Back to the hospital

I couldn't run, couldn't run from His presence

I couldn't run, couldn't run from His arms

He holds the stars and He holds my heart

With healing hands that bear the scars

The rugged cross where He did for me

My only hope, my everything

~Chris Tomlin

As you may recall, I was discharged from the hospital on day 6, after a double lung transplant and a second surgery to evaluate bleeding.  I think that may be a record- I need to ask. We got to the apartment around 6 pm on Wednesday, January 30th.  It was freezing that evening, and I was overjoyed to be out of the hospital and in our warm cozy apartment.

You may think that the three months I have to stay here will be boring, and that I will be sitting in a chair watching TV, reading, and working on my blog.  Not so much.

At 7 pm and 7 am every day, we have the following things to do.

Take medicine.  A total of 32 pills, 6 doses of liquid medicine, a twice a day IV antibiotic infusion, and a shot in my abdomen to prevent blood clots.

(I have no idea why there is white behind the text.  I have tried to fix it but you can see that I am not skilled with these things.  So it's all good.)

Check my weight.

Check my blood pressure, temperature, heart rate, oxygen saturation, FEV1 and FEV6 (breathing tests).

All of these values have to be recorded.  There are instructions about what variances need to be reported.  This blue notebook contains all kinds of important information and we have to take it to every appointment.

Needless to say, I was exhausted.  I just wanted to get in the bed.  Unfortunately, I learned very quickly that I could not yet lie in the bed without a great deal of discomfort.  I slept (some) in the recliner.

The next morning I had to be at the lab at 7 am.  Really?  I just left the hospital!  I wanted a break, but transplant is hard work! This was after all the vital signs, IV infusion, etc. at home. At least once a week I will have to have blood drawn for all kinds of things, but one of the most important values is my Prograf level (tacrolimus, or affectionately called "tacro" if you are a cool transplant recipient).  The level of this drug drives the dosage you take, and at first the dosage will change frequently.  I will be on this drug the rest of my life to prevent rejection, along with Cellcept and prednisone. Prograf is hard on the kidneys.  You may know that a significant number of transplant recipients eventually need kidney transplants because of the damage that can be done by anti-rejection drugs.  If my level is changed, I have to have extra labs done after a few days.

One of the other tests they have been doing every week is to check for CMV, or cytomegalovirus.  Over half of adults have been infected by this virus by age 40, and never know it because their healthy immune systems keep this virus from making them sick.  Once this virus is in your system, it can reactivate.  Those of us with compromised immune systems (and newborns) can become very sick with this virus.  My donor was negative for CMV, and I am positive, but they will still keep a check on that.

I also have to have a chest xray at least once a week, and I will go to the pulmonary clinic for spirometry- this is just one of the pulmonary function tests I have been doing.  You want me to do what?  Take a deep breath and blow out?  But I have staples from one side of my chest to the other!  I had surgery only a week ago!  Okay, I will try it.  Yes, it was painful.  However, my FEV 1 was 43% even with all of that.  It was 24 % before surgery.  This is amazing and made me very happy.

Next I saw Jean, one of the nurse practitioners in the lung transplant program.  She is awesome!  So compassionate, patient, and brilliant.  Just look at her smile.  You can tell that she has a heart for what she does.

By the time I saw Jean, I was in so much pain that I could not concentrate much on what she was saying.  It had only been a few hours, but I was exhausted.  She could see this (because I certainly was not going to tell her!), and we talked about pain control.  I have been doing fine with pain!  What in the world?  She talked to me about taking a pain pill at least every morning and every night for a while.  She also added neurontin to see if it would help.  I really don't like pain medicine because it makes me feel bad!  But this time, when we got back to the apartment, I took a pain pill right away.

I was supposed to start rehab the next afternoon.  Gulp.  So the rest of the afternoon I rested.  We ate, and I slept (some) in the recliner again.  The next morning we repeated the vital signs, IVs, and meds.  I sat down in the recliner, and began to feel a squeezing pain in my upper chest.  It was weird.  Then I threw up twice over the next hour or so.  I thought it was due to all the water I had to drink with the medicine.  I called the transplant office, and they asked me to go to the ER to be evaluated.

Let me just give a summary of the next six days in the hospital.  In the ER, one of the things they said is that I had a "non- stemi," which is a heart attack, because I had a small increase in an enzyme called troponin.  There was a lot of controversy over that.  In the ER, my heart rate was fast, my blood pressure started decreasing (74/30), and my white blood cell count began to rise. These are criteria for septic shock, which is a really big deal.  They admitted me to the medical ICU, and started pouring fluids through me to raise my blood pressure.  Those things all got better, but the large amount of fluid caused me to swell like crazy.  I ended up 20 pounds more than my pre-transplant weight.  I was eating well, but not that well! 

(Side bar- a few well meaning people said "you need that weight," "you are tiny" rolling their eyes- friends, this is FLUID, not healthy weight!) I was miserable.  It hurt to move my legs.  My fingers were like sausages.

One of the first things they did was start an IV in my foot because there was no where else.  I stil had my PICC line, but they needed another site.  This was before all the fluid.

Unflattering picture coming- this is what they called "mild" swelling.  It actually got worse.

