Bob's Blog Saturday 4-11-09

[BobN]

Bob Here

When you’re on dialysis, sometimes little things become really important.
   
Recently, I hadn’t seen some family members in a while, and when they asked what was new , I practically jumped out of my skin, and said,

“I HAD A COKE LAST WEEK!!!”

They just looked at me like I should be sitting off in a corner somewhere, mumbling to myself and counting my own fingers.

To give a little background that I’m sure you can all relate to, my dietician had told me my labs showed that my phosphorous was actually too low, and that was just as dangerous as being too high.

So, she recommended that I ease up on my self-inflicted, strict low phosphorous diet to get the number up to acceptable levels.

Of course, the one thing that I miss the most after going on dialysis was Coca-Cola (no, I’m not affiliated with Coke in any way, you suspicious little devils).

Coke was my favorite drink, pre-BigD, but I of course gave it up because it is high in phosphorous.

So when she told me that I was too low, I immediately thought, baby, we’re back.  Coke, you and me this weekend, yee-ha.

So, the wife and I went out for lunch that Saturday, and I had a cheeseburger (also a first in 2.5 yrs.) and of course that wonderful colored sugar-water with a fizz that just truly sends me.

My wife said I was grinning like a little kid in a candy store the whole meal.

She wondered how anyone could consume a whole meal with such a stupid grin plastered all over his face, but, she said, I’ll give you credit, you did it.

So, then, of course, I wanted to tell everyone about it, hence the scene with my family.

Thing is, sometimes we have such restrictions on our lifestyles, that little things that would be meaningless to the average individual seem to spin the world on it’s axis for us.

Anyone else have a similar experience?

During treatment a couple of weeks ago, I had something unique happen that only fellow dialysis patients could relate to.

I’m sure many of you have set the blood pressure alarm off for being too high or too low during your treatments, right?

OK, but how many of you have set it off for both reasons (too high and too low) during the same treatment?

Maybe a few of you, ok.  But here’s a doozy for you.

I managed to set it off for being too high and then too low…ready…in consecutive readings.

(I really think the high one was just a bogus reading, but I’ll tell you I was practically popping my buttons I was so proud of such a rare occurrence.)

My attendants, who are already a little questioning of my sanity, really thought I had lost it.  I was practically break-dancing in my chair, not an easy thing to do.

One of the attendants, who wasn’t there when it happened, came by and I, of course, told her all about it, all excited, and then I said something like, pretty good, huh, what do you think?

She just mumbled something under her breath in response, but I’m pretty sure I heard the word “schmuck” in there somewhere.

Again, anyone outside of the dialysis sphere (and probably some within it) would think that making a big deal out of something like that would show that you were a few tacos short of a fiesta platter.

But some of you know what I mean, right?

It probably has something to do with the length of our treatments as well.  I mean, we’re pretty much required to sit still for 3.5 to 4.5 hours, depending on your treatment time. 

When we were younger, the thought of sitting still for that long would have been next to impossible, and is still pretty difficult now.

So maybe minor stimuli are blown out of proportion in our worlds.

Sometimes it’s as simple as just having a good treatment.  After a string of bad ones, just not cramping is cause to celebrate.  Or getting a good night’s sleep, not always possible on a treatment night.

But the food thing is particularly sensitive.  If you find yourself in a situation where you can suddenly have something you haven’t had in a while, it’s huge.

In another low phosphorous period, I got clearance from the dietician to have a corny dog at the State Fair last fall.

I’d kill for those corny dogs.

The moment we got there, it was clear that I really only wanted that corny dog, and I was driving everyone else nuts.  Finally, they just relented.  When I got to the stand, looking like I hadn’t eaten in months, and ordered up two big ones.

The guy in the stand was just looking at me, and he finally said, “Sir, isn’t 10 o’clock in the morning a little early for two corny dogs?”

I was a little embarrassed, because, in my fervor, I had lost all sense of what time it was.

So, I said, stammering…well, yeah, kind of, but I got up early this morning, so my body clock is ready for lunch.

Pretty lame.

But boy did those corny dogs taste good.  My little piece of heaven.

Of course, I felt like I had to go for a jog later that day, because those things have like 100% fat content, but I really enjoyed them at the time.

Again, the little things, right?

What are some of the little things that get you all going?  I’m sure there are some.

Let me know.

Thanks for reading.  I hope everyone has a good week of treatments.

Remember to stay active.

Take care.

[willowtreewren]

Bob,
I laughed so hard reading this I nearly wet my pants! 

When my husband switched to NxStage we had to make a sudden dietary switch. those treatments pull off lots of potassium so he was too low. When we went to the grocery store it was like two kids with unlimited money in a toy store.

We were giggling and running around saying things like, "Look! Cantelope!!!" "Hey, how about some potatoes?" "Oh, wow! Spinach!"

I know we must have gotten lots of looks from the other shoppers, but we were in so much ecstasy at the freedom that we were oblivious to anything except what had potassium.

It was glorious.

Yeah. It is hard to describe the little things that mean so much.

[G-Ma]

   Great Bob...you had me rolling on the floor...good thing I can't pee or would have had problems.  I too am pretty much impressed by little things.  I trained the kids early on as to how much fluid I was allowed and the other evening I got a can of zero sprite..love it...the youngest son grabs it and says isn't this a bit over your limit...I think I almost snarled...good impression of a dog grabbing his bone...I said hell no I've planned for this all day and it's mine and you are warming it with your hands...give it back.  Guess I handled that really well.  He loved it.   

[kitkatz]

Awww! The kid loves you! My kids would hide the bananas from me.

[G-Ma]

ohhhhhh nooooooo don't start me on my half a banana.........grrrrr

[petey]

My story is about.... pee !

My husband Marvin stopped urinating about a year after he started dialysis the first time (in 1995).  He didn't urinate again until he got a transplant (2000); then, he urinated a lot every ten minutes.  When he had to go back on dialysis in 2003, it seems like he stopped urinating again the day after he started back (I think it was really a month or two, but it seemed like it was almost instantaneous).  So, Marvin hasn't urinated (this time) since November of 2003.  All along (both times on dialysis), he has had the strongest urges that he needs to urinate, but...alas, nothing!

About two weeks ago, we were at the ballfield where Marvin and I volunteer in the youth baseball league.  Marvin came out of the bathroom with this really strange look on his face.  "I peed!" he announced.  Come to find out, it was -- according to him -- barely enough to fill up the lid on a soda bottle, but, hey, it was pee!

A couple of the coaches were standing in the concession stand when Marvin made the announcement that he had urinated.  Soon, the word was all over the ballfield that Marvin had urinated.  Everybody was so excited!  "Marvin peed!  Marvin peed!"  The little boys on Marvin's baseball team came up to him throughout the rest of the evening, high fiving Marvin.  "Way to go, Coach Marvin!  I heard you peed!"

Who else in the whole world would get so excited over a couple of ounces of pee -- except a dialysis patient who hasn't urinated in years?

Marvin hasn't urinated since that night, but when he does again, I know we'll be just as excited!