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.  

A day without Vanderbilt!

Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think.

Ephesians 3:20

What a week.  I must apologize to all of you who have been through this.  I knew it would be tough, but I had no idea!  People tell me I am a strong person, but this experience made me doubt that.  I do not know how people without a strong support system make it through the 5^thday.

Speaking of support systems, I have to thank my husband, who put up with my irritability and anxiety all week, and my daughters, who drove in bad weather to attend required visits.  I could not have done this without the support and prayers of my family, friends, colleagues, and people I don’t even personally know.  My current students and former students have been so inspiring.  As a matter of fact, a previous student reminded me of the scripture above- I shared it with the mission team before we left in 2015.

Michael and I in Barcelona.

One of many pictures of Michael with gelato.

Our girls, Chelsea on the left and Christy on the right.

My mom with our grand daughters, Maggie and Anna Kate.

 Our grand dog, Willie B.

I want to especially thank my dear friend Ashleigh- Anne Hughes (AA). She received the gift a life in the form of a liver transplant.  This happened at Vanderbilt 4 years ago.  AA has been sharing her experiences with me for quite a while now, and was available to respond to my many, many texts from this week.  

This is a picture of AA and me from last summer.  We share a love for gummy bears and all things sweet.

It was AA who suggested the blog. She writes a blog and I really enjoy following her, but I am a very private person and did not want to share all of that.  As I was waiting for the evaluation week, I lurked on support websites and Facebook sites for people who are waiting for a lung transplant, and those who have received one.  The experiences of others helped me so much.  God was telling me to give back, so the day before the evaluation I began writing the blog, with AA’s help.  She urged me to not “sugar coat” anything.  

I have been shocked at how many people are reading the blog.  I have received so much encouragement! I have connected with friends and acquaintances from years ago.  I have received uplifting words from people I do not know- some from foreign countries. The blog is a powerful thing- for me, and for others. 

There was a bright spot at the end of the week.  Yesterday we adopted a rescue dog.  He was in a foster home, and that family kept him until we finished the evaluation week.  We committed to taking him in October, but did not want to leave him for a week so soon after bringing him home.  He is a Cocker Spaniel, like our beloved grand dog Willie (also a rescue).  He has a sweet disposition and loves people. Henry has been great therapy for me today.

Henry loves to ride in the truck.

Anna Kate with Henry.  He likes to hold his blue Kong ball in his mouth.

He is a good therapy dog!

As I wait for the phone call from the transplant committee, my mind is spinning. One of the easiest things to think about is the chance that I will not be a candidate for a transplant.  I am not afraid to die.  This world is not my home.  

The next the next thing I might hear is that I am a candidate for transplant, but they want more tests, or to re-evaluate me in a few months. This is what I think I will hear. My lungs are not working well, but I am not on oxygen at rest.  The possibility of needing more tests right now is unthinkable.  Pushing back a transplant for months (or more!) would make me happy.

The last possibility, that I might be listed now, is the hardest to think about.  First of all, I feel like there are others who are much “sicker” than me, and lungs are scarce.  Eight out of 10 donor lungs are unsuitable for transplant. My friend Karen Mitchell was on a heart lung machine when she was transplanted over a year ago.  She has two young girls who need their mom. In my mind, others need lungs more than I do.  Of course there is also the inevitable guilt that a family would be experiencing unimaginable grief in order for the transplant to happen.  If listed, I can only be four hours from Vanderbilt the entire time, which could very well be a year or more due to the antibodies and my stature.  

No mission trip.  

No family beach trip. We have been planning a beach trip in March- my sister’s family, my mom, and us.  I have not seen my nieces or my brother in law since my father’s funeral last year.  We are not really “beach people,” but have a beautiful house in Grayton Beach rented, and plans for a week of Skip-Bo, Five Second Rule, and all kinds of fun.  I don’t want to miss that time with family. 

(My nieces, from bottom to top- Cameron, Mackenzie, my daughter Chelsea, neice Amanda, and my daugher Christy.  My niece Laurel was not able to be here.) 

No attending my niece’s wedding. My sister, her mother, passed away a little over a year ago, and it is so important to me to be there.

I could be on this leash of for years.  I am not sure I want to do that.  

A transplant impacts many people, not just the one who has the transplant.  If listed, I would have to call the transplant center every Thursday with an update, and any time I got sick. There would be monthly visits for pulmonary function tests, 6-minute walks, blood work, and the dreaded arterial blood gases. 

