Things I Learned from My Near-Death Experience

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On the day I was discharged from the hospital, my oncologist told Maggie and I that he had ‘no idea I was THAT sick… it was a great learning experience for him.’

Can you believe that?  If my primary caretaker had ‘no idea’, who the hell should I trust?  I’ll tell you what though; this near-death experience taught me a lot, too!  Here are some of the many things I learned – some frivolous and some deadly serious.

Hospital Time

The world comes to a complete stop when you’re in the hospital.  Three weeks is an eternity.  I should be happy… I was originally scheduled to be in for five weeks!  I was bedridden for 17 of those days where my feet never even hit the floor.  It was only the last several days where I made such rapid recovery.

Maggie visited every single day for no less than six hours.  Often, she was there for nearly 10 hours!  Those were the ONLY moments when time actually moved and it was always far too fast.

Maggie left me with all kinds of books and magazines to read.  I would read several chapters in my book; read a couple of magazine articles; when I looked at my watch, only five minutes had passed!

Calling for help was a joke.  I was in ICU (Intensive Care Unit) for over a week.  When I finally got moved upstairs to a regular ward I was still completely dependent on the nurses to clean me up as I had a catheter running into my bladder and was wearing diapers to catch the back-end mess.  Pressing the help button was always replied with, “Be there in just a minute.”

Translated in hospital time, that ‘minute’ could be anywhere from five to forty-five minutes.  One night when I was finally off diapers (but still on the catheter), I called for a bed pan as they had me on heavy laxatives.  I had to go… NOW!  Well, it was five minutes to get the bed pan to me – just in time!  The nurse said, “Call me when you’re done.”  THAT was a different story.  Have you ever sat on a hard plastic most-uncomfortable bed pan for forty-five minutes with dirty diarrhea sticking to your butt?

Yeah, that’s hospital time!

Who Says Hospital Food Tastes Bad?

For most of the time I was in ICU I was fed intravenously.  When I was finally able to eat on my own they put me on a strict liquid diet – jello, juice and tea.  By the time I got my first solid bite, I was ravenous.

Yes, hospital food is bland.  But don’t eat anything solid for well over a week and I’ll tell you what… that stale, cold sandwich (it was well after lunch time) they scrounged up for me was the absolute BEST thing I ever tasted.  Whoever says hospital food tastes bad just hasn’t been hungry long enough.

Portion Sizes Magically Change

When I first got sent to the upstairs ward after coming out of ICU, I had absolutely no appetite.  The meals they brought to me looked gargantuan and I nearly vomited just at the sight of so much food.  Maggie made darn sure I ate a least a couple of bites though.  She knew that this was the only way I was going to get my strength back.

Within days, the portion sizes magically decreased as I was able to eat more and more.  I swear, on my last day in the hospital, the portion size had shrunk down to virtually nothing for breakfast.  I was so hungry that I asked Maggie to bring in some extra food!

Maggie was there in the hospital with me every single day. She saw what I had for lunch and dinner.  She swears that the portion sizes never varied.  I learned that the difference between being hungry and having no appetite GREATLY affects your perception on food proportions.  Quite amazing!

Walking Looks Easy Until You Try It

As I mentioned above, my feet never hit the floor for over two weeks.  When I was finally unplugged from the catheter and able to go to the bathroom on my own, I thought it was going to be easy.  Heck, the bathroom was just steps away across the room.

Sitting up in bed with my feet dangling off the edge was an experience.  I was huffing and puffing as my breathing was still quite compromised.  Hitting the floor was going to be much harder than I thought.

Thank goodness Maggie was there holding me.  My left foot hit the floor first and immediately collapsed.  I had lost a lot of weight by this time, most of it now muscle mass as I had little fat left to lose.  My weight had plummeted to 120 lbs!  I had NO STRENGTH at all to even stand up.

I was determined though.  I did eventually get both feet on the ground and just stood there for a minute or so while Maggie held me up.  I was stunned that it would be so hard!

