Bob's Blog Saturday 3-14-09

[BobN]

Bob Here.

Checking in after a busy week.  I don't get much of a chance to look in on the site during the week.

Pretty busy schedule, with working full time and...um let's see... what else is it that takes up so much of my time...give me a minute here...

Oh yeah.  I'm on dialysis three times during the week.  MWF.  Three and a half hours each.

No wonder I'm a little tired this morning.

Had a fairly uneventful week of treatments.  Well, just one little disruption.

On Wednesday night after my treatment, I got up from my chair to get weighed per normal procedure and like an airhead carried my bag full of dialysis-related stuff (you know, blanket, pillow, books, headphones, ipod, gloves, hat, etc. etc.  I could live out of this bag for a month if I had to.)  Problem was, I carried it in my right (fistula) hand.  The stress caused a minor blowup, bled all over the place, had to sit back down and do the pressure, re-bandage routine.

After 4.5 years, you'd think I'd know better than to make a rookie mistake. 

Anyway, in my effort to keep a semi-normal life while not getting my blood sucked, I do try to force myself to stay active on non-D nights.  Even though the thought of just relaxing at home after work is pretty appealing, I try to do things every once in a while to keep from letting dialysis dominate.  I'm sure everybody here knows what I mean.

On Thursday night, went to a Dallas Stars hockey game with my daughter.  Tomorrow (Sunday) my wife and I play for first place in our mixed doubles tennis league.  (Remember, her - top notch amateur tennis player; me - complete hack?)

We play the second-place team.  The winner is likely to finish in first place.

I have to admit, although we try to exemplify good sportsmanship on the court, we taken a certain evil pleasure in beating people 15-20 years younger than we are.  I'm 53, she's 51.  Most of the other people in the league are in their 30's and 40's.  One couple is in their 20's, and we beat them 6-3, 6-1.  Chalk one up to having life experience.

Anyway, one thing I wanted to talk about today is a sore, dialysis-related, subject with me.

Does anybody else get teed-off with people who don't take care of themselves?

I'm talking about following their diet, fluid restrictions, taking your binders, staying active, etc.

We've all seen them, people who come into their treatments with 6 kilos on, phosphorous and potassium through the roof, and a blood pressure that practically pops the cuff valve.

One such guy was my neighbor in a former center that was my home away from home a couple of years ago.  He had his worst nightmare when a doctor and nurse were questioning him about his lifestyle because all his readings were out of whack.

Problem was, every time they asked a question, his girlfriend would pipe in and correct his "not exactly true" responses.

Phosphorus high.

Him,"Can't imagine why, try to watch my intake, religiously take my binders."

Her, "You drink milk with every meal and snack, we went out to eat three times this week, you skipped your binders each time.  You eat peanut butter cookies like there's a shortage, and last night you scarfed down half a bag of peanuts and washed in down with a cold brewsky."

Potassium high.

Him, "Not sure why, followed my diet to the letter."

Her, "We went out for Italian on Saturday.  You had spaghetti and meatballs with extra tomato sauce.  You think pizza is a health food.  You think you can eat all the potatoes you want as long as their deep-fried to wash away all the bad stuff."

Fluid overload.

Him, "Think my dry weight needs to be adjusted."

Her, "You might think about not guzzling through a garden hose, swishing down coke and beer.  And my milk budget is on the level of bank bailout funds."

Needless to say, the doc and nurse ended up reading this guy the riot act.  But, not surprisingly, not much changed going forward.  Old habits die hard.

The way I look at it is, hey I know its not easy doing what we're supposed to do.  But, face it, we've got a serious illness and are really being given a second chance with this treatment regimen.  If you abuse yourself, its going to make your long term chances of living that much more difficult, not to mention the brutal treatments that ensue.

I feel like people that don't toe the line are an affront to those of us that do.   Sometimes I feel like its none of my business, but others I want to slap these guys upside the head.

Anybody else feel that way?

OK, I'm off my soapbox now.

Hope everyone had a good week of treatments, and I'll try to check in again next week.

Remember, inactivity is the enemy.  Take care.

[Wenchie58]

I always enjoy reading your posts BobN!  It is frustrating to watch those who just don't take an active interest in their own way of life....or lack thereof.  In the long run, the only person we can count on for ourselves IS ourselves.  You're an inspiration although, I don't think I will take up tennis! 

