are educated more
Roberta Mikles BA RN - Dialysis Patient Safety Advocate - www.qualitysafepatientcare.com
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Lillipoo or lillipie;
Try dialysis and cancer at the same time. I beat kideny faiolure after they said I'd never get off dialysis. I did it in eight months. I just finished a month of radiation for lymphoma and I am hopeful that the CT scan scheduled for next month will show no tumors.
My remarks about dialysis vs chemotherapy has much to do with the quality of care. The repitive drudgery of dialysis in a faciluty that can also serve as a garage is an insult to the fact that we are human beings. Neither chemotherapy or dialysis is something we want to undergo, but my experience is the treatment for cancer, which can be very difficult, is far better with the professionalism of the staff and the welcoming decor of the facility.
I have had cancer four times now, have beaten a full scale kidney failure (per the doctors), suggered surgery, multiple chemo sessions (including ABVD) and two radiation bouts. My choice is for better treatment for everyone.
Gerald Lively
As long as we're picking our afflictions I think I would rather have halitosis instead of either one.
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"As long as we're picking our afflictions I think I would rather have halitosis instead of either one."
Bill, love it. :rofl;
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@ Bill, yeah, I've done the kidney failure/hemo-dialysis and cancer at the same time, too. I don't recommend it!
I really struggle with those who say they'd rather have cancer than ESRD. Having had both, I TOTALLY disagree...
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The hardest part of HHD is making time to do it. Other than that I remain active. I simply am not going to over-analyze ERSD. I strive to just keeping on going!
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The hardest part of HHD is making time to do it. Other than that I remain active. I simply am not going to over-analyze ERSD. I strive to just keeping on going!
Oh, I like this! God, I overanalyze everything! ::) I can be a real navel-gazer sometimes. Thanks for this!
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I just haaate dialysis with the passionn. Death looks really good most days. Im tired of the supplies coming when they want, the horrible food choices and the general public seems to not care at all about kidney failure. People almost worshop cancer and that is actually beatable.
I dont want both. Just would rather have cancer and NOT kidney failure.
People seem to be more sympathic towards cancer. Just my opinion.
Lisa
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I just haaate dialysis with the passionn. Death looks really good most days. Im tired of the supplies coming when they want, the horrible food choices and the general public seems to not care at all about kidney failure. People almost worshop cancer and that is actually beatable.
I dont want both. Just would rather have cancer and NOT kidney failure.
People seem to be more sympathic towards cancer. Just my opinion.
Lisa
Cancer is not a single disease, anymore than kidney disease, there are many varieties. Some varieties of each you would not wish upon anyone, let alone yourself. The thing I am having trouble with is that dialysis isn't a disease. Dialysis is a treatment. So let me reframe the question.
If you had a choice would you treat your CKD with chemo? Just to narrow the choice. If instead of a year of conventional incenter hemo would you prefer 156 chemo sessions? It's hard to imagine the choice but if chemo somehow could replace kidney function to the same degree as incenter would you choose it?
I'll say I would go with the dialysis.
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Having tried both, I would choose dialysis.
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I just haaate dialysis with the passionn. Death looks really good most days. Im tired of the supplies coming when they want, the horrible food choices and the general public seems to not care at all about kidney failure. People almost worshop cancer and that is actually beatable.
I dont want both. Just would rather have cancer and NOT kidney failure.
People seem to be more sympathic towards cancer. Just my opinion.
Lisa
Cancer is not a single disease, anymore than kidney disease, there are many varieties. Some varieties of each you would not wish upon anyone, let alone yourself. The thing I am having trouble with is that dialysis isn't a disease. Dialysis is a treatment. So let me reframe the question.
If you had a choice would you treat your CKD with chemo? Just to narrow the choice. If instead of a year of conventional incenter hemo would you prefer 156 chemo sessions? It's hard to imagine the choice but if chemo somehow could replace kidney function to the same degree as incenter would you choose it?
I'll say I would go with the dialysis.
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Well, if it's sympathy you're looking for, go for cancer.
But let me frame it for you the way I see it. In order to beat cancer (at least this time) I had to have a double mastectomy. I have 2 huge ugly scars from under my arms to my breast bone on both side where my breasts used to be. I am not just flat, I am concave. Everything is gone including some of the muscle covering the breast bone. I am not a candidate for reconstruction. I am 48 years old and married. For the rest of my life I will have a constant reminder every time I shower or look in the mirror or make love with my husband that cancer stole something from me, something every other woman has, something our society seems to put a huge amount of emphasis on. Imagine it for just a moment. And while you're at it google recurrence statistics for breast cancer. Not pretty.
On the other hand. My kidneys failed and for 5 years I was on dialysis. I did PD most of the time, with a cycler at night. It really was not horrible for me. It became routine. The 6 months on hemo were by far the worst, but they happened to coincide with the cancer so everything was awful then. Then I got a transplant and I am getting my life back. Meds and a blood draw once a week now. Not bad!
