Thoughts from Mark "Hat" Rackley

I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living.
Wait for the Lord;
    be strong and take heart
    and wait for the Lord.

• Psalm 27:13-14

Sitting down, Jesus called the Twelve and said, “Anyone who wants to be first must be the very last, and the servant of all.”

• Mark 9:35

To explain the verses, Psalm 27:14 is the verse my wife quoted most often, but when you add Psalm 27:13 and Mark 9:35, you get the essence of the woman I married.

Note on the Title:  Winston Churchill coined the phrase “the end of the beginning” when Allied forces had won the Second Battle of El Alamein.  Poems have been written with that title, but I am referring to the David Phelps song.  My wife lived a life of servanthood.  She was nice to all she met.  She avoided conflict whenever possible.  And then she surrendered her life to Jesus, lamenting that she could have done much more if she had come to her senses earlier than she had.  But for each of us, this life is only a moment.  And for those who love Jesus, and she did, eternity with Jesus awaits.  It is not simply and end of life, but the end of the beginning of songs of praise to our Lord and Savior.

This is the last episode, and one that I have dreaded since starting this.  The last couple of episodes have not been chronological.  This one will not be either.  My son said that we had to talk about her last vacation, the one he had planned.  I need to start with kidney dialysis.

Kidney Dialysis

In August of 2020, almost exactly two years after getting open-heart surgery, my wife’s kidney failure had reached the stage of needed kidney dialysis.  It was odd.  With most of the other patients at the dialysis center, they could not produce urine.  My wife might only go once each day, but she did so until the end.

With the COVID scare ongoing, but no masks worn anymore.  We had to wear masks.  Within a few months, we needed paper, one-time-use masks.  We found them at the wholesale store.  I cheated and only changed mine once each week, but then, I was only wearing it for less than an hour during those three days.  Hers had to stay on for the four hours of dialysis plus.  The plus is that they weigh you when you show up, check temperature (for COVID) and then there is the logistics of getting you into the chair and hooked up.  Then when dialysis is finished, they take you off the machine and weigh you again.  And when she finally got her graft after the fistula failed, she had to wait for the bleeding to stop, which sometimes nearly took an hour.  For the first year and a few months, it was easy to hook her up, but even then, one technician who is no longer there, would get it wrong.  This same technician is the one, the day before Easter, who hurriedly slashed her fistula.  After she got home, the bleeding would never stop.  We were instructed to take her to the ER.  It is a good thing.  She would have died otherwise.  She lost a lot of blood.

I remember the day in that I had to call the pastor.  My wife was supposed to do the liturgy at church the next day, and the pastor had to make a few calls to set up someone else.  The coordinator huffed that she needed more time the next time my wife could not do the liturgy.  I do not think she liked it when our response was to take my wife off the list of liturgists in that she would never know if she could do it.  This made a fellow church member angry, but it saddened my wife a great deal.  It was one more thing that she loved doing that she could not do anymore.

They first placed her on an afternoon schedule, about 11:00am until 3:00pm.  She stayed roughly on that schedule until about Easter of 2021.

Having gotten the fistula around Christmas of 2020, she had already replaced the catheters once.  Then every six-weeks or even monthly, she had angioplasty work done to open the fistula.  After several attempts, they put in a graft.  Even then, every six-months they would schedule her for another angioplasty.  We noticed it was always when one particular nurse was her nurse that the problems started.  We cannot prove it, but the angioplasties, maybe half, were probably unnecessary.

Two things happened after that near death experience the day before Easter.  The center magically had an early morning slot available.  And two days after Easter, when she showed up for dialysis, she received a packet of information about kidney transplants.  She did not live long enough to reach the top of the list, except for exact matches, and her blood type was not common, just not the most rare either.  But these two things told us that they knew they had screwed up.  My wife refused for the technician to ever touch her again.  They honored her request.

As far as three days per week dialysis, life, at least breathing, continued until it didn’t.

When my wife got the mild variant of COVID (some flu symptoms had been more severe), they put my wife in the corner.  I even quoted the movie Dirty Dancing, in that nobody puts baby in the corner.  Even COVID free, she remained in the corner, with the broken television set, poor lighting so that she could not read, and only one person to talk to, until the end.  It started with COVID, then they shuffled everyone in the room except for her, and then relatively healthy otherwise until the last three months, this time with Shingles.

