"Life will teach you the lessons, it is up to you to learn them" -- Anonymous

I was soon transferred to a regular room, and as the time went by, felt increasingly strong.  With my medication changed, I felt stronger and stronger.  As a matter of fact, I felt better than I had in months!  With the new energy, and a new focus, I couldn't wait to be released from the hospital and get back home.

One of the insidious parts of liver disease is that, until you get extremely sick, you appear to be in pretty good shape.  I've heard many people describe liver patients as the healthiest looking people in the hospital...  But underneath the appearance can be all of the symptoms, including severe fatigue.  So, as I prepared to go home, with an adrenaline rush going and even a small bit of more energy in reserve, I felt unstoppable.  So much so, that within a few hours after getting home, I was able to kick a soccer ball around with my boys -- We hadn't done anything like that in a long, long time.  And it felt great!

It was then that I learned that adrenaline will only take you so far...  I had bounced back well, and still felt pretty good.  But even the short game with the kids would force me to rest, or even sleep for hours.  However, I certainly wasn't going to complain -- A bit of energy was better than none!

The next few weeks and months began a learning experience for me -- A lesson that I still hate to admit that I am still learning.   I could no longer just do whatever I wanted, whenever I wanted.  Many days, if I went to one of the boy's soccer games, even the walk to the field and back would force me to be so tired that I wouldn't be able to do much else for the day.  Limit some activities, so that I could participate in some others -- There was no option to just do them all...  And, while I am beginning to understand the big picture a bit better, I really, really hate it.

"Get busy living, or get busy dying" -- The Shawshank Redemption (1994)

As I wrote earlier, it is nearly impossible to get any rest in the hospital.  And so, as that morning went by, I became restless.  By this point, my potassium was trending in the right direction, as was my ammonia level.   I knew that I only remained in the ICU as a precaution, so there really wasn't too much to stop me from doing what I did next...

I pulled out my laptop and started working...  Well, as best I could given the circumstances!

Well, needless to say, this was something that they hadn't seen before in the ICU.  While they do have wi-fi, the staff was more used to seeing it being used by family and friends, as opposed to the patients.  I couldn't do a lot, but what little I could do felt good -- At least it kept me busy.  And then I noticed something on an email sent to me...  Something that would change my focus...

The American Liver Foundation was having a Liver Life Walk to raise funds.  It was still a while away, and it gave me a bit of perspective. I would soon set a new short term goal for myself...  I was going to get myself strong enough to participate in the walk -- Didn't know how fast I could go, or how far I was going to get, but I would be there.  And thus began a new way of looking at my situation.  Instead of reacting to each new symptom, I would do my best to be more proactive -- Even if it was only one small event, I was going to take back a bit of control over the situation!

And, soon after I made that decision, as if fate were already beginning to intervene, my nurse walked back into the room.  My latest tests showed that my creatinine level -- the indication of damage or issues with my kidneys, had started to change direction and was, ever so slightly, turning in the right direction.  And while mind still wasn't fully back to "normal", I knew that I had made the right decision...

Do what you love, and you will never work a day in your life...

As I sat in the ICU that day, I realized that there was another "type" of health care worker that I hadn't really thought of.  My nurse in the ICU that came came in and introduced himself, and I soon began to see that this would be a very long day...

He walked in, and introduced himself, telling me that he would be there until that evening.  Very nice person, and from his appearance I surmised that he may have a military background.  "Good to see", I thought, "He'll keep things in order!"  Well, I sure that it was his intent, but I could soon see that, try as he may, his execution could not match his effort.

In the room next to mine was, as I began to gather, an older patient who, whether her condition was acute or chronic, had lost touch with reality.  And, it seemed, every 5 minutes would push the call button for the Nurse, without any real reason to do so.  Most certainly not her fault, but, I can imagine, a stressful situation to all involved.  And while most of the personnel seemed to have developed some pretty strong mechanisms to deal with the stress, this particular nurse had not.