After surgery, I would be required to live no more than 10 minutes away from Vanderbilt for THREE months!  Someone would have to be with me the entire time.  I would rather do just about anything to avoid imposing on people, so this puts a strain on my husband and daughters.  I would take at least 45 pills a day, plus insulin injections for a while.  There would be daily visits to pulmonary rehab, weekly lab work, and frequent bronchoscopies to check for rejection. 

So, I am supposed to “take it easy” this week, but I rode with my family to Martin to try the food at The Grind restaurant.  The doctors told me not to lose weight, so I ordered five courses.

 Courese #1: Mint chocolate chip

Course # 2- Smores!

Course # 3:  Cookies and Cream

Course # 4:  Banana pudding

Course # 5:  Peanut Butter and Chocolate 

Just following doctor's orders, ya'll

Matthew West's song "Strong Enough" fits Ephesians 3:20 pretty well.

Transplant evaluation day 4: Overwhelmed

"God excels in overcoming the overwhelming."

~ Jan Brazeau

This was the final day of my evaluation.  Last night around midnight, the fire alarm in the hotel blared for what seemed an eternity.  Thankfully, nothing was amiss, but it certainly added to the exhaustion I felt this morning. Originally I was to be here through Friday, but one test was completed when I came to the pulmonary clinic in September. The schedulers offered to move my heart cath from Friday to today so that I could go home.   The test I had in September is called esophageal manometry.  It is done to evaluate the muscle strength in the esophagus.  Swallowing is crucial, because aspirating into new lungs could be disastrous.  I wish I had thought to take pictures, but most of you would not have wanted to look at them. During this procedure, a tube is threaded through your nose into your stomach.  It is larger and stiffer than a feeding tube- as a matter of fact, it feels like a garden hose.  Once it is in place, you are given small sips of water  and asked to swallow as they measure the pressure your esophagus exerts upon the tube. It is a difficult test as it hurts to swallow, you gag often, and the tube is uncomfortable.  However, it is not terrible.  The nurse was very patient and encouraging.  Thankfully, my test was normal.

Since the heart cath was scheduled for today at 2 pm, I could not eat or drink anything.  We got to the hospital early, so Michael and Chelsea got a quick bite in Au Bon Pain.  Yes, they have one in the hospital! (I have been scoping out the restaurants- there is a Ben and Jerry's, a Mellow Mushroom, the Grilled Cheeserie, and Biscuit Love very close).  Michael made up for eating in front of me by purchasing a pastry for me to eat after my procedure.

My first visit of the day was with the transplant surgeon, Dr. Bacchetta.  I had looked him up and he is very accomplished!  He recently came to Vanderbilt to help expand the lung transplant program.  

I had been looking forward to meeting him.  This was another time I had to have a secondary caregiver present, so our daughter Chelsea came.  I was anticipating being told details about the surgical procedure and learning what would happen afterwards.  We had been given some of this information during other visits this week, but all of the information we were given was overwhelming, and repetition would help us process things.  I was so excited about seeing the brilliant surgeon who might be performing the surgery that would give me healthy lungs (there are two other lung transplant surgeons at Vandy).  I was very eager when I heard the knock on the exam room door.  He walked in, shook hands with all three of us, sat down, and said...... get ready for it..........

 "What questions do you have for me?"  WHAT?????  SERIOUSLY??????

I did not know where to begin and could not even articulate coherently.  This is an 8-12 hour surgery. I expected him to talk to us first.  That did not happen.  Chelsea and Michael had questions, but I was pretty much in shock.  I will say that he answered every one of their questions, and was very reassuring, but I was just put off by the way he began the visit.  Chelsea did ask about the HLA antibody situation- he talked about that some, and about using the lung in a box (like Dr. Shaver had talked about) to buy time in order to be certain the donor lungs matched perfectly.  He also said he had transplanted someone with an antibody level (PRA) of 98% and she is doing well 3 years post transplant.

It was also interesting to learn that Vanderbilt did 21 lung transplants in the last 3.5 months.  The highest number they have done before this was 27, in 2015. 

When I left the visit with the surgeon, I felt like I might punch the next person who asked my to verify my birthday, address, etc.  I had just had enough.  I honestly did not want to continue, and if this were not the last day, I might not have.  I was surprised by this feeling.  The overcast, rainy, freezing weather was not helping my disposition either. 

