Lies My Clinic Told Me

[Comeback Kid(ney)]

I am curious to hear from others some of the lines that were used on you by your clinic to lessen the blow of doing dialysis. The favorite line used on me was used by my original nephrologist and second social worker. They both uttered the phrase that I should just think of doing dialysis as a little part-time business. EXCUSE ME. This is a full-time business and I do not gaid paid for all my hard work with the grand prize of surviving another day. These staffs give me that warm, fuzzy feeling! How about you?

[jbeany]

Well, I bet that line works on a few patients...

I loved it when the nurse told me my periods would just stop and I wouldn't have to mess with them anymore.  NOT!  Heparin just makes them worse and worse.

[lmunchkin]

Well, fortunately, we do not have to listen to In-Centers lines anymore!  THANK GOODNESS!!!!!!

[MooseMom]

Several years ago, I was really struggling with all of this, and I made an appt with a psychiatrist.  When she said to think of dialysis as a job, I walked out.

[jbeany]

That must be a pretty popular line then, huh?  A business, a job, whatever.  Ummm, last I checked, you could quit a job and just be broke, not dead.  Not that it doesn't take up as much time.  But seriously?

I've noticed not a single one of them ever says to think of it as life support.  Guessing they think that's too depressing!  Oddly, I preferred that thought.  "I have to do this to live.  If I don't, my other choice is to die.  So I do what I gotta do so I can get on with the parts of my life that are worth doing." 

Guess I've been diabetic for so long now, I don't like sugar-coating!

[okarol]

That reminds me of a news story I read years ago:
Patient’s Dialysis Is Like a Job, but Doesn’t Pay the Bills
http://www.nytimes.com/2006/11/18/nyregion/18neediest.html?oref=slogin

[Ang]

 little part-time business.
[/quote]

funny thing , this was exactly the thought process  i used.

dialysis is my part time volunteer job.

[monrein]

So here's where we all differ so much person to person in how we view things or take things or whatever.  Mind you, it's one thing to arrive at a perspective on your own and quite another to have someone else glibly tell you that a particular way of thinking about something is the way to go.  Sometimes the tone in which something is said can just be the point of rejecting a concept

I've had jobs I didn't enjoy, jobs that didn't pay so well and jobs that had parts I "hated".  However I did them all because of necessity.  I saw D like that except that the necessity was life support, as jbeany said, and living as well as I can is a powerful motivator for me.

I very much considered dialysis my job...and I tried to create a life around it...no point being a workaholic.  I tried to learn everything I could to be better at it, I tried to become less dependent on others for supervision, I brought work home with me sometimes, I had to take extra training in aspects related to the job...nutrition, pharmaceuticals, medical procedures etc etc...and I had to try to not crush everyone around me with the burden of my "profession".  People get tired of constant "shop talk" no matter how fascinating it might be.   At times the work felt more like a prison sentence but I really worked to move away from that analogy since feeling less powerful undermined my ability to focus and get various aspects of the job done.

With my first transplant (23 years) and now with my second, I still consider this renal business my job.  I've received a promotion and the view is better from this new office but the responsibilities remain.  I try to be at the gym every day that I can and I aim for a 2 hour workout.  If I can't be there, I try to walk or do some Pilates mat exercises or resistance with bands.  I also choose my diet for maximum benefit to my body, still very little salt, minimal saturated fats and so on.  I do this for the health of my heart, my vascular system and the rest since I know that we run higher risks of secondary illnesses than "ordinary" people.  I keep up with a schedule of various appointments to doctors, dentists and the pharmacy.  I make sure I never run low on meds....and the list of responsibilities goes on.

I do this job because the rewards are tremendous for me.  Paying jobs bring monetary rewards that allow one to subsist and hopefully do a bit more...like travel, go out, see shows etc.  If I don't do this job well, I either die or live a very reduced life in terms of quality.  Just like my real jobs, there were many rewards that had nothing to do with money.  BUT, this job is more like being a parent, although I've never done that particular job...quitting is NOT an option if one wants to be successful.

[Comeback Kid(ney)]

I commend you on your efforts. Most of the time, I feel like you do in terms of how I look at this job. But, recently, my dialsis time was increased back up toi 8 hours from 6 and yesterday, in the moment, that is how I felt. There are moments that I feel stronger and then other moments that it feels hopeless. I know there are many in the network who feel the same way. As appreciative as I am to be alive, I have my moments and that is why I find it vert cathartic to express what I am feeling at the moment. Don't read too much into a post because you are not always capturing the true essence of the person. As in my case, it may be just a way to vent my frustrations. Being able to have a place to let your hair down is very healthy. I do like the fact that you exercise a lot because I do to and that euphoric feeling is what gets me through the tough days.

[Meinuk]

I always considered dialysis a part time job.  I had to do it, not skip work, deal with all of the administrative headaches and the annoyance, but my payday was that I got to live another day.

Especially when I started home hemo.  It was a lot of work. I used to joke with my friends that the law school was work, and dialysis was my part time job.  Between advocacy and treatments, dialysis took up all of my free time.  It helped me to compartmentalize that aspect of my life.

I agree with Monrein, we do differ from person to person on how we perceive things. I have been offended by people in the dialysis world, when others were not, but I have also been inspired.  It also depends on the timing.  The world has a lot of grey areas that can be interpreted in any way that you choose.

On a positive note, the BEST line ever said to me by a dialysis worker ?  "It is twenty minutes of terror and hours of tedium."

