Rejection: The Sequel

"Let us hold unswervingly to the hope we profess, for he who promised is faithful."

Hebrews 10:23

 "Sequels are often not as good as originals." 

"Same song, second verse, a little bit louder and a little bit worse."

These statements ring true of the last few days.

An unplanned visit to Vanderbilt.

An unplanned bronchoscopy.

The silver lining to this cloud is that a problem was found early!

I had been tired for a few days, but just blamed it on poor sleep and a busy schedule.  I also had been subconsciously avoiding the stairs due to some mild shortness of breath, but I wasn't really concerned.

Tuesday night I was doing all the tests I still have to go through twice a day, and my oxygen saturation was in the high 80s.  (It has been 99-100 consistently since my transplant.)  I did not believe it, so I found another pulse oximeter - we lung patients tend to have a few lying around.  The second one also showed levels in the high 80s.  So like any good nurse, I cleaned them both and changed the batteries.  The numbers were the same.  What?

I went on to test my breathing with the spirometer.  After multiple attempts, I could only get to 1.79, and my usual result is around 2.2.  

I still was not very concerned, so I waited an hour and tried it all again.  The numbers were the same.  What to do?  My Vanderbilt notebook instructs me to call in this circumstance.  So I thought I would just call Elizabeth, my nurse coordinator, the next morning.  After all, I really felt fine and I had lots of important plans!

Michael was not happy with my decision and convinced me to call.  Dr. Loyd call told me to come to the ER at Vanderbilt, that "something is going on."  Then he asked if I had any oxygen here -of course not- why would I? He said I should go by the local ER first because my numbers indicated that I would need to use oxygen.  I convinced him to let me just go straight to Vanderbilt.  (I know that it surprised you that a I bargained with the doctor- pretty sure I have never done that before.)

Dr. Loyd told me I would need a bronchoscopy because the problem was likely infection or rejection.  The schedule was full so he did not think they would be able to do it for a day or two. God had other plans, and Dr. Robbins was able to work me in right away.  My favorite CRNA, Shawnee, was working that day and worked me in her schedule as well. 

While I was in the hospital, there were many bright spots.

I got to see my awesome nurse coordinator, Elizabeth.  She is the best, and always makes me feel better.  She recently earned her BSN while working full time with some extra shifts as well, raising two small children, and being a wife. I am so proud of her.

There were three of my transplant friends in the hospital and we had the opportunity to visit.

Stacey Cox is will remain in the hospital until she gets her lungs.  Stacey and I were introduced through a mutual friend, and had talked and texted, but never met.  Isn't she beautiful? Stacey loves the Lord and is a spiritual mentor to me.  Her miracle is coming soon!

Terry Nixon had his double lung transplant on September 9th, and he is such a fighter!  He will be back on the golf course before you know it.  Terry is a faithful servant of God and credits the Lord for his healing.

SunShine Perez is known by many.  She spent 6 months in the hospital, 3 of those months on ECMO while she waited for lungs.  I visited her once while we were both there, but she was very sick-look at her now!  SunShine's faith is getting her through one day at a time.

Thursday morning Dr. Loyd told me there was mild acute cellular rejection found on the bronchoscopy again.  Hello, massive doses of IV steroids.  Yay for loose clothing, moon face, and all the other fun side effects.

This is not what I wanted to hear, but it did explain my symptoms.  The odd thing is that when this happened 2 months ago I did not have any symptoms.  My next bronchoscopy is not scheduled until October 16, so the level of rejection might have increased and been more difficult to treat had it not been found until then.  God's protection!

There were also several other medication changes while I was there due to kidney issues.  I got to stop the "skunk medicine" (cyclosporine) and go back to tacrolimus.  The other new drug, Dapsone, was causing my anemia to be much worse, so it was stopped and inhaled Pentamidine was ordered every 28 days.

In the past, pentamidine had to be given in a tent, but now there is a fancy tubing gizmo with a filter in it! 

I am so thankful for the lung transplant team at Vanderbilt.  They are on top of it and care about their patients. 

Am I worried?  Honestly I have peace. This is just a small bump in the road and no surprise to God.  He is faithful and will see me through.

The steroids may be keeping me awake tonight, but someone is at my feet snoring.

  

July and August: Walking by Faith

"Would I believe you when you would say

Your hand will guide my every way?

Will I recieve the words you say

Every moment of every day?

Well I will walk by faith

even when I cannot see

Well because this broken road

prepares your will for me"

~Walk by Faith by Jeremy Camp

 

My last blog post ended with my first day of treatment for minimal rejection.

Day 2 of treatment.  Take a look at my face.  There was beginning to be a slight decrease in the chipmunk appearance.  Hold on, because after these three days of massive IV infusions of steroids, I will return as the sister of Alvin, Simon, and Theodore.

Day 3, and the IV held all three days!

One good thing about having to be in Nashville on steroids is that you don't have to look far to find good food. After my treatment one day, we went to a place called the Butcher and Bee.  If you go there, try the whipped feta with honey and green onions.  They give you homemade pita with it.  I don't even like feta cheese but this was DELISH!  

