A Hard Life that Gets Harder

Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

  • 1 Peter 5:6-7

The photos are three tiny photos that I keep of my wife on my desk.  I did not know her when the photos were taken.  She was happy, even in hardship.  The two larger of the photos were taken after her father returned from Indonesia where she was born to the Netherlands the first time.  According to the back of the photos, in Groningen when she was roughly one year old.  Groningen is in Friesland, the most northern province of the Netherlands.  Her father was Friesian.  Soon after, they returned to Indonesia when her father found work there.  But then the war of Indonesia’s independence forced them to leave again.  With little prospects of finding a good job in Holland, they emigrated after child number six was born, coming to the U. S. A.  Until they got the green card to stay, they lived in an apartment in New York City, NY.  Within a week of being sent back to Europe, they found a sponsor in El Paso, TX.  The final photo in the middle is her first school photograph.

I wanted to use the photographs for a pleasant occasion. Maybe doing a disjointed biography of my wife and her many experiences on at least four continents.  But I am going to go to a dark place instead.

On the day that this is being written, my wife turned in a survey at the dialysis center.  She had a meltdown while there and came home without being dialyzed.  And she is preparing for surgery tomorrow (again based on the day of this writing, about a week ago).  The surgery is the third surgery done by the surgeon in the past year to have a viable place beneath the skin for dialysis.  The first was a fistula a year ago.  It did not grow properly according to the dialysis center.  Then he installed a graft a few months ago.  Due to a mistake made at the dialysis center, it immediately clotted, plugging the graft.  This surgery is a combination of an angioplasty to balloon the graft and remove the clot, and surgery to extend the graft to make it larger and more accessible.

I understand the nuances of this dialysis system.  You have two needles, like IV needles.  One puts solution and filtered blood into the bloodstream and the other draws blood from the bloodstream. If the needles are too close together, the return blood then gets drawn out and no other blood is ever filtered.  Thus, where they stick the needles must have some distance of separation.  That distance is subjective.  We do not know if the past year of three surgeries and monthly angioplasties done at the catheterization lab were all wasted time since the dialysis people want their jobs to be easier.  Ooops.  I actually wrote that down.  Please assume many “allegedly” additions from here.  I am in a mood.

What brought on the mood?  Oh, my wife’s meltdown for one.  The surgery is scheduled for a dialysis day.  That means that she had to go in on an off day to make up for it.  They scheduled her for 10:40am.  We arrived about five-minutes early.  She was not taken.  She was told to wait in the lobby.  I gave her the bag containing her blanket, the ear buds to listen to the television, a book, a neck pillow, etc.  I drove home, and as I walked past the kitchen table, I saw the survey that she had to return that day.  I called her, but she was calling me at the same time, to come pick her up.  They had screwed up and failed to put her on the schedule.

I grabbed the survey and drove back to the center, two hours of wasted time (other than finding a topic to write about) and over ten dollars in wasted gasoline, wear on the tires, etc.  Her story was that after twenty minutes of waiting they admitted that they would not have another open spot for a long time.  She told them that a nurse from the previous day put her in the time slot for 10:40am, due to a man being in the hospital and his slot was available.  Then one nurse lied saying that my wife had clearly told her a time much later.  Then as my wife stormed out of the center, back to the waiting room, there was a machine that magically was open, available and disinfected for her use.  She refused.  She had been called a liar.  She had been humiliated.  And she knew that her blood pressure and pulse would be so far off due to her anger that the machine would shut down due to those vital statistics being outside acceptable range.  Besides, she needed to calm down before the surgery.  She was already scared about that.

I told her that the nurse’s made-up lie about the later time was quick math on her part.  She checked the clock, and she figured how fast it would take to clean up a machine that they had not planned on using that day due to not having enough staff (never having enough staff), and she blurted out the time, fully knowing it was a lie.

And my wife considered why they suddenly had a machine ready when they insisted that they did not until she walked out.  They bill Medicare and our supplemental insurance for a ton of money three days each week and this week it would only be twice.  They needed the income.