I never thought I would die from ESRD. Maybe that was totally naive. But the minute I heard cancer I was sure I was going to die. So was everyone around me, including my 14 year old son. The kidney failure we, as a family, really handled well because I was, for the most part, able to take care of myself and keep things pretty normal for my husband and son. The cancer was a whole other story. It rocked our world like nothing else!
So, having never been down the road I've traveled, you probably don't understand, but, as I've said before, wanting cancer over ESRD is just ridiculous in my opinion. But, if it's sympathy you want, you get it when you have cancer....because everyone is terrified that you will die.
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WishIknew: very well said.
It is just a shame that there isn't more compassion and understanding towards people with ESRD. What pees me off is the 'you can have a transplant and live happily ever after' mentality of the general population, and this site is testimony to the fact that many of us do live shortened lives and endure a premature death. It seems that there OSA contradictory u derstanding of ESRD. On one hand, there is the attitude, 'you can have a transplant, despite the fact that any story about transplantation refers to 'life-saving' surgery. Puzzling.
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Amanda, I totally agree, it is unfortunate the people don't have more understanding and compassion towards people with ESRD!
:flower; :flower; :flower;
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My husband was on dialysis for many years before the cancer came along. I wouldn't wish either on anybody. He did the chemo therapy to try to reduce the mass, it wouldn't have taken it away but he was so sick from the chemo, he finally decided to wing it for the rest of the time he had left. The dialysis was still on and for 3 days a week at 4 hours per session.
He had lost weight with dialysis but it was unreal what cancer did to his body. The care that I gave to him to keep him comfortable was substantial compared to what I had to do for him with dialysis.
If there was a choice, I'd go with dialysis. There are bad days, but everybody has bad days. Please don't think I don't understand, trust me I do. The way I've been looking at it is that renal failure does not get enough funding to research/create an artificial kidney, etc (in this day and age, I don't understand it) Cancer funding has been in the billions of dollars and not one cure for even the remotest cancer has been found. I may sound bitter, I'm sure I am since I lost my husband but we are in 2012. Scientists can isolate things, so why not follow up on one little thing so we can have hope that there COULD be a cure?
Sorry for the rant.....
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opinions of Roberta Mikles - Dialysis Patient Safety Advocate www.qualitysafepatientcare.com
Well, I am wondering how political this is -- an artificial kidney (they are working on this now in California) -- I am also wondering how the large dialysis providers would survive if there was an articifial kidney - Would they still make large profits as they are? When you see how much money the providers give to our congressional leaders, one has to wonder ---
Don't let anyone fool you -- as far as I am concerned the providers are all revenue thirsty and will do anything to increase their revenue --- just take a look at what happened with the Epogen escapade and Davita --and the resulting congressional hearings -- many patients were placed in situations of harm due to overdosing --
I think the providers will do anything to keep patients dependent upon them --
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Dialysis Advocate, I think we'll see a big change in dialysis treatments during the next decade. The current kidney center model is unsustainable; it's too expensive.
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At a time when resources are plentiful, the World squanders. And yes, Dialysis patients, there seems to be a kidney replacement on the far horizon based on certain filtering fabrics. I suspect we will never see it, not you, not me. For now we warehouse dialysis machines and you take a number, take a chair and we let them take out too much water a practice guaranteed to make you feel like a two-day old dog poop on the front lawn.
Reliance on a single research idea is a fools game. We have a demonstrated need to get off that damn machine, an opportunity to lead a more active life; we need freedom from the tyranny of casual routine institutionalized treatment. We are people. I need not declare that DaVita or Fresenius does not want to abandon the dialysis machine in favor of an artificial organ replacement. That, we know, represents the killing of the cash cow.
The resources I mention are the people suffering from renal failure. They are either dead or sitting next to some machine that was not meant to be a cure but a type of hold you in place for now medical procedure. But once you fall into that category, you are forgotten. So, where are the big bucks going? We know! Cancer research! There is enough cancer money floating around that treatment facilities look much like five-star activity rooms. Dialysis centers by comparison are converted garages.
So, we give you drugs for anemia, surgically alter your body to accommodate the machine, then we ignore you. I opt for freedom, I want to bitch to every soul that gets within shouting range, I want to draw attention to the plight of the 500,000 patients that reside next to that infernal machine. Stop screwing around, I would say, stop war and use that money to invent something that doesnt kill.
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Well said GL, and Roberta Mikles. Us D'ers are just cashcows being milked.
