The Emotional Roller Coaster Begins

When she reached the man of God at the mountain, she took hold of his feet. Gehazi came over to push her away, but the man of God said, “Leave her alone! She is in bitter distress, but the Lord has hidden it from me and has not told me why.”
“Did I ask you for a son, my lord?” she said. “Didn’t I tell you, ‘Don’t raise my hopes’?”

  • 2 Kings 4:27-28

This is what the Lord Almighty says:
“Do not listen to what the prophets are prophesying to you;
    they fill you with false hopes.
They speak visions from their own minds,
    not from the mouth of the Lord.

  • Jeremiah 23:16

The fruit of that righteousness will be peace;
    its effect will be quietness and confidence forever.

  • Isaiah 32:17

We have been on an emotional roller coaster this year.  A lot of that roller coaster has come from the transplant center.

My wife was supposed to do her annual review in late May or early June.  We never got a notice.  We were supposed to get a half dozen tests done before the review.  We never got doctor’s orders to get it done.  I called in early June and suddenly we were late, it was all our fault, they cannot be held accountable for their schedule and a glitch in their own computer system, and we had to get the tests done yesterday.  One test took two months due to lab technicians leaving the hospitals for reasons unknown.  You would think in a large city with a huge conglomerate of hospitals, one opening might be present within a month, but no.  And because it was our fault that their computer system did not work, my wife was taken off the kidney transplant list.  Administratively, until the tests were done, no losing our place in line.

It is odd that at the time, my wife was considering home dialysis.  She was sick of the lack of care and concern by the dialysis center.  We just needed to get over the inertia.  But with the scrambling for test results, all was put on hold.  One of the tests was a good mammogram, and the results were suspicious.  After three times of testing, we can say that my wife does not have cancer, but they are looking at something else.  Nothing that worried the transplant team.

But with a new test, scan, or procedure every other week or so, we forgot about home dialysis for a while, but while waiting for her at one of the last tests, I contracted COVID, then she got it from me.  Then her brother died.  An emotional and physical roller coaster for the summer months.

But then in October, more than four months after we were supposed to get the orders to get the tests done, the kidney dialysis center threw a letter in my wife’s face saying that she did not deserve to be on the transplant list when she was four months behind on getting the tests done.  My wife’s blood pressure hit the roof.  She showed me the letter.  We had already done the tests months before, why another notice?  In reading the letter, the computer failed to give us the notification, but the computer sent the notification to the dialysis center and they sat on the information for four months, making my wife look bad in front of the transplant team.  Back to my wife wanting to do home dialysis due to lack of care and concern…

But them trying to smear my wife in front of the transplant team backfired on their evil plan (or so it seems to be evil).  The dialysis center raised a smokescreen saying that our cardiologist also failed.  Get the picture?  It is everyone else’s fault, but the dialysis center is pure and perfect.  This backfired on them.  The cardiologist screamed back at the dialysis center and the transplant team that my wife was perfectly fine on all tests and must be placed back on the active transplant list.  When emotions died down a bit, the cardiologist completed the forms that the transplant team required.  Two weeks ago, at the time this was written, my wife was placed back on the active list for a kidney transplant.

Two weeks to the day after getting back on the transplant list, she got a call.  “We just got two kidneys and they are a perfect match for you, but you are third in line.  You are hereby on standby in case someone ahead of you is physically unable to go into surgery today.”

Someone called 24 hours later to say that the two kidneys were used for the other patients, but if there is a kidney that is a perfect match again, both blood type and antigens, my wife is at the top of that particular list.  She is now thinking days before someone else dies, but I had to calm her down.  No, if the next kidney is O-positive or anything negative, she will not get that kidney.  Sure, O-positive is the universal donor, but in the general list of all blood types, she could have hundreds in front of her.

So as the old song goes, “Here we sit like birds in the wilderness, birds in the wilderness…”  We are “being positive” that a kidney will become available with B-positive blood type, and then it is the roll of the dice on the antigens.

