Bob's Blog 11-7-15: Maybe Next Halloween...

[BobN]

Bob Here.

It's scary to think about how someone would look if they dressed up as a dialysis patient for Halloween.  Isn't it?

I think it's safe to say that kidney failure and dialysis do weird things to a person's body and mind.

I was somewhat prepared for the shape-shifting aspects of this disease after I had a kidney transplant. 

At the time, one of the drugs they were using to suppress your immune system (to keep your body from giving the transplanted organ the boot) was prednisone.

Prednisone, for those of you who don't know, is a corticosteroid.  It is used to treat a number of ills in addition to preventing rejection.  It's an anti-inflammatory, which is really ironic considering some of the side effects.

We'll get to the physical changes that prednisone causes in a minute.

The byproduct that particularly impact the people around you are the personality changes.

I know.  Someone is out there saying, "You mean it changed your personality and someone complained??"

Valid point, but steroids are well known to cause serious mood swings and an increase in aggression.  When I first started taking it, I did everything short of growing hair and fangs and howling at the moon.  The people around me, both in my private life and at work, about wanted to have me caged.

Now, the effect was minimized once my body grew accustomed to the drug.  Then people only wanted to have me caged around the full moon.

And the mood swings were about as wide as the Grand Canyon.  I could be talking civilly to a person one minute and look like I wanted to bite them in the throat the next.

I remember meeting with some doctor as I was being put on the Prednisone regimen. 

"You might experience a little fullness of the face," he said.

"How's that again?" I asked.

"Yes.  Because of the prednisone.  It might cause your face to look a little fuller."  He held his hands out about six inches from his face to emphasize the point.

"You're kidding me right?"

"No.  It doesn't happen to everyone and the effect is usually temporary."

"Usually?  Any other side effects I should know about?"

"Well, there's the possibility of mood swings and irritability."

"I haven't had a pill yet and I'm feeling that."

The doctor ignored that and went on.  "Possible irregular heartbeat, numbness and tingling in your arms and legs, unwanted hair growth, an increase in hunger..."

"Wait a minute," I interrupted.  "The nutritionist just left after listing an encyclopedia of foods that I should restrict, which basically consisted of everything on my regular diet.  And now you're going to give me a pill that's going to increase my hunger??"

"Well...not every side effect takes place in every patient.  Everybody's different..."

"Never mind.  Let's go back to the face thing..."

Now, I've never been vain about my looks, but I also didn't want to go back to work resembling a blow-up action figure either.

But, there weren't very many alternatives, so I started taking it, and sure enough, within a week, I looked like I swallowed a pizza tin whole.

I looked like a cross between a koala bear and Miss Piggy's little brother.  My face looked like a bag of melted caramels.

The effect did turn out to be temporary.  As soon as I was able to step up my physical activity, the swelling went down.

The hunger thing was very real though.  Here I was trying to be careful what I consumed and the prednisone about made me want to eat up the tablecloth.

The other immunosuppressant I was on was cyclosporine, and that same doctor had warned me that another risk of taking these drugs was that they made you more susceptible to certain kinds of cancer.

In my case, skin cancers turned out to be an issue.  If my dermatologist had a frequent shopper program, I would have been rich.  Seemed like about every other week some new surprise would pop up, and off I'd go to have it removed.

So, once I started on the Big D, I was pretty well prepared for any new "wrinkles" that were in store.

But, don't even get me going on the chest catheter that got implanted in the hospital.  Forget about the fact that you have to enclose yourself in Saran Wrap every time you take a shower. 

The tubes are something out of a Doctor Octopus comic book.  And, the thing bulges out and shows through dress shirts, which I was wearing steadily at the time.

I had been on dialysis for about six months when the cath decided on its own to take leave of my body.  I was in the office at the time and my shirt was drenched in no time at all.

I calmly walked out looking like a prop for a Friday the 13th movie.