The next thing on my schedule was another pulmonary function test.  The respiratory therapist who did my test this time told me his wife works with Tennessee Donor Services!  

Here is a picture of the PFT "box" again, in case you forgot what it looks like.

The very last thing on my schedule was a heart catheterization, to ensure that my heart is healthy enough to withstand such complex surgery.  Chronic lung disease can cause heart disease. We had to check in as soon as I finished the PFTs, but the procedure was not scheduled until 2 pm.  

I was taken into a small pre-op area and admitted.  The nurse taking care of me, Amanda, was delightful (just like my niece Amanda, who is also a nurse).  She had recently earned her master's degree and passed the certification exam as a Family Nurse Practitioner.  We had fun chatting about that.  She is moving to Colorado, so I encouraged her to come to Union for her doctoral degree!  I will recruit anywhere and everywhere.  

The pre-op room was a frozen tundra.  One of the nurses said that even her sinuses were frozen. My favorite nurse, Amanda gave me warm blankets, and even draped one across my shoulders and back.  This was a great way to get a shout out on the evaluation I will be doing!  The only downside was that the blankets covered my designer gown.  This is a picture of Amanda and me.

If you thought I was going to get out of there without another stick, you were wrong.  It took two attempts this time to start the IV.  I believe this is 13 sticks for the week, and this is the fourth IV.  To commemorate the occasion, I took a picture.  Don't be jealous. 

They got me into the cath lab around 3:30.  The cardiologist was such a nice man.  He was funny and upbeat.  Here is his artwork - and he did not charge extra for it.

I had a heart cath about 5 years ago, and I refused the sedation because I wanted to hear what the doctor was saying.  Well, this time they had to access vessels in my neck as well as my groin, so I let them give me the drugs.  There is just something about a needle in your neck......... They could not use my wrist because of my height (or lack thereof).  Oh yes- that added two more sticks for the week.  Anyway, whatever they gave me was great because it relaxed me but did not affect my ability to interact or remember.  Also, I never felt the stick in my neck.  I did feel the one in my groin, but it was not bad.  The best part was that the entire test was normal.  

I had to wait for two hours with pressure on the areas and with my head flat on the  pillow.  I was starving by then, so I ate the pastry Michael brought from Au Bon Pain.  Yes, you can eat with your head flat on a pillow if you are hungry enough.

As I was lying there waiting I remembered how badly I hate being in the hospital.  I was so very tired and I just wanted to get back to the hotel. I was so thankful that we did not have to drive back to Jackson, even though I wanted to be home.

Buh-bye, Vanderbilt!

We left the hospital around 7:30 pm.  I was drained.  I was exhausted.  I was overwhelmed.  On my Facebook memories, there was a old posting from my dear friend Jan Brazeau.  I met Jan during a mission trip in the Dominican Republic.  Her wonderful late husband Steve was a dentist, and Jan is a nurse.  They had been full time missionaries in the past, and still brought teams to the DR each year.  I learned so much from Jan, and she inspires me to this day. She is a faithful servant of the Lord, and a treasured friend.  It was no coincidence that her quote popped up today- I typed it at the beginning of this post.  I needed to hear it!

Now I wait.  The transplant team meets on Fridays to discuss the people who have completed their evaluations.  I will get a call at some point telling me their recommendations.  It will be one of these things:

                           You are not a candidate for transplant 

                                    We need more tests
         You are a candidate, but you are not quite "sick enough" at this point
                    You are a candidate and we want to list you now

Listen to Mandisa sing "Overcomer."  This may be my new theme song.

Transplant evaluation day 3: Far from over

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding

~Steven Curtis Chapman

Today was another FULL day. Whew!  I started out by seeing the transplant pulmonologist, Dr. Shaver.  She is wonderful!  She is brilliant AND she has a great bedside manner.  She had some of the results of my tests.  Many things were completely normal.  However, there were a few things to discuss.

I do not have antibodies to chicken pox, even though I have had a positive titer in the past.  The varicella vaccine is a live virus and they do not want to give it to me due to my immunosuppression, but after transplant I would be even more immunosuppressed, and chicken pox could be very serious.  I also do not have antibodies to Hepatitis B, even though I have had the series of vaccines twice.  Fortunately, I was scheduled with the infectious disease doctor next.

The CT showed a nodule in my pelvis, but I have actually have that evaluated before and it is nothing of concern.  The radiologist is going to request the scans.