[glitter]

I think it may be harder for some people then others....people are different- for some people food plays a different role then it may for other people. I think saying 'someone elses non-compliance is an affront to you'- is making something personal to yourself that is someone elses business. just my 

[kitkatz]

Dialysis will eat your mind and take your life one piece at a time if it can.  Good luck in the tennis tournament.

[dwcrawford]

Truthfully, almost every waking minute I am thinking what if, what will, how will it be when and if I start dialysis.  The time is short to decide and I'm not there yet.  I get more and more depressed each day.  But I wish you would think about, before you judge other people about how they react, that some people are stronger than other -- some have more of a support system than others -- and some simply have more motivation, inspiration, or what ever inner strength it is -- than others.  I'm kind of glad I was not in the chair beside you. 

That said, I admire and am envious of your courage and fortitude and whatever other things motivate you.  And I realize I'm not in a position to understand fully how you feel.  I expect most would like to be like you.  Perhaps you set the bar too high.

[del]

My husband is very conscientious of his fluid intake and what he eats even now that he is on nocturnal and can eat and drink more. He very rarely has more than 2 kg on. Usually it is one kg or less!!  He knows all the foods that are high in potassium and phosporus and watches his intake especially if it is his night off.  If people don't follow their diet and watch their fluids they are the ones that have to suffer the awful treatments that they have sometimes.  Nothing anybody (only themselves ) can do about it.  Some people just don't know what to do or how to watch their diet. I had one man say to be when hubby was in center. 'I can't understand why I have so much fluid on. I only ate jello this week. There's no fluid in jello is there?" He really didn't know that jello was basically just flavored water!!!

[G-Ma]

dwcrawford....I was writing in my mind until I read your response.  You said it perfect.  We are not all perfect, I'm sure I could list all kinds of faults in many people but it comes down to "we have to be on our own butts..no one else is going to help", and sometimes I just cannot do a day of total dialysis goodness.     Grrrrr.

[kitkatz]

What is a day of dialysis goodness? To tell the truth I do not think I have ever experienced one of those!

[G-Ma]

"dialysis goodness"...my dictionary...24 hours of thinking about this disease every minute and doing everything exactly right every minute.  I've never had one either....well, yes when I was in the hospital on a feeding tube....    

[kitkatz]

 


Oh yeah, that is supposed to happen? I am going to be good on my diet, watch my fluid, and have a super dialysis session perfectly the rest of my life?   

I laugh because I can!

[G-Ma]

and exercise every minute you have available       laughing on me......

[kitkatz]

I hate dialysis! 

[petey]

In the last 14 years, Marvin has seen so many other dialysis patients, and many of them didn't take care of themselves like they should.  Marvin never got angry, mad, or "teed off" at them; he did feel compassion and empathy for them, though -- because he certainly knows how hard it is to do everything you're supposed to do.

As for strictly following the renal diet (and Marvin knows exactly what he should and should not eat), Marvin "cheats" every once in a while.  Sometimes he really craves those "no no" foods, and when he does, he eats just a little.  He says eating just a little will satisfy his craving for them; if he denies himself, then the craving seems to get bigger.  I never fuss at him when he does this (and it's not on a regular basis -- just every now and again).  He'll say, "I know xxxx is not on my diet, but I really, really want just a taste," and I'll say, "Go for it...but take a couple of binders with it."  What good would fussing at him do?  Marvin's a grown man, and a very intelligent one at that.  He knows what he's doing.  And, I certainly don't tattle to the doctor or the dietician!  Marvin's blood work has never been awful (even with a little "cheating"), and now that he's on home hemo, it's even been fantastic for the last 20 months.  I think if it ever got to the point that everything was out of whack in his labs that Marvin would try harder (and God knows it is hard to start with) to follow that renal diet to the "T."  I guess he's figured out that a little cheating here and there isn't awful -- or at least not as awful as denying himself a few little pleasures in life.

The fluid restriction is something that Marvin has conquered.  Before ESRD and dialysis, Marvin ALWAYS, ALWAYS had a drink (soda or tea) in his hand.  When he started dialysis and the doctors explained the need for fluid restriction and set his limit, Marvin tried very hard to follow it.  At first it was extremely difficult, but he discovered that just one extra glass a day (over his limit)  would "cost" him at the next dialysis treatment.  He got to the point (very quickly, I might add) where he followed that fluid restriction very, very carefully.  Now that he's on home hemo, he can drink a little more each day, but he's become so accustomed to watching every swallow that he doesn't struggle with this any more and often finds that he doesn't even reach his "limit" every day.  Marvin usually has on 1 to 1.5 kilos every day (we do home hemo six days a week), and that's not too rough on his body to pull off (no urine in almost five years).

