The call

 For nothing will be impossible with God

Luke 1:37

Last Friday I recieved a call from Erin, the lung transplant nurse at Vanderbilt.   I could call it "the" call, but it was not "THE" call.  It is probably the first of many calls.  Erin told me that the transplant team had met and agreed that it was time to add my name to the waiting list.  She had submitted documentation to my insurance, and after that is recieved she will initiate the process for national listing.

Wow.  The call.  It's really happening.  How long will it be before I get "THE" call, telling me there is are donor lungs that are a match for me?

Let me back up just a bit.  I've been as busy as everyone else, wrapping up a full semester, enjoying graduation acitivities, preparing for our mission trip, and getting ready for Christmas.

My daughter and grand daughters took Henry to see Santa while I was at graduation.

We will eat healthy AFTER Christmas!

I'm baaaaackkk!  On Thursday I had my regular appointment at Vanderbilt. 

First I went to the lab for bloodwork.  Someone needs to find a way to obtain blood samples that does not involve anything sharp.  That person would be a bazzilionaire.

This is Vanessa, who always gets my blood on the first attempt.  She is awesome!  Unfortunately, on this day it took three attempts.  Ugh.  They check for controlled substances and nicotine at each visit, along with the other tests.  If any of those substances are found, the person is dismissed from the program.

I had a chest xray next.  With the exception of having to hold my breath, this test is easy- peasy.

Once again I had to do breathing tests (just an abbreviated version this time), and a six minute walk.  The breathing tests were no worse but I was not able to walk quite as far as the last time.

Finally I saw Dr. Robbins.  Dr Robbins is the transplant pulmonologist I have always seen, until my last two visits with Dr. Shaver.  It was good to see him again.  He sat back in his chair and asked me how I was doing (fine, as always).  He looked at me and asked if I was ready to be listed.  We talked about this for a bit.  I have thought about it and prayed about it for a long time, and have decided that I am "all in."  If you are going to consider a transplant, you have to be 100% committed.  

Dr. Robbins talked to me about my HLA antibodies, which are at 99%.  That means that 99% of all the lungs from donors with my blood type and body size would not be a match for me.  He said that I would probably be on the list for a long time, and may never get lungs.  I realize this, and told him that if God wanted me to have lungs, I would get them; God is not limited by statistics (or anything else).  Dr. Robbins nodded in affirmation.  The scripture I posted from Luke is so inspirational- the example of Elizabeth's pregnancy illustrates God's power over what we deem impossible.

I believe that this is what God wants me to do at this time.  Things have fallen into place quickly and smoothly, and not by my effort. Transplant was not on my mind when my numbers began to decline.  I haven't a clue what is going to happen over the next days, months, or years-  but it does not matter.  That is all in God's hands. I am sure of this- whatever happens will be for the glory of God.

This is Dr. Robbins.  He is very tall!  Or maybe I am very short.

My appointments were late that day, and it was raining.  I know that Michael and I are getting old, because even though there are many wonderful restaurants in Nashville, we just wanted to get on the road to avoid the rush hour traffic!  We chose a gourmet restaurant on I 40.

That brings us to the phone call from Erin on Friday.  She thought she might hear back from my insurance on Friday, but said that surely it would be Wednesday if not. So on Wednesday I will begin my life within a four hour radius of Nashville.  I should go to the airport now and get on a plane bound for Italy- or at least Disney World!

One of the things Dr. Robbins asked me was if I had given up any activities due to my increasing shortness of breath. I have not been able to push a vacuum cleaner for some time (aww.....) and there are many other things on that list, but I have preferred to concentrate on the things I can do.  However, in chuch this morning I thought about how wonderful it would be to sing again.  Because my disease is obstructive ( I cannot get breath out), my breath support is not so good.  Music has always been a passion for me- band, orchestra, choir, etc.  Fun fact about me- I played a few instruments in high school, and my main one was the bassoon.  Yes, really.  Someday I would like to learn to play the harp.

When a person is sick, or experiencing a tragedy, we often ask them to "let me know if I can do anything."  Well, there is something you can do for me.  Become an organ donor, and spread the word. Here are some statistics for you:

As of this moment, there are over 114,000 people in the United States waiting for organ transplants.  Only 33,431 transplants have been done so far in 2018.  Think about that discrepancy.  An average of 20 people a day die waiting for transplant.  

Only 2 out of 10 sets of donor lungs are suitable for transplant.  Lungs and hearts are only viable for 4-6 hours after they are procured.  Lungs are exposed to the environment with each breath.  

95% of adults in the US support organ donation, but only 54% are signed up as donors.  WHAT??????

