Future Expectations

Now that I’m home and have a ‘m&m’ status (minimal movement) I have plenty of free time on my hands.  There is, after all, only so much TV I can watch and my eyes can only take so much reading, and I did miss a couple of weeks of posting my blog, so now that I can sit up for a while without having my leg elevated, I am once again back at my computer.

Given my recent experiences, you should not be totally surprised by today’s topic…. Hospitals.

As a reminder, I was raised by a nurse.  Mom was a Navy nurse during WWII and stationed in the south Pacific immediately behind battle lines, in other words she was in a Navel Mash unit.  I grew up on her war stories and as a result grew up having a profound belief/trust in science/medicine.  I never fulfilled Mom’s desires for me to become a nurse, (I can’t even watch my own blood be drawn) but most of my working life was in tertiary positions in the medical field.  I worked for 13 years at Hoxworth Blood Center, managed a multi-specialty medical group practice and worked for 12 years at Ethicon Endo Surgery (a J&J medical device company). 

I have had no issues with taking vaccines as recommended, no issues following doctors’ orders when required, basically been a good, compliant patient anytime in my life when required.  However, there has been a bit of a shift in my attitude toward hospitals over the last 10 years. 

First let me say, while I do not have in-depth knowledge of hospital dynamics, protocols or staffing issues, I certainly do understand that there are pressures on hospital operations that have been in place for a few years.  But I still have some gripes.

They began when my brother, Jim, lived with us during the last 6 years of his life.  During those 6 years I took him to the emergency room 4-5 times.  Each time I became more and more frustrated with the entire experience of being in an ER.  None of these times was Jim in any kind of extreme medical emergency, but still waiting 4, 5, 7, 8 hours to get medical help and either get Jim admitted or released was just plain ridiculous.  As a matter of fact, during the last time, before his death, when the staff told me they would be 4-5 hours doing tests, etc, I gave them my phone number and asked them to call me when Jim was ready to be picked up.  Harsh I know, but by that time, I had had it!!

Making a shift now to my most recent hospital experience in Prescott, AZ….it wasn’t too bad.  My ER experience was pretty good, only I assume, because my dog bite wound was very extreme.  Once the triage nurses saw what they were dealing with I was immediately moved back into an ER exam room, no dilly dallying around on that one.  I did not have to wait hours to be examined by an ER Doc and decisions were made rather quickly. 

But…after 9 days in the hospital I learned some very real truths regarding the hospital experience. 

1.   No matter what the protocol for your situation is, each nurse will have their own method for implementing that protocol.  You wouldn’t think that would be the case, but it became very apparent to me rather quickly.  Some of the deviations were insignificant, but as an example, my plastic surgeon who performed both of my surgeries was very explicit that no one but himself and his wound care team were to touch my left and right legs.  One nurse in particular I almost had to physically stop from ignoring those instructions…. that woman was scary!

2.   Don’t know if this is the case throughout the US, but in Prescott, AZ, 80% of the nursing staff were ‘traveling nurses’…. they work in that hospital for 8-24 weeks, then move on to other locations.  You could tell the difference between a hospital staff nurse and the visiting nurses…. the hospital nurses were definitely more stressed.

3.  Whether traveling or not, some staff just doesn’t know what the hell they are doing.  For the 9 days I was there, 8 of the days I was receiving an IV antibiotic drip (to prevent infection).  There were certain nurses and nurse aids that I just did not want touching that IV.   First of all, the nurse aids are not even supposed to touch it, that is a nurse duty only.  One nurse aid came in, started messing with it, I asked her to leave and get a nurse, and the nurse had to take everything apart, throw it all away and start over.  Geeze.

4.   Many, many years ago I learned to trust my instincts.  That came into use while there.  Staff worked 12-hour shifts, 7am-7 pm and 7pm – 7 am.  One night after a shift change the night nurse came into my room.  I don’t know what it was, but immediately my hackles went up and I was on guard.  I think it was that the first impression I got of this woman was that she was very angry.  I had her for 3 nights and I decided it wasn’t just a bad day for her.  Every contact with her was the same…. she was not a happy camper.  She was the same person who wanted a hands on with my wounds, contrary to doctor orders.  She eventually shared with me that the minute her youngest child was an adult she was going back home to Russia and that us Americans have no idea how good they have it over there.  I have no idea why she is in the US, but I hope her journey home is successful.

So these experiences and a few others do not diminish my respect and regard for hospitals, but they have redirected my expectations regarding any future experiences.  

I just hope I can keep them to a minimum in the future.

 

 

TREASURE CHEST

 

Seems like an appropriate time to post a Christmas message.