Oh, and one of the nurses told my wife on the way out of the center that if she was that angry, my wife did not have to come back.  She did not say the words “I hope you die” but that was the same thing.  Not coming back to the center means not getting dialysis.  Without dialysis, death is not far away.  What a cruel thing to say to someone!!!!

Ouch, I should have said allegedly a few times, again!!!

So, my wife is going into surgery after not having dialysis for two days and the next dialysis is in another two days after that, three off days in a row.  With a bout of diarrhea last week, that means four dialysis sessions over two weeks instead of six.  She will have a lot of retained water that may never come off as a result.

That brings me to the survey and a harsh reality about living with kidney failure or living with someone who has kidney failure.

The first page had only two questions.  I only suffered reading through the first 2-3 pages before realizing that only my wife could answer the questions, but I knew her answers for the first two questions.

The preface to the first two questions was: Over the past two weeks, how often have you felt …

Question 1: Disconnected, no interest in doing anything.

Question 2: Depressed, despondent, lack of hope.

The options were: None at all, once, a few times, nearly all the time.

My wife chose “nearly all the time” for both questions.

My wife NEVER complains about not feeling well.  I go with her to doctor visits to prevent her from answering the question, “How are you?” with “Fine, could not feel better.”  She is getting better at telling the doctors her aches and pains, but even then, she is selective.  Why?  Her parents drilled into her that she was an immigrant and if she complained too much, she might get deported.

But let’s be honest.  She is in “End Stage Kidney Failure.”  End of what?  LIFE!!!!!  How else should she feel?  Yes, I know.  As a Christian, she gets to be with Jesus that much quicker.  Often, when my wife has spent a lot of time in the Bible, studying, she is happy, cheerful, and wonderfully expectant on meeting Jesus face to face.

But even Christians are human.  The side effects of kidney failure kick in.  She never has any energy.  If she thinks she does, she decides to cook supper for us, but halfway through, she is calling me to come to the rescue.  Now most of our meals are from me cooking.  Today, she has something in the slow cooker.  She had enough energy last night to do some of the preparation.  This morning before the “no dialysis” fiasco, she threw everything into the pot and turned it on.  Now it is simply stirring it on a rare occasion.  Other than falling asleep and not doing all the stirring, she could handle that.  But she fixed a huge portion so that we did not have to cook tomorrow after the surgery or maybe not the next day either.

Another side effect of kidney failure is “fuzzy brain.”  She thought she had Alzheimer’s Disease and so did the neurologist, but after a great improvement that Alzheimer patients never get, he thinks the fuzzy brain is coming from lack of sleep and stress.  Two other side effects of kidney failure, but the fuzzy brain is intense confusion, easily amplifying whatever stress is already there.  Emotional bursts, but never pleasant ones.  Constantly forgetting and then calling you a liar when it is her who forgot, scared that she is forgetting – opting out of that thought, thinking that a verbal shouting match is preferable.  Then, later she apologizes followed by the “why have I not died already” lament.

Can I state this once, although I think it hundreds of times each day.  Living with someone who has kidney failure is hard work.  Forgive me if I have not vacuumed in a few days.

My wife held her brother’s hand as he breathed his last after refusing kidney dialysis.  She could think of a few better ways to leave this earth, but she wants to have some dignity.  She wants to feel like a human being more than once each month.  And then it is “human being that is in pain.”

And let me start and end this paragraph with allegedly.  ALLEGEDLY.  She does not want to go to a center where smoke breaks, lunch breaks, sanity breaks are more important than the health of the patients.  She is not the typical patient, but they only have one way of doing what they do.  Is it incompetence, a lack of training, or a lack of caring?  All of the above?  Are they understaffed?  Are the machines very old and the newer machines adjust for these patients who are atypical?  Does it work like everything else on earth, it all comes down to money?  Or are they extremely, extremely, extremely lazy?  ALLEGEDLY.

My wife is Eurasian.  She is exotic.  She is not typical in any respect.  Hooking her up to a machine and pressing the “typical patient” button will not work.  But the strange thing is that some people get a fistula and it immediately works, after the two months after surgery for healing and growth.  Others need one or two fistulagrams (angioplasty) and then it works.  Some of the tougher folks need a graft, a second surgery, and then it works.  NO ONE in all that we have interviewed in the waiting room has had to have their catheters replaced, had the fistula, monthly fistulagrams with no good result, a second surgery to install a graft, and now a third surgery to lengthen the graft.  NO ONE!!!!