You can learn more about organ donation, and register to be a donor at this website:  United Network for Organ Sharing  Just click the link.

On another note, Chelsea is home with our grand dog, Willie.  He is still growling at Henry quite a bit, but there has been no blood shed. Here is the two of them waiting for treats.  This is progress!

Here is one of my favorite Christmas songs, sung by one of my favorite artists.

Merry Christmas from our family to yours.  

Waiting.......

   

I am sure that God keeps no one waiting unless He sees that it is good for him to wait.

~ C.S. Lewis

Advent- a season of "expectant waiting."  Like many of you, I love this time of year.  I spent most of my childhood overseas, without extended family, and we stretched Christmas out to fill the void.  One of my favorite memories is of my father reading the Christmas story from Luke on Christmas Eve, and my sister and I taking turns each year reading "The Night before Christmas."  One year when it was her turn, I memorized the entire thing so that I could recite it as she read it.  Yes, I really did. With my dad and sister gone, I find comfort in keeping those traditions.

This is a nativity that I brought back from the Dominican Republic.  I have given many people these over the years, but never thought about purchasing one for me until last year.  It is in my office and makes me think of the mission trip I love so much.

Here are some of the other things our family does to prepare for the celebration of Christ's birth.

This is the tree in our living room.  We do not use a "themed tree."  There are sweet memories in each ornament, and stories too!

I love the movie "Christmas Vacation." My sister and I often called one another and watched it together, saying the lines with the characters.  She sent me this squirrel for my tree.

I collect the annual Lenox snowflake ornaments.

This is the tree in our home office.  It has an angel theme.

This angel belonged to my grandmother.  The head is made of porcelain.

I made many of these angels in 1989.  The are very fragile now, and I always say "this is the last year for the angels" but I end up packing them away for the next year.

I started collecting these Margaret Furlong angels in the early 1990s.  They are delicate and oh so pretty!

My grandmother always had festive dishes on her table, and I have followed in her footsteps.  We usually eat one meal on these dishes - lunch on Christmas day.  Last year I gave in to paper plates!

Chelsea worked at Pier One for a while.  We may or may not have used her discount.

We found this Willow Tree nativity in a store that was closing.  It was missing a sheep, so Michael got them to mark it down even more!  I know that you noticed we are a sheep short.

New decoration for this year.

Over the years we have collected some snowmen.  The ones going up the stairs are sold in Hallmark stores each year.  This is the last year they will be selling them (or so we were told).

I just love it when someone presses all the buttons and they sing all at the same time  (NOT)!

Another piece from Pier One.  Thanks for working there, Chels!

So in addition to the waiting associated with Advent, I have been waiting on information.  In my last blog, I wrote about the fun and fast breathing tests known as MIP and MEP.  I did not hear from the transplant nurse about the results, so after a week I called her.  The tests were normal, but the team was waiting for the imaging center here to send some scans of my pelvis that were done a few years ago.  I called the imaging center, and they had not recieved the request, so I called Vanderbilt again.  Early this week I had not heard anything from anyone, so I called the imaging center.  They told me that the films were Fed-exed to Vandy on December 5th.  The transplant nurse called on Thursday and told me they were waiting for a scan of my brain.  What?  Pelvis?  Brain?  Easy mistake. So, I am still waiting to see if they need more tests, or if they are ready to put my name on the waiting list.  

I guess I had better get accustomed to waiting.  That said, let me share a God story with you.  The first time Erin the transplant nurse called to tell me the team wanted to list me (before the MIP and MEP results), our conversation went something like this:

Me:  If/when you call to tell me it is time for listing, can I ask to wait until February 1st?  There is this mission trip I go on each year in January.

Erin:  It doesn't work that way.

Me:  Okay, well how about after Christmas?

Erin:  They do not want to waste any time. With your antibody levels, we cannot afford to miss that match.

Me:  Okay, well how about December 17, after graduation.  I need to have a tiny bit of control.  Give me something here.  I want to be there to call the names of the students and see their big smiles!

Erin:  I can understand that, but you won't have that option.

So.......guess what happened Saturday?  GRADUATION!   Looks like I had a little control after all.

Just a few of the 88 undergraduate nurses from Saturday.

Wonderful staff helping to line the students up.  Shannon Blanken, Khadijia Payne, and Paula Karnes.

Undergraduate faculty Renee Anderson, Christy Davis, Megan Pittman, Sandy Brown, and Jennifer Delk.

Sheilla Foster and Shayla Alexander.

Hendersonville faculty Dr. Elisha Hill, Dr. Allison Davis, Ashley Gipson, and Carmen Davis.