And by the way, the only patient who made it to the memorial was the lady who sat next to my wife for the last year and a half.  There was love there.

My wife had a few run-ins with the staff.  She was always nice, but there were nurses and technicians that did not much care, except getting a paycheck.  I suppose it is hard getting to know people and most of them will die.

Travel Issues with Kidney Dialysis

We were told that we had to inform the staff 2-3 weeks before we wanted to go on a trip.  They would arrange dialysis at the destination, or even in route if need be.  Our first trip was Christmas of 2020.  We knew which clinic within a week of the request.  We did not know when to show up until the clinic called our cellphone the afternoon we arrived in the Memphis, TN area.  With it being Christmas, my wife had dialysis on Sunday and other odd days to cover the two weeks we were there.  Our son complained that we were there the entire time he had off from teaching school and he could not unwind.  Too bad.  We learned the hard way that travelling with a dialysis schedule is tough on everyone.  Even then, my wife went three days without dialysis on our return trip.  Of course, it was always the patient’s fault even though the clinic in Tennessee was flipping dates so that their employees could enjoy Christmas and New Years.

My wife’s next trip was a flight to Houston, Texas.  She was going for a wedding in the Houston area.  She had one required dialysis, the morning prior to an afternoon wedding.  The clinic was in Clear Lake, an upscale part of the Houston area, where NASA is located.  The receptionist/nurse insisted that she was scheduled for 2:00pm that afternoon, when the wedding was to occur, and her only reason for making the trip.  There were no chairs available.  My wife showed her the confirmation.  She sat in the lobby, demanding to talk to the supervisor or that person’s supervisor.  The receptionist was livid, but magically a chair was available, and she got her dialysis.

She visited family the next day and early that Monday morning, she arrived at the airport to find her flight cancelled.  She called me and cried about missing her dialysis on Tuesday morning.  I told her to not cry to me.  Use that tone when she explained that she could not miss another dialysis session and the cost of having dialysis would be billed to the airline.  She did not even get that far in her spiel.  She said she was a dialysis patient and suddenly she was on a flight to West Palm Beach, Florida.  But then her flight was delayed.  I looked at the schedule.  When her flight arrived in Florida, her connecting flight to Pittsburgh should have already left Florida by 15-20 minutes.  I made phone calls to the airlines, and the only people that would answer the phone was baggage claim in West Palm Beach.  While I explained that the next call would be to the police to find a woman who had early onset of dementia and might be wandering the terminal, they still could not help.  After all, a worried husband could be someone trying to steal the woman’s identity.  Identity was more important than safety.

As I screamed my anger at the phone after baggage claim hung up on me, I got a call from Pittsburgh airport.  “I’m here.  Why aren’t you here to pick me up?!”  Later that night, she explained that the connecting flight faked mechanical issues so that they would be delayed until my wife arrived.  When they wheeled her into the plane in a wheelchair, every passenger cheered and a few got up to give her a standing ovation, tongue in cheek, since they were late getting home due to her.  Yep, say kidney dialysis and airports listen.

Air travel was then eliminated.  There were too many uncontrollable variables.  She only made it on two other trips.  The next one was to our son’s home for a vacation in 2021.  That is the section that follows.  The last was a trip to Texas to her brother’s memorial service about six months ago.  We were only told about the dates two weeks in advance.  We apologized, but we were still within the 2–3-week window.  Several employees at the clinic ranted that it was a month or six weeks’ notice and they could not guarantee they could accommodate her.  I know it was ugly, but I said, “Well, next time someone dies in the family, I’ll tell them to hold on unless it was convenient with the clinic.”  They were surly, but they accommodated us.  On my wife’s last day before we left on the trip, an old gentleman turned to the nurse and said, “I fly out this afternoon on a Caribbean vacation.  Can you arrange dialysis for my trip?”  And the nurse smiled and within an hour, he had confirmation.  I think my wife was abused because she was nice, and they took that as being an easy pushover.