Add to that, her pulse goes into a form of atrial fibrillation (A-Fib) by racing if they take too much fluid off during dialysis.  It happens, but rarely.  Add that to the above “NO ONE” and you have someone very exotic, and the nurses have no clue how to adjust the machine for her needs.  They simply fail at removing enough fluid and she keeps getting more water retention.  ALLEGEDLY.

And this does not even include when a technician, who still works there and my wife refuses him to touch her, inserted a needle incorrectly. We went to the emergency room with her needing to be defibbed in the ambulance due to massive blood loss. They stitched her fistula in the ER, just before it quit working, and after my wife was out of danger (too little blood left in her system to place any sizable needle for an IV to put blood back – using a butterfly needle used on infants since her veins had collapsed)… I called the pastor since my wife was supposed to be liturgist on Easter the next day, and I could not describe the scene – so much blood everywhere. The nurse who was totally covered in my wife’s blood due to arterial spray came over and yelled so that the pastor could hear, “So much blood, she has gotta be DEAD!!!” Then she laughed loud enough for the pastor to not faint. I was trying to think of a police drama where the guy was shot a hundred times, but this was messier, redder, wetter! And my wife swears that the technician gives her an evil look that says without saying “Next time, I’ll finish the job!!” But that may be that he hates people who refuse to let him touch them – the list is growing. ALLEGEDLY!!!!

And one last ALLEGEDLY, but this one seems well documented.  The center lives on the premise of blaming someone else.  If there is no one to blame, that is a nurse, doctor, or bus driver that delivers a patient too late and messes up the schedule, then the patient is blamed.  My wife drinks too much liquid, thus she is retaining too much water, rather than them taking more fluid out.  My wife’s blood pressure was too low, so that shut the machine off rather than giving her a full session.  Etc. etc. etc. And everyone in the waiting room has similar stories in that regard.  It is always, always the patient who, without a kidney transplant, has their days numbered who is at fault.  Everyone in the waiting room with at least one of those stories, none with the volume of stories like my wife. ALLEGEDLY!!!!

Please, if you are dealing with patients who are fighting for their very lives due to a terminal disease, give them enough dignity by not blaming them or their bodies for the mistakes that you as a nurse, doctor, or technician do.

And the incident the day before Easter led to my wife taking herself off the liturgy rotation. She did not want people counting on her when she could not count on her own body. The woman in charge gave her dirty looks for months. She had to redo her schedule and work around people not being there and she had to go out and beg other people to take my wife’s place. A little work compared to almost dying in the ER. I do not think that compares. Church family should have some compassion, and I will have to admit that I have failed there once or twice. This world has a lot of pain in it, but then we get to be with Jesus, if we trust in Him now.

My rant is over.

God, give me the strength to forgive.  I have no idea what problems those nurses and technicians face in their home lives, but it is so, so, so hard to live like this. The Holy Spirit will have to translate the next bit, but sometimes you just want to go… Arrrrggggghhhh! Amen.

Hopefully, I have written about how my wife is doing fine after her surgery, but it will be another week or two before they can start using the repaired graft.

Soli Deo Gloria.  Only to God be the Glory.

11 Comments

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  1. Hugs Mark. It’s tough being a caregiver too.

    Liked by 1 person

  2. I believe evil is running rampant more so than ever. We live in the end times,,,and people are just plain evil. The health care system seems to be the one that is benefitting from the pandemic, financially, but is like everywhere else where there’s not enough help.
    Sad, that they cannot admit fault and then say those things to your wife.
    I liked your prayer, that even though you have have valid feelings, you must forgive and if you cannot find forgiveness, you asked God to help you with it.

    Liked by 1 person

    • And now, as if by a miracle, the graft is working. The graft worked before and then suddenly clogged. The fistula worked, but never adequately. Time will tell, but we are sensing that the dialysis center is figuring out that we have had enough. Or is it the bully syndrome? They bully you until you finally fight back.

      Like

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