Dialysis will eat your mind and take your life one piece at a time if it can. 

Marvin would disagree with this statement.  He thinks that dialysis GIVES him his life -- a different life, yes -- but a life just the same.  And for us, Marvin's life is still good and still fun.  If it gets to the point where it's not, perhaps Marvin will feel differently.  I'm so thankful that it hasn't come to that for us yet -- and I hope it never does.

I think all ESRD/dialysis folks are living with their own battles, and some handle it differently and see it differently.  And, all dialysis partners/caregivers/spouses have their own set of battles to fight, too.    Marvin says that he's living on "borrowed" time and should have been dead 14 years ago.  He thinks he's been "cheating" death for the last 14 years and dialysis has helped him do this.   I'm not saying that all dialysis folks should feel like Marvin does; it's just how he's coped with it all. 

[paddbear0000]

I think the girlfriend is hilarious!! Although, after that, she may no longer be the girlfriend! 

[BobN]

Bob Here again.

Thanks to everyone who replied.  I know not everyone agrees with me getting cheezed-off with others.

But I truly didn't mean to be mean-spirited or even judgmental.  I agree with everyone who said that the only ones who can make a difference is ourselves.

Again, I know as well as anyone how hard it is to keep up with this regimen.  I've been on the big D for almost 5 years in total.

I love food and giving up some of my favorites was very difiicult.  But, I know from experience the complications that ensue when we stray from our prescripted routines.

I just hope in some small way to relay that following our diets and making a concerted effort to stay active can make our lives on dialysis that much better.  Nobody here wants to be on dialysis, but remember, there are a lot of people who are much worse off, and would trade with us in a second.  A friend of mine is undergoing treatment for cancer, and I don't have to tell you how bad that is.

You can bet that if he had the option of undergoing three times a week treatments and a diet and fluid restriction and having a semi-normal life otherwise, he'd jump at the chance.

I hope everyone here takes my blog as it was intended.  The story about the patient and his girlfriend is a humorized version of a true story.

I would like everyone to give it a shot.  Follow your routines to the best of your ability, find some form of exercise that you enjoy.  I really feel like you'll be amazed at how much the quality of your lives will improve.  And your spirits will be lifted as well.

OK, gotta get ready for my match.

Take care evryone. 

Stay active,  Stay healthy.  And stay in touch.

[dwcrawford]

I realize that this website is primarily for those on dialysis and I am using it to determine if I want to go that route or take the alternative.  Yes, I know what the alternative entails!  Therefore, this will be my last post on this subject.

At the moment that I read the original tirade against the patient in the next chair, I had decided definitely to take the alternative.   I could not live up to expectations that some would have.  I hope no one else feels the way I did about it.  While I respect your management of the situation and see many admirable qualities in you and value in your comments, I would definitely resent that attitude. 

Respectfully I would suggest that kidney failure is in a class with cancer.  I suppose the lesser of the two evils would be the one that one does NOT have.  I would take treatment for cancer for two reasons:
. 1. there is a remote chance of a cure and
  2. research is being done in a large way to find cures. 
This, as I understand it, is life long and no cure.  I hope I am wrong. 

The "girlfriend" is not humorous.  Nor is the man's situation!  He needs encouragement and education and not ridicule.  I wonder what "renal friendly" meal she has prepared for him?

The End.....

[petey]

dwcrawford --
I understand what you're saying, and I agree with a lot of it.  The situation of the guy in the chair next to BobN is, to me, quite sad and definitely not humorous.  And, like you, I think this guy-in-the-next-chair needed compassion and encouragement and not ridicule or condemnation.

I could not live up to expectations that some would have. I hope no one else feels the way I did about it.

To your comment above, I would say: While in-center dialysis is usually performed in a very open, non-private setting (chairs sitting so close to each other that the patient "next door" can hear and see everything that's going on in your chair), I think ESRD/dialysis is a very "private" disease.  Each person has to learn how to deal with dialysis (or, as you are considering, how not to even start it) in his/her own way.  Just as each person's body is different, so is each person's attitude about having this disease and what type of treatment (if any) to follow.  What works for one will not necessarily work for another; what one can do, another cannot.  What one WANTS to do (or wants not to do) may not be the wishes of another.