With all of his good intent, he begain to get increasingly frustrated with her.  And while it really didn't affect the level of care that he was giving, the stress was clearly wearing on him.  While others would walk into her room, take care of an issue, and walk out, the next step was key.  The others would, if necessary, stop for just a moment and take a deep breath, or speak with a colleague before seeing their next patient.  And when they did walk into the next room, you couldn't ever tell that they were stressed in the first place.

In the high-paced world of the ICU, it would seem that those who last long term, and who truly enjoy their work, are those who can manage to keep on smiling throughout their day -- No matter what.  For that reason, I most certainly hope that he has since learned the lesson and can deal with his stresses better, or that he has transferred to another type of unit. As I have learned long ago, life is far too short to devote that kind of energy to a job that you don't really enjoy!

Here comes the sun...

Daybreak in the ICU is an extremely perplexing time.  While most workplaces have a certain rhythm that they ramp up with, it seems as if the ICU's rhythm is more like a drag race.  While I am not, personally, a racing fan, I remember a quote once made by a driver involved in some version of the sport -- He said it was akin to "getting hit by a cement truck from behind".  Just when you think that the activity has ceased in the ICU, BOOM -- things are flying again!

And so it was that morning.  Just as the sun came out, the noise level increased exponentially.  And the flow of personnel began the steady stream of trips in and out of my room.  As some tried to straighten out my medications, others began to bring me results of the tests being done.  First, the great news was that my cardiac rhythms were again back to normal.  Whew -- One bullet dodged.  Then came the news that my potassium level had stopped rising -- It wasn't near normal yet, but was trending in the right direction.  Yes!  Two for two, and I began to feel like Superman... Faster than a speeding bullet.  Nothing could get me!  I was clearly invincible!

That was the start of one of the most difficult lessons to learn about being ill.  Never get too high about hearing good news, and never get too low after hearing the bad.  And I had taken the bait of the good news, hook, line and sinker.  Of course, the next set of results (which, by this point, I had forgotten even existed), showed that I was still in renal failure, and, although they assured me that they still hadn't seen anything indicating lasting damage, they were going to bring in some specialists -- Just to be sure...

Thanks for visiting us, sir.  Now here is your to-go bag... Full of Kryptonite!  You may want to avoid contact with the high tension power lines on your way down...

So there I sat, still in shock about the sudden turn of events.  I knew that things would probably work out, and yet there I was, like an idiot, unable to believe that I would have let myself get fooled that badly.  Never again, I promised myself.  Never again.

The hospital is no place to get some rest...

They say that, when you really need rest, the worst place to be is in the hospital.  Of course, the first reason is the constant disruptions that only seem to occur just after you have fallen asleep.  Blood pressure, temperature, blood draw, medication... the list goes on and on.  Believe me, I know that there is a reason for them -- I just wish that they weren't absolutely constant!

The second reason is that you are truly out of your typical surroundings.  Not only is the bed different and you are "tied down" with countless amounts of tubing and monitor cables, but you are trapped in a small room with new rules...  What you can and can't do, when to get up and (try) to go to sleep, when you can and can't use the restroom, and having to ask permission or request assistance for every little thing...  The list goes on and on.  As someone who places a high value on my independence, this is especially difficult for me.

The final impediment to sleep, in my opinion, is the noise level. However, it's not necessarily what you think.  Sometimes, the loud noise is unbearable.  People rushing around calling out to each other, procedures being done, other patients in pain or who aren't coherent, and the constant whirring of an infusion pump or other medical equipment.   But at other times, I have found that the exact opposite is true.  The eerie quiet can get to you in the middle of the night just as much as the loud noises.  And that was the case that evening in the ICU...

I know that the ward was busy that evening, but you couldn't have told that from being inside of my room.  As much as I desperately tried to avoid it, I was again alone with my thoughts, and that was not a great place to be that evening.  Thankfully, my nurse soon made her way back into the room.  She was very perceptive, and could see that I was lost in my world of "what-if"...  