Germantown faculty members Jean Crawford, Dr. Anita Langston, and Dr. Linda Billings.

Ms. Joy Watkins, our newest staff member!

Graduate faculty Dr. Cathy Ammerman, Cathy Aslin, Dr. Patsy Crihfield, Dr. Cullen Williams, Dr. Joyce Snyder, Dr. Shari Wherry, Dr. Charley Elliott, Dr. Cindy Powers, and me!

39 graduate students crossed the stage Saturday!

It was a wonderful graduation.  I truly have the best job in the world.  As you can see, I work with people who are not just colleagues, but friends.  I actually had the honor of teaching some of them in their graduate programs. 

Our students are amazing- and on that note, I want to share a really special moment.  The nurse practitioner graduating class had a celebration dinner Friday night.  It was my privilege to serve in the Dominican Republic last year with most of them.  

The students gave a generous donation to the Vanderbilt Lung Transplant Program in my honor!  I was speechless.  First of all, this night was about them, not me. I neither anticipated nor expected this kindness.  Furthermore, these folks have no money- they just spent it on tuition, books, and otoscopes! Everyone saw my ugly cry that night.

I am so proud to have played a small part in their education, and delighted to not only call them colleagues, but also friends.

Did I tell you I love my job?  Who am I that God would allow me this opportunity?

What a weekend- after church this morning, lunch with good friends, and the Englewood Christmas program this afternoon, we felt like this:

Waiting....and counting every blessing.

The Backstory

If I told you my story, you would hear hope that wouldn't let go

And if I told you my story you would hear love that never gave up

And if I told you my story you would hear life, but it wasn't mine

~from My Story by Big Daddy Weave

I started out my day in a familiar place.  My appointment was at 9:45.  I got there at 9:00 and the respiratory therapist called my back about 9:05.  He asked me how long I had to drive to get there, because "this test literally takes five minutes."  He was right.  I was in my car at 9:18.

The tests were simple- I exhaled against pressure and inhaled against pressure. The results of this test will reveal the strength of my respiratory muscles.

When I started writing the blog, I said that I would tell you about my disease.  So for those of you who want the details, here is a simplified explanation- the "backstory," as my grand daughter would say.  Sorry for the diagrams, but I did not want to plagiarize or use copywrighted material- setting a good example for my students, right?

The disease I have is called constrictive bronchiolitis, bronchiolitis obliterans, or obstructive bronchiolitis.  It is an obstructive disease- I can get air in, but not out.  There is a similarly named disease- BOOP (or COP) which is NOT the same at all.  It is a different disease.

When you inhale, air goes down your trachea, or windpipe, into the bronchus, and then to the bronchi of each lung.  These passages have rings of cartilage which keep them open.  From there, air travels through tiny passages known as bronchioles, to the alveoli, where oxygen and carbon dioxide are exchanged.

Each lung has about 30,000 bronchioles, and 300 million alveoli.  Bronchioles are 1 mm in size -a little smaller than the thickness of a dime.  Alveoli are 0.5 mm to 1 mm in diameter.  These structures are tiny, but we have A LOT of them!  The bronchioles do not have rings of cartilage, but are instead lined with smooth muscle and connective tissue.  Therefore, they can contract and expand.  The contraction of bronchioles causes wheezing- bronchodilators such as albuterol are designed to open the bronchioles during times when they are constricted (smoke exposure, asthma attack, etc.).  

I have lupus and Sjogren's, which are autoimmune diseases.  The human body is constantly trying to keep out foreign invaders, such as viruses, cancer cells, and bacteria.  My immune system is confused, and recognizes my own DNA as foreign.  In an effort to attack the DNA, my immune system caused inflammation in the bronchioles.  Autoimmune diseases are also connective tissue diseases and can attack anywhere there is connective tissue- such as the joints, which is common in Rheumatoid arthritis.

In BO, inflammation occurs around the bronchioles, constricting them and making them narrow.  Over time, the inflammation turns to fibrotic scar tissue and this change is irreversible - it is permanent.  

I can get air in, but it is difficult to get air out.  Therefore "old air" is trapped in my lungs, which decreases the space available for new air.  Eventually the exchange of oxygen and carbon dioxide is affected, and the carbon dioxide starts to build up.

I also have NSIP (non specific interstitial pneumonia) but I won't go into that here.

