Delegate, Delegate, Delegate...

I'm now to a point in my story that I know some of you may disagree with.  You see, after just a few moments of sitting, I threw my wife and sister out of the ICU.

Yes, you read that right.  I didn't want them to hang around there, although I'm sure that they were both more than willing to stay.  Why?  Well, let me explain my reasoning:

My wife and I have two wonderful boys -- Ages 7 and 11.  I like to tell people that the older one is going to be a brain surgeon -- But he will be the most miserable brain surgeon that you've ever met.  He worries about EVERYTHING --   just can't let things go, regardless of what we do.  Of course, until his teachers meet us, I'm certain (many have admitted it) that most think that we must be incredible taskmasters, always hounding him about better grades, not accepting a "B" -- ever, etc...  He just keeps the pressure on himself... Just like his Mom.

My 7 year old could not be any more different.  He is probably going to be a truck driver...  But he will be the happiest, most intelligent truck driver that you will ever come across.  He picks up on things so quickly and easily, but he hates to admit or show just how smart he is.  I'm pretty sure that someday, when I'm gone, he'll be living in his brothers basement, eating his brother's leftover pizza and playing his video games... And having a ball doing it!  In terms of attitude, he takes much more after me -- Pretty laid back unless absolutely necessary.


What does this have to do with kicking them out?  Well, my wife, who also worries like my older boy,  puts so much pressure on herself to be everything for everyone.  And the boys know it, and are quite used to it.  So any disruption in their schedule can drive all three of them up a wall and send our little section of the universe into complete and utter chaos.

So, I have taken to delegating.  When she wants to visit me in the hospital for hours, I refuse.  Although I love seeing her and the boys, I know that, for the time being, their day-to-day well being is more important.  So, although our family, friends and neighbors have all offered numerous times to watch them, I try to keep it to a minimum -- only when we really need them to. While I'm in, I delegate the responsibility of the boys solely to her, and my responsibility is solely to take care of myself -- without expecting  a great amount of assistance from her or others.

There are three reasons...  First, so that all of their schedules remain similar to normal, and so that there is a bit less pressure on my wife because of it.  Second, because quite frankly, I REALLY hate to impose on people.  Again, the less, the better.  And Third, because I know that someday, I will be having an extremely difficult surgery, with a good deal of healing necessary.

My pulmonologist calls the transplant the "failure" option -- Because that means everything else that they have tried hasn't worked.  Knowing all of this, I intend on having my wife by my side 24 hours a day -- I know that I won't make it through without her support.  So if we can minimize all of the disruptions for the kids until then, it certainly will be better -- Because at that point they will have a TON of disruptions, and for as much as I love them, I'm pretty well certain that I'm going to be pretty greedy with her time, and take advantage of ALL of the offers of those who has offered to watch them, drive them to see me, and make sure that they are OK...

So, for now, I figure that, while I'd rather have them here with me, I can put up with all of this alone -- But only because I know that sooner or later, I'm gonna cash all of these markers in and expect payment in full!

Let me know if anyone has a different take on it -- Strictly my opinion!

Uhhhh... Any chance we could get there a bit faster? PLEASE?

So, I was loaded up with everything I had with me, and finally was on my way.  And although I was enjoying being out of the ER, and getting a bit of air, my mind was still pretty preoccupied with the medication that I had just been given, and the inevitable results.  So, in the nicest possible way, I did ask the kind people transporting me to "step it up just a bit".  Well, I think we got there in record time, and out of the stretcher I went -- Into the restroom.

As I emerged, I saw that my new nurse was patiently waiting for me.  "I thought that they had all of the monitoring hooked up on you?  Well, no problem.  We'll get it done now.  But are you supposed to be wandering out of bed?"

I smiled and uttered just one word.  "Kayexalate".

Ahhh... She nodded and began to laugh.  And from this point forward, this kind person was a wonderful source of comfort as I got acclimated to my new reality -- the ICU.  She had already had the opportunity to look over my records hours ago, and although she knew nothing about Alpha-1, she seemed anxious to learn.  The more I explained, the more questions she asked.  Again, my mind was distracted...  to the point that I had almost forgotten about my heart and kidneys, and especially that my wife and sister were patiently waiting outside the room... And (I'm sure) had all kinds of nightmares running through their minds about what was taking so long.

And here's your parting gift, Sir...

Most people who have ever gone through an incident like I was experience (extremely high levels of Potassium in the blood) are going to shudder when I mention this next word...

Kayexalate.

Now, I thought that living on my own as a bachelor at school exposed me to just about any type of horrible, demonic, vile substance known to man.  How many times did I hear "Dude -- just eat it.  It's not THAT old...", as I tried to search through my sofa cushions to find enough change to get something else for dinner -- Even if it was Ramen Noodles.  ANYTHING to avoid the month old "mystery plate" in a college student's fridge.  But unfortunately, too many times necessity became the mother of substances that used to be referred to as food, and I caved in.  Not sure how I survived, but I did!

Now, with this kind of background, you would think that no kind of medication can possibly scare me.  Kayexalate (along with one other, which I will discuss later), are the true exceptions to the rule.  To those who have taken Lactulose, the syrupy substance that I discussed earlier, Kayexalate is just like Lactulose -- on steroids!