She quickly took control of the situation, asking about the transplant, about how I had gotten to this point, and again asking for more details about my disease.  Under most situations, I would have been tremendously annoyed by someone marching into my room at around 2AM and insisting on drawing me into a conversation...  But on that particular night, we sat for what felt like over an hour, and although the conversation involved my health, my family, and my future, the thoughts were kept far more positive than the ones that were running through my mind earlier.  And soon, I began to feel much calmer, and better.. Not necessarily due to any medical procedure, but rather due to a caring individual who, instead of taking a long break when things quieted down, decided to truly watch out for the interest of her patients.  She wasn't just a good technician, nor a good nurse...  She was, without question, a good person.  And I hope that she is aware that others feel that way about her.

And now, a word from our sponsor...

I'm sure that those reading this blog have come to realize that even when I "catch up" my blog to the current day, my story will not yet be fully told.  In "real time", I am still waiting for my transplant.  However, since the idea to put this journal together did not strike me until recently, I am still working on detailing past events, instead of relatively recent ones, as will be the case at some point soon.  And since my blog entries up to this point are not simply random events as the time passes, but more similar to chapters of a story, I would be remiss in not pointing out to those new to reading blogs, that the best way to understand the big picture is to start from the oldest entry, and work forward through each post to the newest.  That may help my ramblings make a bit more sense!

That said, I've got something that I'd really like to say about my current state.  The last few days, for really the first time, I have really been getting a bit low.  Don't know if it is the holidays, if I'm just wearing down a bit, or if it is just the natural progression of this lovely disease.  Regardless of cause, I'm not typically the "woe is me" type.  And needless to say, it's no fun.

It is at this point that I have most noticed an unusual phenomenon that I truly didn't anticipate.  While I certainly hoped for and deeply appreciate all of the support of my wife, family, friends, and neighbors, there is one group whose support I didn't really anticipate -- at least to the extent that it has so far been shown.

I am, hopefully, about to join an extremely select fraternity -- A small group of those who have, through the benefit of a generous donor and a skilled medical staff, received a second chance at life.  And it is those folks who I have significantly misjudged.

You see, I anticipated that, when I came into contact with this group, I would get that gloom and doom attitude that I really am not a fan of.  However, I have found that, to a larger and larger degree, those who have been down this path before me not only are appreciative of the gift of time and life that they have been given, but are quite ready and willing to generously give back their advice, support, and anything else within their power to those who are in the process of "joining the club".

For those who have taken the time to email or post comments here, and for those who I have come into contact with through online and other groups, this is directed to you and those like you.  I owe you each a heartfelt thank you.  I also acknowledge that the debt I have incurred to each of you cannot possibly be paid directly -- and that is why, once I am back on my feet, I intend to do all within my power to raise awareness about, and assist in supporting, those who may be the new members of tomorrow and beyond.

For those who have not yet advanced to the point where I currently am physically, I cannot encourage you enough to open up and listen to the people who have been there before.  Do not let your pessimism about their intent or attitudes cloud your judgment, as it did mine.  This is not to say that all will have good advice for your particular situation -- but rather to encourage you to at least open a discriminating ear to try to separate the advice that may be misguided, or that you do not need or desire, from that which is invaluable.  Do not, as the old saying goes, throw away the baby with the bath water!

OK -- 'Nuff said.  Back to my story...

Perhaps the healthy option wasn't the best option...

Back to the order...  I had ordered up a chicken fruit salad, which had romaine lettuce, grilled chicken, and many types of fruit -- Honeydew, cantaloupe, oranges, and bananas.  Now, in retrospect, I can recognize the commonality between these fruits -- All have HIGH POTASSIUM levels.  But at the time, I wasn't really with it enough to think about it.