But then in saying that, can you really ask God for a special gift?  “Dear Lord, people die all the time, but we need someone with good kidneys who is an organ donor with B-positive blood and the right antigens.  In Thy name I pray, Amen.”  Can you do that?  Sure, I just typed the words, and I will review / edit this paragraph a few times, but really??!!

When I raised that point with my wife she admitted this was a bit icky.  But wait, there are a lot of crazy people on the roads during the holidays…

So now our emotional roller coaster begins.  There is still the chance someone will come forward to be a living donor, but for the other kind of donor, we are in hope that the right kidney comes along while we have heavy hearts that someone had to die for my wife to live.

But wait, Jesus did that already, 2,000 years ago, give or take a few.

Will we get a call next month that says, “Come to the hospital.  We have a match.”  Or will they say that the kidney is workable, but on the broader list, we are fourth since it is not an exact match but something that will work. So we are back in the “don’t go grocery shopping today because we could get ‘the call’ any minute” mode.

One of my wife’s friends at the dialysis center spent a day recently at the hospital, getting ready for the pending surgery and then a delayed antigen test came back. “We are sorry you spent half your day here, but the kidney is not a match. My wife and I are not the only ones on an emotional roller coaster. There are a lot of people that need prayers, and maybe the ones that need the most prayer are those who are not on the transplant list at all. They are just waiting for the dialysis to not work anymore. And then …

So, there could be an exact match tomorrow or never again until my wife is at the top of all lists – unless they remove her due to old age or some underlying medical issue that crops up in the meantime.

But back to the timing.  She was off the active transplant list for two months due to not having certain tests.  That was extended for three months more due to bureaucratic paper shifting and not following instructions in sending the transplant team the results (the hospital doing the test screwed up there, not the cardiologist who jumped on it when they found out).  Note: I had even emailed and called the transplant team to ask if they had the test results, without ever getting a reply.

But then two weeks later, to the day, my wife gets a call from the transplant coordinator that she is first alternate.

If the bureaucratic craziness and stupidity lasted two more weeks, would they have skipped us?

In this roller coaster of wanting no one to die, but someone has to for her to get a kidney, and then the false hopes when we are in a first or second alternate situation, we cannot lose sight of the fact that God, not me writing and calling, but GOD saw to it that she was on the list at the right time.

God is good.  All the time.  And He is that Just-In-Time, so you know He did it, supreme, Creator of the universe, God.

Soli Deo Gloria.  Only to God be the Glory.

8 Comments

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  1. What a ride you both have been. Being a caregiver this past year I realize how difficult the waiting is. May God answer your prayers and make it possible to get a new kidney. You are united by your faith and a loving God who had already planned your future. Prayers from us too🥰

    Liked by 2 people

  2. Wow. You and your wife are in my prayers, Mark. God’s Blessings and hang in there!

    Liked by 2 people

  3. Dear Mark, my heart ached for you and your wife as I read this. What a hard, crazy year you have had. I read through this post twice, trying to think of something encouraging to say, but nothing came to my mind . . . until I began to pray.

    And then I remembered the miracles I have seen, in answer to prayers. My grandson was born without an aortic heart valve. Numerous tests proved this. But by the time he was two, his heart had grown a perfect aortic valve. His cardiologists said they had never heard of that happening. And there have been so many more ‘impossible’ answers to prayers.

    I am praying for a miracle for your wife. There is nothing our God can’t do.

    Liked by 1 person

    • Amen. We are looking for that miracle, and we welcome prayers. Odd that you mentioned the aortic valve. Hers leaked for most of her life until she had surgery to replace it four years ago. Our God is an awesome God. Miracles happen every day. Thank you.

      Liked by 1 person

  4. That would drive me crazy … with the exception that as Christians we know that God knows exactly what is happening, and that He is in every step of this, as difficult as it is for us to comprehend it all!

    Liked by 1 person

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