I’ve missed my last few weeks deadlines for when I post my blog, and as most of you know who read my weekly blog…for good reason.  But as Christmas Day has arrived it is without a doubt the quietest Christmas Day ever, by request.

The two weeks approaching Christmas Day were the most chaotic and scary days of my life. Once I got home, I just wanted peace and quiet.  I needed to renew my energy, thankfully that has been achieved.  I am certainly not out dancing in the streets, but I am alive and moving toward wellness, and that has provided me an opportunity for reflection.   

My first thoughts go to my immediate family.  If they were still of this world and we were visiting on Christmas Day we would spend a good part of the day playing cards or we could be out golfing, bowling, on a road trip, or sitting around playing board games.  Any of those activities would make the day perfect.

Or, if I was Florida, I would be spending some time with my childhood friend, Nancy and while we couldn’t do much shopping on Christmas Day, we could have a sumptuous lunch out and a walk on the beach.  But, also like my parents and brother, Nancy is no longer with us either.

Finally, it was a year ago this week that my, dearest friend, my kindred spirit, was diagnosed with ALS and only lived another 10 weeks.  But if Karen were still here, we would be out hiking trails, or riding bikes or skiing down a mountain top.

I know, I know, this all sounds dreary and sad, especially for such a glorious holiday, but I have pulled these precious memories from my treasure chest of memories and they make me pause and be thankful, that these folks entered my life when they did, to each one, even though they are no longer here, I am so grateful….I have a smile on my lips and warmth in my heart for the gift each person was to me….I thank them on this Christmas Day 2023. 

Too Little, Too Late

A long-standing practice of mine is every Sunday morning watching CBS’ Sunday Morning with Jane Pauley.  Love that show, it’s what I do while eating Sunday morning breakfast every week.

However, this Sunday morning (11/26/23) the lead story stirred up my emotions …. none good.  The story was regarding the current state of ALS (Lou Gehrig’s disease) and patient care of the same.  The episode highlighted a few individuals who have been living with the disease and the development of medicines that could help manage the progression of the disease. 

If you are not aware, ALS is a fatal disease of slowly degenerating muscle loss, currently with no known cause and no known cure.  It is very rare, only about 20,000 cases per year in the US.  Once diagnosed all that can be done is to manage the care of the disease, and there are a few medicines that can help with that.  This episode focused on medications that have been recently approved by the FDA and those still pending approval.  The story focused on patients who have organized to push for FDA approval and making allowances for medicine use before approval…. the logic being that the disease is fatal, so why wait.

My beef with the episode is that it did not focus, at all, on how difficult it is to diagnose this disease and the need for more physician training to successfully diagnose.  Why my passion around this aspect?

Karen Specht was the one friend in my life that I considered a sister by another mother.  Spring 2024 would have been the 50^th anniversary of that friendship.  She was my travel partner; we’ve traveled the world and the US together over those 50 years and had so many adventures I can’t begin to name them all.  In 2017 we were in Costa Rica for 2 weeks.  It was during that trip that it became very apparent that something was wrong….and thus began the journey of NOT KNOWING for 6 years!

Originally Karen and I met in Alaska.  Then I moved back to Ohio, eventually she moved to Wisconsin.  We typically saw each other a couple times per year and talked on the phone every Sunday.  After Costa Rica every time I saw her, I saw a body that was very slowly degenerating.  She could no longer hike the same distances, ride bikes like we used to and on and on.  Eventually it got to where her right leg dragged and she rarely smiled.  The last time I saw her before her death, she fell out of my car twice, and she was very depressed.  During 6+ years she had seen every doctor imaginable and taken every test imaginable …..and no one, no one, could tell her what was going on.  This even from the prestigious Mayo Clinic in Minnesota.  She would go to the hospital; they would run a couple of tests and then tell her nothing was wrong and to go home. 

Now I get it, ALS is very difficult to diagnose…. I get it.  Its symptoms are similar to many other conditions.  But after you rule out everything else, why, as a trained doctor don’t you turn to one last condition?  It wasn’t until Christmas week 2022, when she was told once more that there was nothing wrong with her, her husband flipped out and then they called for a neurologist who ran one more test, came back to the room and announced it was ALS.

Karen died just a few weeks later in March.  Yes, I know that even had she been diagnosed in 2017, she still would have passed.  But for 6 years she would have known what was going on.  She could have used those medicines that are currently available.  She could have had mental health support.  Her life could have been supported so differently.

I can’t even say how much I miss her.  How Sundays seem so empty now.  And how much I hope, that someday, someone will find a cure and a cause, and doctors will know how to diagnose.

For now though, it is too little, too late.