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GL - not sure if I posted this here or elsewhere, but I had an eye opening discussion with my neph last month when I was in for my monthly visit. I discussed this exact topic with him, why there seems to be money coming out of every orifice for cancer but not an extra dollar for renal patients. What he told me was interesting. He told me that the money to be made in cancer is in the drugs. Apparently, oncologists may make $100,000 per year seeing patients (just using round numbers), but they make $200,000 per year buying chemo drugs from manufacturers and reselling them to patients (well, actually to their insurance companies). So while there is skillions of dollars to be made in oncology, there's not an extra buck to be had in nephrology because Medicare doesn't pay squat.
When I was in-center, I knew I could throw my weight around, so to speak, because I was a private insurance patient. I got the shift I wanted immediately and could always seem to be able to change shifts whenever I wanted. When the FA started making noise about my lack of a fistula, I told him that if he kept it up, I'd leave for another clinic as there were tons of choices in my area. I knew what they were getting from my insurance company each week and I knew how much it would hurt if I left. I kind of felt like an ass when I was doing it, but I figured that I would get what I want from the clinic while I still had the ability to do so.
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I agree whole heartedly that those machines are temporary yet they are the only lifeline at this point. There needs to be a better way.
After what you said Cattlekid about the oncologists, I now know why my husband's oncologist was upset when he stopped chemo. We had to make the choice of quality of life or quantity of life, which there is no guarantee. He chose quality.
Once my husband passed, I kept receiving bills from my insurance company saying that they were never paid fully for dialysis. The problem was the office kept billing private insurance before medicare. I spoke to them at least 6 times before I became frustrated enough to just pay it and get it out of my life. Now, I've received 2 notifications over the past 3 months that the dialysis company is trying to bill them yet again for services that were paid for!!! Pure greed.
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Unbelievable! So glad I have the good fortune to live in the UK (concerning the billing arrangements that is)
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I wonder what the difference in cost of PD verse Hemo (in a clinic) are. I see the amount the clinic and doctors send into my insurance and what the insurance pays. Pd is not cheap. But is it cheaper than maintaining a clinic and having a staff man it? I would it so. Whammo is right, I don't think the current model can continue, but not sure what is a better method and still provide quality care to us patients. Grumpy
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I wonder what the difference in cost of PD verse Hemo (in a clinic) are. I see the amount the clinic and doctors send into my insurance and what the insurance pays. Pd is not cheap. But is it cheaper than maintaining a clinic and having a staff man it? I would it so. Whammo is right, I don't think the current model can continue, but not sure what is a better method and still provide quality care to us patients. Grumpy
Yes PD is cheaper which is why some clinics are educating people on PD, since the passing of the bundling. It is about $100,00 a year, give or take for hemo and about 60,000-70,000 for PD. Well for my supplies are $200 a day
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My QofL wasn't horrible when I was on incenter HD. I was never a candidate for PD. I adapted my life. Wasn't great, but hey, I was still breathing. Now I'm on nocturnal HHD. 7hrs x 5 nights while I sleep. Much better dialysis; 35hrs a week vs the 15 I used to get on conventional HD. And it's all while I'm sleeping so my entire waking life is mine again. Before, I had a hard time keeping my phosphorus in acceptable levels. Now my labs have been outstanding for months. My food AND fluid restrictions have been removed (maybe relaxed is a better word). I think noc HHD is as close to a transplant as you can get.
As far as the last topics for the last few days of this thread, I'm very confident that nanotechnology will produce nano-level filters(dialyzers) for us that will be dramatically superior to present technology.
Someone above posted that their unit pulls off too much fluid; but why would you allow that? Don't you calculate your own goals? When I was incenter, they would tell me the goal they calculated and I would concur or not. We, the patients, are ultimately in control of our treatments.
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Well said, I see all medical staff as advisers
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"It is just a shame that there isn't more compassion and understanding towards people with ESRD. "
I have to say the above statement hit me hard because even thought I am with ESRD but often I am lack of compassion and understanding to us as well ....
Sometimes on TV, it seems ESRD mean death sentence without transplant. I will be thinking "come on... it is not that bad, work with your doctor, make some like adjustment,
life move on, I did it OK for more than 10 years " but until ...
last year, I was doing in-center hemo, I saw some people were really really sick ;
last year, my sister was battling with breast cancer ;
early this year, I lost my best friend for 25 years to overian caner ....
I realized that I need to be more compassion and understanding not only to people with ESRD or people with Cancer but everyone around me,
because they may have their own burden or suffering I could never understand and I would never want to be in as well.
It is truth there are things I would like to do but could not due to ESRD but I choice not to focus on that, instead ....
to feel the warm that california sun gives me; to see the beauty of the fog in San Francisco;
to enjoy the sweetness of that one cherry; to cry and laugh with my family & friends...
to live every day to remember what matter to me so I will not have waste the time/blessings given me
hmm.... I felt much better now. How about you?!
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YellowRose,
That was beautifully put and I agree with you 100%.