They bring your bill in a book- customers write in the books.  So cool!

The weekend after my rejection treatment, we had a girl's afternoon watching "Mama Mia" by the Jackson Theater Guild.  Many of the actors/actresses were my colleagues at Union!  They did a great job.  We followed the show with a trip to Baskin Robbins. 

The next weekend was graduation.  I was so thankful once again to attend the festivities and to celebrate with our grads. All of the graduates in this picture are receiving doctoral degrees.  Go nursing!

Graduation was on Saturday, and orientation for all incoming graduate nursing students was Monday.  Orientation week is very chaotic, but I love it.  I teach an Epidemiology course in the fall with doctoral students.  We begin the class with a field trip to Elmwood cemetery in Memphis.  The students read "The American Plague: The Untold Story of Yellow Fever, the Epidemic that Shaped our History," by Molly Caldwell Crosby. Ms. Crosby comes to Elmwood to talk to students and answer their questions, then sign their books.  Afterwards, students see the graves of many of the martyrs and victims of Yellow Fever.  

During all these wonderful events, I was having labs done quite frequently.  For some reason, my potassium was rising.  When your potassium is high, you get to take some yummy medicine called Kaexylate.  If you have a medical person in your family, just ask them about the fun side effects- I won't mention them here.  The bottle in the front is full of powder.  I had to pour the powder in the bottle behind, and add water to the top.  So it is pretty much like drinking sand.  I ended up having to do this five different times.

I was also having some serious migraines.  When you are post transplant, you cannot take ibuprofen, aleve, motrin, etc.  My only choice was Tylenol, and that was not working.  The transplant doctors ordered some sumatriptan (Imitrex) to see  if that would help.  The next time I had a headache, I eagerly took the sumatriptan, in hopes that it would do the trick.  It did a trick, for sure.  I ended up at the ER a few hours later with a terrible reaction.

To be honest, the labs draws, med changes, and headaches were not fun.  The transplant team planned on discussing all this with me when I went back for my follow up bronchoscopy.

During the second week of August we had an overnight retreat with our leadership team in the College of Nursing.  We worked, played, ate, laughed, and cried.  I am so privileged to be  a part of this team.

After the retreat, I was still having issues with my kidneys, potassium, headaches, etc.  I was admitted to the hospital (just for two nights).  The nurse who took care of me in the ER is a Union grad!  Her name is Natalie Wilson.  She is a great nurse.

They changed several of my medications, and I recieved some IV meds - and another dose of kaexylate (yay!)  The nephrologist came to see me in the hospital. 

The main anti-rejection drug, tacrolimus, was changed to cyclosporine.  Tacrolimus made me shake and lose a large amount of my hair.  A common side effect of cyclosporine is excessvie male pattern hair growth.  So.....bald head, hairy face.  Such glamour!

Here is my first bag of cyclosporin.

Why is the bag so large?  Because cyclosporine has to stay in individual foil packets- that cannot be opened without breaking a sweat, I might add.  Here is a picture of the packets- the large one is a 100 mg dose, the smaller ones are 25 mg.  I have to take 125 every 12 hours so that is a large one and three small ones.  When you do get the packet open, stand back!  You will immediately notice the unmistakeable scent of skunk.  I am not kidding.

I have been a nurse since 1985.  I have seen many, many pills.  I have NEVER seen one that is as large as cyclosporine 100mg.  NEVER.  The coin below is a quarter.  Not a dime.  Not a nickel.  A quarter.  

Walk by faith, not by sight (or smell).

Just two days after my discharge, I went back for my labs, pulmonary function tests, X-ray, and visit with Dr. Norfolk.  My FEV1 was 94%- you might remember that last time it was 105%.  Dr. Norfolk told me it was normal, but I really wanted that 105% again.  Yes, I am THAT person.  

I had my bronchoscopy that afternoon.  This is my friend Shawnee, one of the best CRNAs I have ever met.  She has been there for three of my bronchoscopies, including the first one.  As you can see, the prednisone has made my face swell up like Violet Beauregarde in 'Willy Wonka and the Chocolate Factory," but let me explain why I also look like the Michelin man. The paper gown I have on is hooked to a wonderful gadget that blows warm air into it- it's called a Bair Hugger.  They even give me the controls to it now so I can be as warm as I want.

My transplant coordinator Elizabeth called me two days later with the best news - the rejection was gone!  Woo hoo!  They told me it would happen, and they told me they would take care of it.  It did, and they did.  I will have to have another bronchoscopy in 6 weeks and then I can go back to the original schedule.  

During this time, my grand dog Willie B had a mole removed from his eyelid.  It was melanoma.  My daughter is praying and thinking about options.  Here is Willie B with his "cone of shame."  We love our Willie B!

Henry is very worried about Willie- from a distance.

 So through all of the fun times, and the not-so-fun times, we walk by faith.  Pray that the family of my donor is strengnthed by their faith, and by the knowledge that their gift is making a difference.

Rejection: HE makes me Brave

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness."  Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest in me.

2 Corinthians  12:9

Yep, back at Vandy for an unplanned treatment.  I heard the dreaded "R" word this week- rejection.  Let me back up.