Enough of the boring stuff.  Let me tell you the real story.  In December of 2003, I noticed I was having trouble breathing.  I blamed it on being out of shape, but it progressed.  I had an appointment with my rheumatologist for a checkup on my lupus, and when she listened to my lungs she was concerned.  She told me this was not due to being "out of shape" and that I could have lymphoma.  She ordered breathing tests, a CT, and referred me to a pulmonologist.  The breathing tests showed a severe obstructive deficit.  I had a bronchoscopy, but there was no diagnosis.  For the next nine months I declined and even lost 30 pounds.  I was told I had "idiopathic COPD."  In September I developed a pneumomediastinum (air leak in the center of the chest).  I was hospitalized for a few days, and came to the conclusion that I would die if I did not do something.  

Before I became sick, I had begun a doctoral program.  I had no idea why- I am one of those people who actually likes school and likes a challenge.  The program I was in was very competitive, and there were only about 15 of us in the cohort.  I had access to the medical library at UT and began to research the abnormalities on my CT-"mosaic attenuation" and "ground glass opacities."  All of the radiology articles pointed to autoimmune disease as a common cause of these findings.  The specialists did not believe my lupus was causing this, because the pleura of the lungs was not affected.  I referred myself to the Mayo clinic.

The doctors immediately said "we think you have bronchiolitis obliterans."  They ran some tests and scheduled a lung biopsy.  I had no idea what this disease was, but was relieved that there was an answer.  I did some research and my relief turned to anxiety.  I saw the terms "rare disease" and "often fatal."  It is so aggressive that it is on the compassionate allowance list for disability. There was not much in the literature at that time, and I believe I read every article that was published.

The doctors told me I would probably live 3 years, and guessed at some treatment to suppress my immune system and halt the progression of the disease.  Every time I took that medicine I prayed over it.

On a cold day in January of 2004, I was sitting in a hospital bed at General struggling to breathe more than I ever had before.   It was about two months after my diagnosis; my right lung had collapsed and I had a chest tube.  For the first day or two things were better.  That particular night, my breathing had gotten worse, my saturation was low even on oxygen, but the respiratory therapists and nurses did not seem too worried.  I am not an alarmist, so I was pretty calm, I thought that this must just be expected……..that the three years would turn into fewer and I would die sooner rather than later.  I have never asked "why me?", but that night I asked "why now?".  I was halfway through a highly competitive doctoral program and had about half the data for my dissertation collected.  I was working two twelves, two eights, every third Saturday, and going to Memphis each Wednesday to work with a pediatric endocrinologist for my fellowship.   I asked God why he would put me in that program and waste a spot that would go to someone else if I were not going to be around to use it? It would be much later before God revealed the answer.  As it turned out, an x-ray the next morning showed that my lung had re-collapsed and I now had a tension pneumothorax. I was whisked immediately to the interventional radiologist who inserted a larger chest tube, which took care of the problem.   I kept the chest tube for 21 days, even returning to work with it.

Well, obviously I did not die and now I know the answer to the question I asked God that night.  There are many reasons I was in that doctoral program.  First of all, I am goal oriented and generally do not start something if I will not finish it.  School kept me distracted from how I was feeling.  More importantly, if I did not have that doctorate I would have never tried teaching and found out I loved it so much.   I would have never come to Union, and never gone on the Dominican Republic trip.  I also had access to the UT Medical library and was able to do some research on my own to “help” those who were trying to take care of me. 

Over the years, it seems that my testimony has been how I have coped with the disease.  I have tried to keep a positive attitude and to move forward.  There is only one reason for this- God.  I know that every breath I take is in his hands, and I will breathe exactly as long as he needs me to in order to accomplish his purpose for my life.

Many times people say to me "You don't look sick."  I think they mean it as a compliment.  I certainly do not want to "look sick," whatever that means.  If I could ask you a favor, please do not say that to anyone- it often makes me think that people really mean that I am malingering.  Once a doctor documented these words in my chart "deceptively well appearing."  That sounds a little better.  There are many "invisible diseases."

Here is a picture of me from the UT yearbook in the fall of 2003, before the lung issues that began that December.

Here is a picture of me exactly 12 months later, 9 months into lung disease and 30 pounds lighter.

For 13 years I have been able to do many things- travel, teach, go on mission trips, etc.  I have spent some time in the hospital, and I have had to use oxygen.  I have been blessed to have a rich, fulfilling life with chronic lung disease.  

Less than a year ago the values of my pulmonary function tests began to decline, and there has been a slow downward trend ever since.  

Here is a copy of what the results of pulmonary function tests look like.  This is the report from two weeks ago. Notice all the "As" in the far right column- those do not mean "excellent," as in grades, they stand for "abnormal."

The first value, FVC, stands for Forced Vital Capacity.  That is the amount of air you can exhale after a deep breath.  I should be able to exhale 3.06 liters, but you can see the value is 1.44 liters, or 47%.