Another aspect of dialysis that came as a surprise in the hospital was the possibility of developing pica.  I remember the conversation with yet another doctor as I was starting up treatments.

"Oh, and by the way," he started, very casually.  "You may develop an appetite for substances that are non-nutritive."

I just sat looking at him.  Then I said, "Non-nutritive?  What the [bleep] are we talking about here?"

He was still very calm.  "Things like paper, metal, chalk, soil, glass.  Perhaps even dog food."

"Somebody put you up to this, right?"

"No, I'm serious.  Dialysis patients tend to have iron deficiencies, which can lead to these symptoms."

"Dog food?  I may start wanting to eat dog food?"

He said, "It's just a possibility that we have to point out."

"Look, I could put up with my face growing to three times its normal size and developing multiple personalities with prednisone when I got my transplant.  Even having a 'Growth of the Week' contest with my skin.  But now you're telling me that I won't be able to pee and I have to replace the chili-dogs in my diet with Alpo??"

Now, I've been fortunate not to have been inflicted with this ailment in my years on dialysis, but I did have a neighbor in one of my centers who might have been exhibiting symptoms.

He was a guy who sat next to me fairly regularly and he generally kept to himself.

In other words, he was my kind of dialysis neighbor.

One day, he grumbled something to himself and since he was normally quiet, it got my attention.

"Excuse me?  Did you say something?" I asked.

He said, "No, I was just thinking that cement looks good."

"Cement?  What?"

He pointed out the window and some guys were paving the sidewalk out front.

I was just looking at him.  Then I said, "You mean they're doing a good job paving?"

He looked flustered and said, "Uh, yeah.  Yeah that's what I meant."

But I was worried that the guy might not have had the 'pica talk', so I went through it.

"Hmmm," he said.  "I have noticed my dog's Milk Bones looking pretty tasty lately."

After that, we agreed that he would get his iron checked and he would keep from getting into a chow war with his German Shepherd.

Anyway, this guy with pica goes into a bar, right?  And he orders a drink on the rocks...

I know, pretty bad.

Dialysis patients with fistulas also have some unusual physical changes to deal with.

It's always interesting to see how people react to the buzz, or the "thrill'" in dialysis lingo.  It's a killer at a party.

Some people will touch your arm and recoil in horror, while others will just emit a "Wow" and look at you like you're some kind of space alien.

But over time, some of us develop what our wonderful doctors describe as "aneurysmal enlargements" in our vessels.  They are these unsightly bulges that look like a small rodent set up camp under your skin.

I'm sporting a pretty good sized one of these myself, and one time I met a tennis friend of my wife's and we shook hands.

"Holy crap, what did you do to your arm?" he asked, his eyes the size of golf balls.

"Oh, that's nothing to worry about," I said laughing it off.

"Nothing to worry about?  No seriously, do you want me to call an emergency medical team?"

I reassured him that he didn't need to summon the EMT's or the Marines, and ran through a brief explanation, but even then the guy didn't look totally convinced that I shouldn't be packed on ice under quarantine. 

So back to the Halloween costume idea.  For a kidney failure/dialysis patient, the outfit could consist of a big, bloated-face mask, maybe with some wolf-like hair all over the mug, some zombie-like skin deformity makeup, a phony arm with a blown-up balloon for a blood vessel.  And maybe carrying our own little dog food bowl.

Pretty scary, huh?

Thanks for reading.  Take care.

[Michael Murphy]

One more time you have provided a funny but true look at the life of a inhabitant of the planet Dialysis.

[Simon Dog]

Prednisone can also make you limp.

[Jean]

As always, hysterical. Please never stop this blog of yours, but even twice a month would be great!!

[PrimeTimer]

I was once on Prednisone for a few months. Right away it became very clear; I needed to keep a list of all the people that I would have to go back and apologize to. The doctor told me that if I had to be on it for any longer that I'd have to wear a medical bracelet to alert paramedics in case I was in an accident. I thought she meant for medical reasons but maybe it was to warn them about the werewolf.