July started out with a bang (pun intended).  We celebrated Independence Day with family at my brother in law and sister in law's home in Caruthersville.  Great food and fun fellowship!

The 8th was our granddaughter Anna Kate's 12th birthday.  Her party was scheduled for the weekend, but her mom surprised her with festive balloons and birthday breakfast doughnuts.

Those balloons had two meanings.  They helped mark the birthday of a special girl, and a milestone for me- I actually blew one of them up!  That is something I have not been able to do for many years.

Later that week I had routine follow up visits at Vanderbilt.  This was actually my 6th month visit- two weeks early.  I saw Dr. Shaver and she was very happy with my progress.  My labs are still good- my kidneys are not thrilled with the entire transplant routine, but we are moving forward.

The documents below are my pulmonary function test results.  You can see the previous ones in the archived blogpost "The Backstory".

You may recall that one of the main numbers they look at is the FEV1- mine was 24% when I was listed.  I have starred and circled this week's number below- it says 105%!  What?  Seriously?  How is that possible?  Just call me an overachiever.  See all the "Ns" in the right hand column?  That means each value is normal.  Prior to transplant, I had never seen that.  Each test had an "A" for abnormal beside the value. Seriously, there is NOTHING God cannot do.

Look at the graphs below. The first plot on the left is 1-1-14.  The last plot on the right is today.  Look at how the line was low, and getting lower, and then started rising sharply.  The day that the numbers starting climbing is the week after my surgery, when I had my first post-transplant tests.  

Dr. Shaver told me many good things.  She said I could go back to work full time if the bronchoscopy was normal.  She said I could decrease my prednisone to 5 mg a day if the bronchoscopy was normal.  She said I could stop the anti-viral medication if the bronchoscopy was normal.  Wonderful news!  She also said I could travel to Washington DC in October for a national meeting I need to attend- I was not able to go last year because I was too sick.  I have to purchase a special mask for the plane.  She smiled and said "If you fly Southwest wearing that mask - no one is going to sit next to you."  We all laughed.  Just a little transplant humor.

Later that day, Dr. Robbins did my bronchoscopy.  It went well.  

Elizabeth, the wonderful transplant nurse who takes care of me, called the next day.  The bronch showed no CMV and no donor specific antibodies.  Those are very good things.  The pathology was not back yet, so she would have to call the next day.  I had no reason to think there would be any rejection, because my lung function was WONDERFUL.  I was feeling great!

When Elizabeth called me on Friday, I heard the "R" word.  The term "rejection" is not what you want to hear as a transplant patient.  There are several different types of rejection.  The kind I have is acute rejection, and the Grade is A1, which is very mild.  It usually responds to high dose steroids and is not uncommon.  The transplant team even told me to expect it at some point.  My good friend Ashleigh-Anne, who had a liver transplant, had three episodes of it.  The treatment consists of daily infusions of high dose (500 mg) steroids for 3 days, then a taper starting at 60 mg and ending at 20 mg, where I will stay for a while.  I will have a repeat bronchoscopy in 4-6 weeks to ensure the rejection has resolved. Steroids are a double edged sword- they are effective- even life saving, but the side effects are no fun at all.  Bye bye sleep, hello elastic waistbands.

Elizabeth tried to get the infusions set up at the hospital here, but unfortunately they would not do it.  I am driving to Vanderbilt for a 30 minute infusion of a drug that is given in hospitals every day.  

Hello, Vanderbilt!  Hello, transplant floor! 

This is Molly, one of the wonderful nurses who took care of me.

I get to keep the IV in my arm and I am praying it will hold until my last infusion on Monday.  You know how much I love being stuck, and how uncooperative my veins are.

We stopped at my favorite burger joint- Hugh Baby's- for a quick lunch.

Then we drove home so we could attend Anna Kate's party.

Swimming fun!

 Big sister Maggie and her sweet friend Bethany.  Too cool for the little girls, so they are helping with the preparation.

Pizza and swimming- a match made in Heaven!

I'll be your taste tester, Christy!  I'm being so good, and look how cute I am!

     

Lemonade and lots of sweets!  A beautiful and tasty cake with every kind of sprinkle known to man.  Anna Kate's Grammy, Betsy Jones, made it.

 

Henry is taking his place in the line for goodies.

As the day draws to a close, I am thankful that a complete stranger gave me the lungs I needed to experience all of the activities in this jam-packed Saturday.  Six months ago I would have had to choose an activity.  The trip to Vanderbilt would have taken all my energy for the day.  

I honestly am not worried about the outcome; this news was no surprise to God.  He is still in control . He has brought me so far, and performed many miracles in my life.  This rejection is a small thing for him, and he will be glorified regardless of the outcome.  It was found so early- it has not affected my lung function, and I am grateful for that.  Once again, his timing is perfect.  His power will be made perfect in my weakness and I can't wait to see the next page in this story!

This bracelet Ashleigh Anne gave me for my birthday is so appropriate today.
HE makes me brave!

A little more transplant humor to close out this post with a grin!