The Last Vacation

Our son wanted us to go with his family to Atlanta, Georgia.  I set up the hotel to the west of Atlanta, and we found a dialysis center nearby, but it was the competitor.  Since we had to go to Tennessee before and after, we set up dialysis there also.  Everything worked extremely well, but the Tennessee people called us the day before to give us a time.  We were used to it by then.

The trip was wonderful.  On the drive to Atlanta, my wife found boiled peanuts and she had a great time with that treat.  We went to the Coca-Cola Museum one day.  We took in Six Flags another day.  The water park was scheduled when she had dialysis.  We picked up a cake, very fancy and very expensive, for our granddaughter for her birthday while they were off having fun at the water park.  The only other free day was spent going to the far side of Atlanta to an authentic Indonesian restaurant, restaurant on one side and Indonesian grocery on the other.  We almost did not have enough room for the groceries we bought.  My son and I even joked about leaving one of the children to make room for the groceries.

It was a wild trip.  My wife again had a grand time meeting new friends at the dialysis centers she visited.

And Then the End of the Beginning

We should have seen the end coming, but we were putting out fires rapidly.  The immediate was on our mind.  In mid-December this past year, my wife contracted Shingles, even having had the vaccine (same as COVID), but they were caught early, and the medication was going to kill it off within a week according to the doctor.  She did not have any new eruptions when she died three months later (to the day), but not all the sores had scabbed over either.

One week after she started the Shingles treatment, she had pneumonia, or not pneumonia.  She had fluid in her lungs, but they claimed not enough for it to be pneumonia.  Okay, treat her.  Forget naming it.  It was thought that the steroids used in treating the Shingles aggravated her COPD.  She was breathing better within a couple of weeks, but she spent a couple of days in the hospital.  But then, they noticed her hemoglobin was dangerously low when she went back to the family doctor, a routine check after being in the hospital.  She went back to the ER, for two units of blood, and a few more days of tests.  She found out while there that dialysis was done much differently at the hospital and she had fewer bad side effects.  For two and a half years, her clinic had not been doing it right, adequate, but it could have been done better, less pain, less side effects.  But they determined my wife had a GI bleed, but the colonoscopy was inconclusive – too much blood in the bowel.  Wow!  Great diagnosis, Doc!!

Her blood count was stable, so she went home.  Then the follow up colonoscopy, unnecessary in that everyone knew what was wrong – blood thinners and diverticulosis combined to leakage into the bowel – but they would not treat until she had another colonoscopy.  She had a heart attack an hour or two after getting home.  Ambulance to the hospital, and she was released two days later, but her blood pressure was consistently very low.  She had a cardiac event upon getting to the dialysis center that Saturday, and she was gone the next morning, just after midnight.

The heart catheterization said that her artificial valve was not opening properly, but they still did not think this an emergency.  They could have flown her to Presbyterian Hospital downtown Pittsburgh, but they thought it could wait until their valve specialist came in on Wednesday.  Their gamble cost her life, but maybe she would have died during the surgery.

But in talking to the urology people, kidney dialysis chemicals stiffen internal organs over time, but she should have had another ten years or more, well past getting a transplant.  But then one of the cardiologists said that kidney dialysis chemicals quickly stiffen artificial valves made from pig or bovine tissue.  My wife had a bovine valve.  But was that it?  In my wife’s “survival” bag, a bag with a blanket, a couple of small pillows, headphones for the fixed television set, and her puffer if she was short of breath, etc.  I found her latest report card.  Her phosphorous was high.  High Phosphorous, over time, can stiffen the heart.  It was barely outside the range, but the nurse wrote with several exclamation points.  “This must come down!!!!”  But then the news lately has confirmed reports that taking the COVID vaccine can stiffen the heart for people who already had a heart condition.

So, I am left not knowing if one or all those things led to my wife’s early departure.  Without those things, she should have had another five years with the artificial valve.  And then, it would not have been an emergency surgery.  I just don’t know.

And to all this, I give praise and honor to God.  Only He knew that the two of us would one day marry each other, and it would truly be until death did we part.

Soli Deo Gloria.  Only to God be the Glory.