Quality of Life

[justme15]

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.

[Bill Peckham]

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, here). 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 ) 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.

[justme15]

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, here). 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.

[MooseMom]

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.

[Chris]

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.

[Gerald Lively]

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

[Whamo]

Peckham,  I read some of your website.  It was an interesting read.  I wonder how they will handle dialysis when they "fix" Medicare.

[amanda100wilson]

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.

[Bill Peckham]

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.

[MooseMom]

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?

[Cordelia]

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     

[MooseMom]

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.

[Cordelia]

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.

 

          

[MooseMom]

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.

[cattlekid]

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.   

[paris]

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.   

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

[MooseMom]

Oh, I am so totally an Eeyore...

I gotta find the Tigger in me.

[Gerald Lively]

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?

[paris]

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      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!   

[Zach]

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.?

[amanda100wilson]

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.

[Bill Peckham]

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.

[MooseMom]

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! 

[Gerald Lively]

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

[MooseMom]

Gerald, I'm not sure I understood your last post...