[Deanne]

I'm still on prednisone and was told I'm a lifer. Just stay the h*ll away from me and no one gets hurt!

[Simon Dog]

I'm still on prednisone and was told I'm a lifer. Just stay the h*ll away from me and no one gets hurt!

You should read up on steroid induced avascular necrosis.

[Deanne]

I understand the side effects more than I want to, and begged to be set free from it. I was even considering being non-compliant and still sometimes consider that route.

[Simon Dog]

I understand the side effects more than I want to, and begged to be set free from it. I was even considering being non-compliant and still sometimes consider that route.

It is easier to fix a hip trashed by prednisone that it is to get a new kidney.

[casper2636]

Now, I don't feel crazy when the cat treat "shakes" in the bag make me come running! Met a woman in Dialysis that ate the shavings from sharpened pencils! Thanks, Bob, for pointing out that for us it's one long Halloween celebration, costumes included. You are a Hoot!

[PrimeTimer]

Thanks for the laughs, BobN. Will think of you every time there is a full moon. Aaahoo!

[kristina]

Many thanks again for the giggles Bob and please don't ever change...
I admire your great ability to spice-up such serious matters with your wonderful survivor-humour...
Take care and best wishes from Kristina.

[BobN]

Thanks everyone.  I was going to dress up as a doctor, but I was afraid I'd start talking nonsense and walking into walls.

Scratch that costume idea!

[Riki]

Oh wow..

Prednisone as a teen is not fun.  I was 14 when I got my first kidney, and between the Prednisone, which (thanfully) I was only on for a few months, and the Cyclosporin, I had shaky hands, a bloated face and neck, and facial hair, which has never left me.  Not fun stuff for a teenaged girl, who is already awkward, as most of us are at that age, and already singled out because of my illness, and the fact that I was new to the school.  With kids at that age being incredibly mean, and many of them already had names fit to torment an overweight kid (plus, it didn't help that I'd been on PD for a year and a half beforehand), started calling me a new name, bubble neck.  It's sad that over 20 years later, these things are still burned in my memory, and still hurt a bit.

As for the pica, I never know what that was until I was an adult.  The place I live is basically a huge sandbar.  There is sandstone everywhere.  Gravel for roads must be trucked in from other provinces.  When I was younger, I discovered that I had a taste for the soil.  Since our soil was full of iron oxide, I figured some kind of iron deficiency had something to do with it, but I honestly had no idea.  I soon discovered that the abundant sandstone was actually quite soft, and can be broken with your fingers, and ifyou roll it around in your mouth, it breaks up even further.  I used to hide sandstone in my room and take off little pieces of it whenever I had a craving for it.  I don't do it anymore, but sometimes, if I walk past a construction site with a freshly dug hole, I can smell the soil, and get the craving for it.  It's an odd thing.  I'm glad that I at least know what it is now.  When I was a kid, I thought I was just weird.

[Jean]

I think I am going blind!!!! Is there a Dec and Jan blog from Bob? And I missed them both??? Is Bob okay?

[PrimeTimer]

I think I am going blind!!!! Is there a Dec and Jan blog from Bob? And I missed them both??? Is Bob okay?

I'm here to save you, Jean! No, you are not going blind! Look a little further down the list for his latest titled "This, That And Another Thing".
Now you can "collect" your wits and enter that on the other thread.    Happy Reading!

[Jean]

Thanks so much, I will " check it out"

[Charlie B53]

Prednisone can also make you limp.

I walk with a limp.   lol   Blood pressure meds will do it to you also.

[Simon Dog]

Prednisone can also make you limp.

I walk with a limp.   lol   Blood pressure meds will do it to you also.

Avascular Necrosis of the femoral head.

[Charlie B53]

Grrrrrrrrrrrrrrrr    A whole paragraph wiped out with a keystroke.

Now I'm .........................choose your own expletive.   Oh well, it was a half worthless rant anyway.  lol