Finally, I have antibodies to human tissue, called HLA antibodies.  These are made when you are exposed to human tissue, such as after a blood transplant, or during a pregnancy.  Most women have some of these.  The issue for transplant is when the levels are high.  My level is 99%- in September is was 80%, but Dr. Shaver said "they found some more."  What that means is that 99% of lungs would not be a match for me.  It is not impossible to find that 1%, but they have to put you on the waitlist early, because it could take a  year or two to find a match.  This was not news I wanted to hear.  Dr. Shaver (who is also an immunologist) said there are things that can be done to find those lungs.  Part of this has to do with the lung in a box.  This is a fascinating new tool for keeping lungs viable before transplant. Click on the link and read about it!

The various specialists I have seen have already been communicating with each other.  The selection committee will meet this Friday, and I should hear about that next week.

This is the amazing Dr. Shaver.  

My next visit was with the infectious disease doctor, in a different building.  I got there a few minutes late, but he was running behind.  I was immediately stressed because the next visit in a completely different office (we had to drive) was at 11:00 am.  The fellow came in to get my history, etc. at 10:00. Dr. Larue came in about 10:20.  He is a Union grad!  He graduated with a degree in chemistry in 1998.  Some of his professors are still there.  Dr. Larue only does transplant infectious disease, and does not see anyone who is not a transplant patient    He is also very smart, obviously.  

We talked about the chicken pox and Hepatitis B issues, and also my extensive traveling.  He wants me to repeat the Hepatitis B series.  Due to my immunosuppression, he does not want to give me the live virus chicken pox vaccination, and recommended the new shingles vaccine, Shingrix.  It is not a live vaccine.  However, there is a national shortage, so I need to call and try to find it.  I also have to have a tetanus booster.  More sticks!

I did not leave there until 11:00, which was when I was supposed to be at the next appointment.  

Dr. Larue is in the center.  Sam the fellow is in the lab coat.

Meanwhile, my daughter Christy called.  She was coming in from Jackson as a secondary caregiver was required to come to the afternoon appointments.  It was sleeting and snowing in Jackson.  I called the transplant office to see if she could Face Time, but she had to be there in person.  This increased my anxiety level.

We hurried to West End for the next appointment, which was with the allergist.  We were only 15 minutes late!  I am allergic to two drugs, itraconozole (caused a rash) and azithromycin (severe reaction).  The purpose of this visit was to determine whether or not I am really allergic to them.  A fellow came in and took my history, etc.  She told me I would need to be there for three hours for the testing.  My next appointment, the one my daughter was driving through the snow for, was less than two hours away!  My anxiety increased even more.  

Dr. Phillips came in and talked with me.  The test for itraconazole allergy consists of a skin patch which has itraconazole on one end, and petroleum on the other end. I have to remove the patch on Friday, take pictures every day, and email the pictures to her.

I had to reschedule the second test, during which they will give me a tiny dose of azthromycin, and watch me for an hour.  If I am okay after an hour, they will give me a larger dose and watch me for two hours.  This test is scheduled for January.  The delay will not be a problem with the selection committee meeting.

We actually made it to the appointment with the social worker just exactly on time!  We had not had a spare minute and I was starving, so those snacks in my bag came in handy. Our daughter was slowed down by the weather, but arrived just a few minutes after 1:00.  During our meeting the social worker asked questions about our family situation, my support system, and our feelings about transplant. He asked Christy what she thought was the reason I am able to cope so well.  She said my faith, and my knowledge.  

Next there was an educational meeting with the transplant RN, Erin.  Another family was present.  Erin talked to us for almost two hours about how the transplant process works, and all the things we would be facing.  I will have to stay in Nashville (a maximum of ten minutes away) for three months.  Someone will have to be with me all the time.  

What a crazy day.  There were no tests today, but the schedule was hectic and there is quite a bit of information to process.  Christy is traveling back to Jackson in the sleet and snow, and Chelsea is driving here in the rain so she can be here for the visit with the surgeon.  I am so grateful for my daughters, who have put their lives on hold to be there for me.

The news about my HLA antibodies today caused me to pause.  In thinking about that, I realized that God is bigger than those HLA antibodies.  If he wants me to have a transplant, then those lungs in the 1% will be available. God is still writing my story!  Whatever happens, God will be glorified.  Just you wait and see- you will be amazed!