So, I began to eat the salad...  And within about 15 minutes, I became dizzy, and started to get extremely nauseous.  Turns out, your body's protection against more potassium when it has too much already, can be sending it back out the way it came in!  And that, my friends, was what was about to happen here.

I stood up to try to reach the bathroom, but was too dizzy, and knew I couldn't make it.  I grabbed a small basin from the table next to the bed (knowing full well that it wasn't going to be big enough, but beggars can't be choosers)!  As I started to return my dinner, the Nurse's assistant that I had given such problems to was walking by the room.  Like a true professional, she ran for the room, grabbed a larger basin, swapped the two with me, and make sure that I didn't fall off of the side of the bed -- All in one quick move.  Truly impressive, especially given the problems that I had inadvertently given to her earlier.

When all was said and done, I gave her my most sincere thanks, but she assured me that it was just her job -- Imagine that?  I then knew immediately that this young person would become one of the great ones -- After feeling startled and upset about my reaction (although not a bit angry or upset with me, only for me), she then did not hesitate to help me at a time when most of us would have turned and walked the other way.  Kudos to you, my friend, and know that your hard work that night was appreciated!

Quiet at last... But was that good or bad?

With my wife and sister gone, and the nurse having stepped out of the room, it became eerily quiet.  My mind wandered over all of the things that I was thinking in the ER -- How did I end up here?  Why me?  Would my heart or kidneys end up damaged, and what could I do if they did?  And, even though I knew it wasn't in everyone's best interest, I really wanted my wife back to go through this with me.

The ER Staff had started an IV, but were not giving me a tremendous amount of fluids.  Therefore, I was just as dehydrated, if not more, than when I came in...  And since hospital rules require 2 lines already set up and in place for each patient,  I knew what was coming next.  And although I'm not a big fan of being poked, I usually don't mind it too much.

However, when I get dehydrated as badly as that, my veins tend to roll and it becomes almost impossible to stick me without considerable pain.  Therefore, when the ER gave it a few tries and failed, they sent me up with only one.  Hence, the new nursing assistant now stood at my door, carrying all of the necessary needles and tubing to get the line in.

"Ready to give this another try?" she asked?  "Sure.  Why not?"  I answered, but first confirmed with her that she knew about the dehydration and the veins.  She had also clearly taken the time to read my chart, so she was well aware and I could tell that she was trying to be as gentle as possible.

"Little poke here...",  followed by "Hmmmm".  A sure-fire indication that the vein had rolled on her.  Words that I have heard many times before by this point.  We laughed, and she admitted that I called it right!  She soon tried again, and again was being very gentle.

And then, it hit me like a ton of bricks...  I know that my arms get very sensitive when they are dehydrated, and I'm not sure if she just missed, if the stress of the whole situation just got to me, or if she hit a nerve, but whatever it was the pain was excruciating.  It startled me, and I jumped and shouted out in pain. The nurse, being very young, was also startled, but managed to quickly calm herself and pull the needle out.  She apologized over and over -- and knowing that it probably wasn't her fault, I told her not to worry about it at all.  However, I could tell that she was a bit shaken by my sudden outburst, and I felt pretty bad about it...  Soon after, the nurse came in, and after a bit of prodding (painful, but nothing like I had just felt), she was able to get a line in, but just barely.. And so that task was given up on for the night.

I hadn't eaten in hours and hours, and the doctor had OK'd me to get some food.  The Henry Ford Hospital near my home is a beautiful new facility, with all new large private rooms, and many innovative features.  One of the features is that the kitchen is open 24 hours -- and the patient can call any time to order a meal from right off of their menu.

I opened the menu looking for something light.  I ordered it up to the room, and they told me it would be there within 30 minutes.  About 20 minutes later, a cart came up to the room with the meal that I had ordered.  Certainly not the only reason to choose a hospital, but a very, very nice feature nonetheless.

And then I started eating the food... But perhaps I should have considered my options a bit better...