The next value, the FEV1, is what many people call "lung function." For me, it corresponds well with how I feel.  This tests measures the amount of air you can blow out forcefully in the first second after a deep breath.  That value should be 2.4 liters for me, but it was 0.58 liters, or 24%.  This is down from 33% a year ago. 

Further down the page is RV, or residual volume.  This is how much air is left in your lungs after exhaling as much as you can.  Mine is 203%.  You can appreciate that there is little room for fresh, oxygenated air in my lungs.  

At the bottom of the page is a DLCO, which tells how well the alveoli are exchanging oxygen for carbon dioxide.  My diffusion capacity is  46%.

When my sister graduated from high school in 1976, one of the graduates sang the Carole King song “Tapestry.”  I remember being fascinated by the concept of life as a tapestry.  I believe that just now is God really giving me an understanding of that concept.  I can look back and see the tapestry that He is weaving together that is my life.  The mission trip that I love so much is represented by threads of “rich and royal hue.”  But even the most beautiful threads in my tapestry would not shine nearly as bright without the dark ones running right alongside them.  I would not change a thing if I could; for it would change the design of the tapestry.  Hallelujah! The really amazing thing is that the tapestry is not yet complete! 

And that is my story- so far!

Best of times, worst of times

Be happy with those who are happy, and weep with those who weep.

Romans 12:15

This week has been full of happiness and sadness.  You might say it was the best of times and the worst of times.

My mom's 80th birthday was Monday.  On Sunday night, we surprised her with cupcakes at her church's Thanksgiving dinner.  She was shocked!  It was great to be back in the church where my parents were married, and my Michael and I were married.  Both of our daughters were dedicated in this church. We saw old friends and shared precious memories.  What a fun night.

It was wonderful to be back at work this week.  Being on campus, the familiarity of walking down the hall, spending the day with colleagues- these things warm my heart.  

My happy mood was changed by some sad news.  One of my colleagues, Dr. Dan Musselman, passed away after a year and a half battle with cancer.  Dan was a beloved member of the faculty at Union.  He served as chair of the music department, and was only 38.  Please pray for Dan's wife and their 3 young daughters.  You can read about Dan and his courageous battle  here .

Across our world, many tragic events occurred this week.  Shootings, wild fires, and food poisoning are just a few.  We mourn with our brothers and sisters who are victims of these horrific events, but we have hope that is only found in Christ.  We can be happy when our friends are experiencing wonderful moments such as the birth of twin grand babies, and weep with our friends who are mourning the loss of loved ones. 

The news from Vanderbilt was not exactly what I thought it would be.  The opinion of the committee is that I should be added to the list if some further testing is normal.  On Monday I will return to Vanderbilt for two tests -MIP and  MEP- doesn't that sound fun?  MIP and MEP.  That is exactly the way the nurse said it.  I had never heard of these tests, and thankfully they are just quick breathing tests to measure the strength of my respiratory muscles.  

Our new dog Henry has been acclimating to his new home well. Our daughter Chelsea and our grand dog Willie came home today.  We had hoped the dogs would be best friends, but that has not happened.  They both have such sweet temperaments- with people.  

There were some moments when they tolerated each other, but there were a few episodes of growling, baring of teeth, and snapping.  There was even a tiny amount of blood shed.  Willie wants to be the alpha dog, and Henry is glad to let him.  

We followed all of the recommendations and introduced them in a neutral territory, on leashes.  We then let them roam in the back yard for a while before bringing them in the house.  This is after their first spat- they are getting treats and behaved very well. 

After their second spat, the girls held them.

We are not exactly certain what the triggers are.  For now we are mostly keeping them separated.  I feel so guilty.  Willie seems angry with me.

Earlier today, Michael and I were in Memphis and happened by this store.

We were curious so we went in.

The food is safe for human consumption, and all of the ingredients are natural and safe for dogs.  Oh, yes we did.  We bought two turkey leg shaped peanut butter flavored cookies for Willie B and Henry!

I am so thankful to spend time with family over Thanksgiving.  We did some shopping tonight with Christy and Chelsea.  Tomorrow we are going to Cooter, Missouri (yes, you read that correctly) to have dinner with Michael's family.  Michael is one of eight children, so it is always a good time when they all get together.  My mom is going with us and I cannot wait.  

Saturday we are taking my mom to Reelfoot Lake to eat fish and all the "fixins" for her birthday.  My aunt is coming too!

Chelsea gave me an early Christmas present. I have precious memories of quoting lines from this movie with my sister.

Listen to this beautiful anthem composed by Dr. Dan Musselman in celebration of the life of Union student Olivia Greenlee.