I think coping with ESRD and dialysis is something that each person must come to terms with in his/her own way.  You don't have to "live up to the expectations" of anyone but yourself.  You take your meds if you want to, you watch your renal diet if you want to, you watch your fluid intake if you want to.  You go to your treatments if you want to.  No one will (or should) force you to do these things.  It's all up to YOU.

My husband Marvin sat next to many different people when he was in-center hemo.  The ones who didn't follow their diet, their fluid restrictions, etc., Marvin felt empathy for because he cared about them.  He would come home from a treatment and say to me, "I wish XXXX would watch his fluids more because he came in at 6 kilos over today, and he had such a rough time on the machine."  Marvin wasn't "looking down" on his neighbor in the next chair; he was feeling compassion for him.  Marvin never, never would have openly chastised another for what he/she did or didn't do.  In these last 14 years, Marvin has come to feel that EVERY dialysis/ESRD patient he meets is his brother/sister; he thinks you're all fighting the same battle -- just each in his/her own way.

The comparison of fighting cancer to fighting ESRD is a mixed one for me.  There have been quite a few (too many, actually) members of Marvin's family who had to fight cancer.  His mother had bladder cancer, and she fought it for two years before she died.  His nephew had non-Hodgkins lymphoma and "beat" it (he's been cancer-free for ten years now  ).  He had a niece who died of ovarian cancer at age 25.  He had one brother who has survived renal cancer (five years cancer-free  ).  He had another brother who just died in January, only 28 days after his diagnosis of pancreatic and liver cancer.  He has another brother fighting pancreatic cancer now (diagnosed in November, extensive surgery in December, fighting hard now).  I guess with the diagnosis of "cancer" that one's mind automatically thinks "death -- and probably soon" (or at least that's my first thought when I hear of someone who's been diagnosed).  But, with a diagnosis of ESRD, I think, "Okay, dialysis can keep you going...."

Would Marvin have traded places with any of these family members?  No -- especially not the ones who lost the battle with cancer.  I guess Marvin feels like ESRD is "HIS" disease, and he's come to terms with it and knows how to live with it.  And, then the others might not want to trade places with Marvin.  His favorite nephew (the one who survived non-Hodgkins) said just last week, "Marvin, I could never, never, never do these dialysis treatments six days a week like you do.  I'd rather die."  And, Marvin told him, "I hope you never have to make that choice."

When Marvin was first diagnosed with ESRD and dialysis started four days later, I never thought he'd live 14 years.  I thought it was a "death sentence" for him, but I was WRONG.  Marvin has lived an absolutely wonderful life in the last 14 years.  Yes, there have been some very intense, very difficult, and even near-death times along the road, but it's still been good overall.  Marvin, on the other hand, says he didn't think it was a death sentence; he says he knew all along that he'd "make it."  His goal is to live to be 100, and he's only 53 now!  Now that I've seen how hard he fights and how much he wants to live a good, productive, happy life, I believe he might make it.

This, as I understand it, is life long and no cure. I hope I am wrong.

You are NOT wrong.  ESRD is life-long and there is NO cure (not even a transplant -- that's just another form of "treatment").  Marvin says that he would "give back" ESRD if he could, but since he can't, he's just going to do the best he can with it.  He thinks he's making the right choices for HIM -- that's not to say that his choices would be right for you or for anyone else with a diagnosis of ESRD.

 

[dwcrawford]

To petey

I'm sure that your Marvin is a strong and dedicated person, but I bet you that he would say that much of his motivation and strength to carry on comes from having you as a strong advocate and support system. 

[petey]

To petey

I'm sure that your Marvin is a strong and dedicated person, but I bet you that he would say that much of his motivation and strength to carry on comes from having you as a strong advocate and support system.

dw-- I think you hit the nail on the head there.  We both feel that I am a major reason why Marvin continues to do as well as he does.  I personally think that's why God brought us together 23 years ago; He knew that Marvin would need me.  Marvin is very, very appreciative of all that I have done and continue to do for him.  In return, he makes me feel very special and loved.  We make a good team, and we both know that the biggest "purpose" we have in our individual lives revolves around the other.