My first steps were mere shuffles.  I felt like 80 years old.  I clung on to Maggie as I took three steps forward.  I had to stop to catch my breath.  I went backward three steps and plopped myself right back on the bed.  That was more than enough of a work out for my first try.

The most amazing part of this story is that within the next five days, I was walking unassisted a couple of times around the hospital corridors!  I was off oxygen and didn’t need the walker or anyone holding me up.  My recovery shocked the doctors and even surprised me.  That’s why they sent me home two weeks ahead of schedule.

Want to Lose Weight Fast?

Yes, I’m being facetious here.  Last January 11 I weighed in at 145 lbs.  I was running stairs in my 22 story building, up and down for five circuits in a row.  What a difference a year makes.

The combination of chemo and all the complications that evolved basically shut me down.  Weeks before finally getting admitted into the hospital, I wasn’t even able to get out of bed to go to work.  It’s amazing I wasn’t admitted a lot sooner.

When I first entered the hospital, I was already down to a personal low of 130 lbs.  Three weeks in the hospital saw me shed another 10 lbs.  Again, it was all muscle this time as I had no more body fat to lose.  I was basically skin and bones.

At the time of this writing, my weight is creeping back up towards 125.  I expect to hit my target weight of 135 by the end of this month.  My appetite is definitely back in full force!

Your Family and Friends Are AMAZING!

I will attest to the power of prayer and well-wishes.  There is no way I could have made the rapid recovery I did without the prayers and wishes from my many relatives and friends.  I thank you all profusely.

The support in gifts of food, especially from Maggie’s friends and co-workers is also acknowledged as most appreciated here.  Maggie was running herself ragged all the time I was in the hospital.  To have those soups and casseroles prepared, plus all the little boxes of cookies and treats were truly a blessing!

And speaking of Maggie…

A Whole New Level of Advocacy

I knew this lady had fight and fire when we first met.  Her two previous abusive relationships had taught her not to take crap from anyone ever again.  I’ve caught her wrath on several occasions and I’ll tell you, Maggie is not someone you want to mess around with when she’s onto something.

This was no more evident than when I was in the hospital.  The biggest lesson I learned here is that there is no one – let me repeat that loud and clear – NO ONE who cares about you as much as your immediate family.

When I was dependent on the nurses to clean me up, they did an adequate job at getting the big stuff.  However, when Maggie checked me she would often find brown and yellow streaks stuck to my butt.  She would re-clean me to her standards which are nothing less than perfection.  Because of my much-weakened immune system, she knew that even the slightest mess could well lead to further infections.  She was diligent with my cleanliness to the point of obsession!

When the nurses weren’t available, she took it upon herself to clean up my entire load.  She told me I would do the same thing for her and you know what… she’s absolutely right.  You do what you have to do for your loved ones, no matter how disgusting or distasteful it may seem.

Where Maggie truly shone was in her dealing with the doctors and nurses.  She became my personal advocate.  With notebook in hand, she plied the medical team with questions, stopping them to clarify their points and to spell out unfamiliar words.  She then went home after visiting with me for the entire day to put in another four to five hours Googling all she had picked up.

When Maggie returned the next day, she was armed with information and even more questions.  The specialists in ICU were the most helpful, answering every single one of Maggie’s questions and concerns.  Upstairs on the general floor however, it was a totally different story.

Is it a Passion, or Just a Job?

You can easily tell the difference between someone who is passionate about what they do compared with others who merely have a ‘job’.  In the general care ward, things had to be ordered by a doctor before the nurse would even help you.  I had one nurse who apparently was new at her job.  She was so unprepared and actually paranoid to do anything that was outside of her tightly defined job description.  She had to think about opening my curtain for me, lest she get into trouble!

Mostly it was the attitude of the staff on the general floor… ‘it’s not my job.  You’ll have to wait to talk to your doctor.’