Yep -- Same side effects (it binds with the Potassium in your intestinal tract and helps escort it out!), with a far, far, worse taste.  If this wasn't originally discovered as being used by some third world culture as a torture device, I would be really, really surprised.

And, just as I'm getting ready for the trip to the ICU, in they come with this evil brew.  I somehow choke it down, and almost immediately I begin to feel the churning and rumbling in my stomach.  Within 5 minutes, I begin to realize just how quickly and viciously this substance works.  And that, of course, is when the nurse finally comes back in to get me so that I can be transferred.

And the only benefit to this caring and wonderful parting gift from the ER?  At least it took my mind off of what was going on with my heart and kidneys...  Even if only temporarily!

“Don't be reckless with other people's hearts, don't put up with those who are reckless with yours.” -- Mary Schmich

I sat in the ER with my diagnosis, and knew that they had already run a cardiac test.  They again assured me that the reason for me going to the ICU instead of a regular room was in order for them to monitor my heart on a continuous basis -- The sooner that they knew about any potential damage, the more that they could do.

And so, I waited...  And waited...  And waited...  And as I sat there waiting, I realized that there was something wrong with this entire picture.  We've all seen the movies and TV shows where the patient gets thrown onto a stretcher and the transportation staff run all the way to the ICU.  Now, I know that my condition wasn't good -- But as there was no damage yet, this was really a precaution in case it happened before they could get the Potassium level down.

So I didn't really expect any extraordinary rush, with people screaming for items STAT and pushing each other out of the way to get their procedure done.  However, I did expect, as I think is fair, a reasonable level of care and concern.  After all, this was my heart we were talking about, and again, this could have significant effects on the transplant.  So I began to wonder...  If I am going to the ICU for constant heart monitoring, and I already have the contacts on from the first time that they ran the ER heart test, why were the contacts not connected to the ER monitoring (which is very similar to the ICU)?  We asked a few times, and no one knew the answer, but promised that they would "get the nurse right away"!

In retrospect, we SHOULD have demanded an answer.  Over and over again.  It was my right.  But fool me once, shame on you.  fool me twice, shame on me.  I will not make the same mistake again.

SIX hour later, without a single further check of the condition of my heart, I got the news -- Transportation was taking me to the ICU.  And now, although I am not a tremendously religious man, I began to pray that no damage had occurred during that long, long wait...

"Tears are the safety valve of the heart, when too much pressure is laid on it." -- Albert Smith

However, it turns out that the Potassium wasn't the other medication causing issues.  Apparently, as I had gone through each step of the process, medications were added, without careful checking of those that I was already one.  I had ended up with multiple medications for the same symptoms, and despite having the list in their internal system, as well as with me at all times, no one had noticed.  AAARRGGGHHHH.....

So, as I sat there, I began to think about the implications of all of this.  Remember, they were just doing the evaluation to get me on the transplant list, and then... all of this.  If there was lasting damage to my heart or kidneys, regardless of the prognosis for them, would that disqualify me from the transplant list?  Because, without an eventual transplant, I am quite aware of my prognosis -- and it is not a good one.

Realizing the potential of either the lasting damage or disqualification from the list, I soon pretty much fell apart.  A diseased liver, you see, can also lower your testosterone levels (perhaps this is why I now seem to fall apart and get emotional at every little thing!).  So there I sat in an ER bed, a fully grown, reasonably well spoken 43 year old man, blubbering like a three year old, and not being able to pull myself back together. 

Soon the hepatologist came over next to me and put her hand on my shoulder.  Since I was still trying to pull myself together, my wife explained my concerns.  She assured me that they would take good care of me in the ICU, and that they weren't noticing any evidence of lasting damage to my heart or kidneys yet.  She promised that they would watch closely, and I managed to calm down a bit...  And so they left the room, leaving me in the hands of the ER staff to get me safely to the ICU...

"It's not your fault" -- Words without much consolation, at the time...

And so, the surprises began to come.  First, the two hepatologists came into the ER.  They came in my room with a look of concern on their faces, and a chart in their hands.  The Doctor who was clearly in charge introduced themselves and began asking questions about my medications.  In my current condition, I was not a tremendous help in providing information about the medicines, so my wife was kind enough to take over.

The hepatologist was clearly upset over the chart as she reviewed it.  She would point with her pen, point again at another area, and then look over at her colleague, shaking her head.  "Why is he taking THIS medicine along with THIS one?"  She would ask.  Finally, my wife spoke up -- "The list is in your system -- it's what he is supposed to be taking".  She nodded and looked back up...  "I know", she said "It's not your fault.  He's doing what he is supposed to be doing.  We just need to make some major changes to these meds."

The first thing that went through my mind was one med in particular -- The Potassium.  As you may recall from an earlier post, the ER Doctor had prescribed it on a regular basis because she felt the level was low.  And now, the cause of all of the new symptoms and concern was... Potassium.  Even in my state, that all was coming together, and my favorite ER Doctor had made her mark once again -- and not in a good way, nor had she affected my treatment for the last time...