[tbarrett2533]

I was told the same thing by the social worker...... with the exception that she went on to calculate the hours for me 

[Meinuk]

Comeback Kid,

Vent away!  Seriously, ALL of us have had moments of darkness and moments of light. When I think about how much RAGE I have, I think about how much I appreciate IHD.  It is a safe place to VENT, a place to blow off steam. Living with CKD-5 is like living in a pressurecooker.

Someone asked me yesterday "Do you love me?" My very honest answer was "That depends on my mood". (it is an inside joke - but there is always a hint of truth in jokes)

Living with this disease makes us a slave to our emotions.  The cool thing is that everyone here is either living with this or loves someone who is going through it.  It is a very understanding group.  (as long as you don't discuss politics)

[Comeback Kid(ney)]

Non-politically speaking, I couldn't have said it better myself!

[Cordelia]

Omg, Jbeany, you too, with the periods, huh?             Well, I finally got my heparin reduced to half the dosage, hopefully it will help.     


I was told the same thing, to think of dialysis as a "part time job" Hmmmmmmmmm must be a "universal" one liner.     

[kporter85db]

If you really think about, being on dialysis is much more like being a slave to it then an employee of it.

[Comeback Kid(ney)]

Kporter,

     You are so right. I was just this morning telling one of my clients that I feel like an endentured slave at times. Again, I am grateful to be alive but let's talk reality and this is not a quality of life that I envisioned for myself. IT STINKS!!! This is why I am a believer that one day there will be a cure to help regenerate the kidneys. Actually, there is. It is called adipose stem cell treatments that are being administered in Mexico and Germany but god forbid they should be used in this country. And we know why... If we all started getting better, there would be no need for long-term care anymore. The FDA would never improve it because as one nephrologist said to me that a cure is light years away! REALLY!!!

[Willis]

Getting back on topic... 

My PD clinic nurse and neph (and I like them generally) insist that the rule to keep my HGB between 10-12 is for my own good. But the normal range for adult males is something like 13-18. OK, I know at my age (58) and being on dialysis changes things and TOO high would not be good either. But when I was at about 13.5 I felt GREAT for the first time in decades. But no, the protocol says <12 so they cut off my EPO and I crashed for 3 weeks until it had dropped to 11.2 and they were able to give me some more. (And I felt good again after 2 days.) 

 

[jbeany]

If you really think about, being on dialysis is much more like being a slave to it then an employee of it.

Maybe more like working in the family business.  You can't quit without dealing with a lot of guilt!  (When I worked for my parents, the running joke was they couldn't fire me 'cause slaves had to be sold.)

[paul.karen]

Part time?

It is more like a fulltime job IMO.
Watch what we eat, how much we can drink.  I have to hook up for 9 hours a night order supplies set up machine.
With a part time job you get to go home and do nothing for the rest of the day or do what you want to do.

But im glad dialysis can do what it does do for us    Or this would be a boring place to visit....

[Comeback Kid(ney)]

As Jimmy Stewart once said, "what a wonderful life". Yeah right!!!

[MooseMom]

Monrein has a point.  It is one thing to read her post and think, "Yeah, she's been through it, so her perspective is valuable."  But I can virtually PROMISE you that the psychiatrist who told me I should think of D as a job doesn't know her potassium from her phosphorus and probably doesn't really know everything that kidneys do in the first place.  She probably doesn't even know how to spell "dialysis."

Nephs and renal nurses probably think they know what you're going through, but they don't.  In my opinion, they really need to rid themselves of the job analogy.  It's insulting and it's glib.  They need to find something else to say.

[Comeback Kid(ney)]

MooseMom,

    I agree. In fact, I will take it one step further and the best thing for them to say is NOTHING! We are all intelligent enough to eventually figure it all out.

[MooseMom]

I've been thinking about this job/dialysis analogy, and there's another reason I hate it so much, and that is that it doesn't take into account how bad you feel physically.  Sure, we've all had jobs that we've had to take out of necessity or jobs that we have hated, but how many of us have been forced to take jobs that can eventually kill you?  If dialysis, aka your job, is giving you back your health, then that's great.  But how many people on thrice weekly, inclinic dialysis are getting truly healthy?  Maybe dialysis is keeping you alive, but is it keeping you healthy?  For most people, dialysis gradually robs you of your health.  As it is practiced in the US, it is not restorative; it is risky, filled with danger, but you are FORCED to do it if you want to live.  Most rotten jobs don't run the risk of killing you, and if they DO, chances are you can find a different job if you are unwilling to take the risk.

If you are dialyzing at home or if you have a transplant, yes, it is a job, but at least you have more control over the risks you are taking with this "job".  You can choose to dialyze at home, and you can choose to have a transplant, so the fact that you have those choices can make you more accepting of the rigamarole that goes with it.  Plus, there is the added bonus of generally being in better health, and THAT in and of itself makes life more bearable.  But if you are one of the huge majority of inclinic patients getting dialysis in the US, then the job analogy becomes false.

[Comeback Kid(ney)]

MooseMom,

    You hit the nail on the head. Our wonderful government would love to not have to pay out social security to the elderly and if they had their druthers, they would love to see our kidney populace eventually destroyed because of the drain it puts on our health care system. I'll make you a bet that one of the first entitlements to be cut will be in dialysis care. Instead of medicare covering the first 3 years after a transplant, they will roll it back to one or two years. Unless your phenomenally rich. Where is the money suppose to come from to now pay for the anti-rejection drugs. It is a systematic process to eventually do us all in. I hate to be so blunt but that is the real truth behind the kidney industry.

[ESRD Survivor]

If dialysis is a "part-time" job, when is my vacation?