OK, fair enough.  Here’s where it gets really nasty.  My own oncologist – my primary caregiver – as I already mentioned didn’t even realize that I was THAT sick.  That was just the tip of the iceberg as Maggie and I would soon find out.

He came up for a visit one day… no folders; no preparation.  Basically, he could have been a friend or relative visiting for all the value he added.

Maggie broke out her notebooks and started firing away.  The doctor looked nervously at his watch.  His body language clearly told us that we were not important… he had other patients to ‘visit’.

At one point it was obvious that he was losing his patience and was irritated with Maggie’s direct questioning.  He asked her, “Why is it important that you need to know that?”

He left almost immediately after that statement.  Maggie was FURIOUS!

Within another minute or so, the infection specialist from ICU came to visit and answered all of Maggie’s questions, the biggest one being, “What EXACTLY did Russ have when he was in ICU?”  The specialist clarified that it was a rare type of pneumonia that if left unchecked could have been fatal!  I was treated not only with anti-biotics but also anti-virals.  I was one of the fortunate ones to respond so quickly and positively to the treatments.

The funny thing is, the questions Maggie asked the specialist were exactly the same ones she asked my oncologist.  We would have expected him to be apprised of all the reports from the various specialists.  Instead, my oncologist wasn’t even aware that I being treated in ICU!

At this point, Maggie knew far more about my condition than my oncologist.  With the encouragement of my sister Cie, a registered nurse and patient legal advocate in Massachusetts, Maggie went on a search for someone – ANYONE – to call my oncologist out to accountability!

We remembered that there was such a person down in the chemo clinic.  She was the patient/doctor liaison.  When you talked with this lady, things got done.  And that’s exactly what happened.

Maggie and I took a walk down to the chemo clinic to see if we could find and speak to the liaison.  We were told that she already had several appointments lined up for the afternoon.  However, we put in our request for a visit and went back upstairs.  It was time for Maggie to go home and meet the girls at the bus stop.

To my amazement, the liaison came to visit me within minutes after Maggie left.  She told me that she had heard about my case and that it became her priority this afternoon!  She listened to my story for about 10 minutes.  Maggie had asked me to get some printouts of the reports as I had a pending operation coming up next week.  For the past several days, we were being bounced around by all the buck-passers on the general ward.  The liaison had the reports in my hands in five minutes!

I told her that Maggie had notebooks full of questions.  She asked me if I would like her to return to address both of us to which I replied, “OF COURSE!”

True to her promise, the liaison was back again shortly after Maggie arrived.  She brought along my oncologist and watched carefully as Maggie began her battery of questions.  The oncologist still showed incompetence in his replies but at least he had my binder with him so he could look up things.

Maggie had lost all trust and faith in my oncologist.  She vowed to get another caretaker for me, or at the very least, get a second opinion when I left the hospital.

How Would You Like to Go Home Today?

The time from the first wobbly touch down on the floor to the time of my discharge was incredibly fast.  I went from a prognosis of being in the hospital at least another two weeks to, “How would you like to go home this afternoon?”  Part of it was because the hospital desperately needed the space, so anyone who was even close to discharge got the boot.  However, the discharge nurse made a great point which I believe to be true when she said, “You will recover much better from home.”

Yes, truer words were never spoken.  While I admittedly have a very long way to go to being 100%, I have absolutely flourished at home.  Being a totally independent person to begin with, there is NOTHING compared to being home, free to follow your own routines.

Of course, I still have my big watchdog Maggie who makes darned sure that I don’t over-do myself.  Believe me, there’s NO WAY I EVER want to be that sick again, so I’m listening to my body, resting as often as I need.

My biggest job today is to phone my family doctor to get a referral to another blood specialist who will either take over my case or at least give me a second opinion… of course in a competent and professional manner.  Maggie and I now know what to look for!

After my near-death experience it’s nice to report that I am well on the road to full recovery.  I’m aiming at summer time but I’m willing to give it a full year if necessary.  I took a serious hit and I know it will be time before I completely mend.

As for getting better… you gotta Love That Feeling!

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