Meanwhile, they fluid caused there to be pleural effusions, and also a little fluid around my heart.  They drained the effusions (it did not hurt!) and I could breathe so much better, but the effusions came back (not uncommon).

Don't I look cute?  A fancy gown AND a special hat!

Tools of the trade.

Cute masks Christy got me.

I was moved to the transplant floor pretty quickly.  That is a wonderful place if you have to be in the hospital and you are a transplant patient.  Most of the patients there have had kidney or liver transplants.  

This is Marissa, one of my awesome nurses.  She is a live liver donor!  She gave her aunt part of her liver when she was only 18.  What a hero!

During this hospitalization, they found that I had something called and acute kidney injury (AKI) known as acute tubular necrosis.  It is not uncommon to have this after a long surgery.  Kidneys do not like long surgeries.  Also, when my blood pressure was so low, there was little blood perfusing my kidneys.  Usually this will resolve itself over a period of weeks, but the monitor a lab value called creatinine (among others).  My value kept rising, so they would not let me go home, even though I felt wonderful.  I was making 10 laps a day around the nurses station, eating, not needing pain medication, and I was ready to go.  The kidney issue meant that the fluid was not going anywhere.  

One of our NP grads, Amber Steele, came to visit.  She is an amazing person and a wonderful nurse practitioner!

This is Anne Gallion, one of our current nurse practitioner students.  She is in our doctoral program and is amazing.  Anne works on the transplant floor and came by to see me.

I saw many "teams" of doctors, nurse practitioners, physician assistants, nurses, pharmacists, etc.  Surgical team, infectious disease, nephrology, cardiology, internal medicine, etc. I was so impressed by all of the teams.  They treated everyone with respect, they communicated with each other, and they went out of the way to make sure that I was kept informed.  I also told every one of them about how miraculous my situation is.  They heard me and my family give all the glory to God.

This is one of my favorite teams- part of the surgical team. On the left is Dr. McMaster.  He is a fellow with my surgeon, Dr. Bacchetta.  Dr. McMaster was the one I saw the most.  He listened to me and advocated for me.  He was in the OR with Dr. Bacchetta for my transplant. I do not remember the name of the young lady in the back- but she was equally as wonderful.  I had intended to write down names, but failed.  But you know what?  God knows their names.  

On the right is Dr. Gillaspie.  This was the first time I met her.  She is so bubbly!  She is the surgeon who went to get my new lungs.  She told me how healthy they are!  She also was the surgeon in the back of the OR, getting the new lungs ready as my old ones were removed. Just look at all these smiles.  You know they are probably exhausted, but I believe with all my heart that they love what they do!

Finally my creatinine started trending downward, and they let me go home- even though it was not normal.  A additional positive thing is that my IV antibiotic was completed while I was in the hospital, so that was one less thing to do at home- nurse Michael was happy!

Bye bye Vanderbilt- well, until tomorrow.

The gift of new lungs part 3: Healed

I am the Lord, who heals you.

~Exodus 15:26

For many years, well meaning friends, colleagues, patients, and acquaintances have given me advice on how I might be healed. If I went to this church, or prayed with these people, then I would be whole again.  I would politely thank them, because I already knew God would heal me- he promised to- but it would be in his time and in his way.  I would not have to do anything to earn it or facilitate it. On January 24, 2019, a family in the midst of deep greif gave me the greatest gift a person can give.  God took that priceless gift and healed me through the miracle of transplant. His time, his way.

This part of the story is the most important, because it is indeed where the miracle of healing takes place, but it is also the most difficult to write about, because I was under anesthesia.  I am relying on a timeline my family helped me with, and medical records.  If you are squeamish, be advised there are some pictures (nothing inappropriate) that you might want to scroll through.  

If you recall, I was given phenergan which made me sleepy, so I do not remember going to the OR. 

Wednesday, January 23  10:16 pm:  taken to surgery

Thursday, January 24 12:40 am:  family notified surgery was beginning

Thursday, January 24, 8:30  am:  family allowed back into room with me

According to the records, I did very well in surgery but I did have to be placed on ECMO (heart lung bypass).  This is not uncommon, and I was able to be taken off before I left the OR.

This is not a flattering picture, but I wanted you to see what all is involved.

 I asked my family to give me some of their thoughts during this time. This is what my daughter Christy had to say :

Thoughts during your surgery...

I was worn out, as we all were. We were going on almost 40 + hours of little to no sleep by the time they took you down for surgery. I was relieved it was finally here but then a new worry began. Will you make it through, will there be any complications, will the lungs wake up, how long will it take....? I tried to stay in your room but I wanted Meemaw and Dad to be able to rest in the more “comfortable” chairs so I went to the waiting room. I tried to get Chelsea to go with me but she would not leave because she wanted to hear all the updates when they called. I gave them strict instructions to call me every time they got an update. Off to the waiting room I went. I found pillows, blankets and a quiet corner. I got settled down and began to pray... for you, the doctors and nurses, and the donor family. It’s all I knew to do. I tried to sleep off and on. Every time I woke up I looked at the clock. I waited on updates and prayed in between. I tried not to think too much... I didn’t want to let my mind wander and go to places it didn’t need to. I was trying to start positive. I prayed, slept and waited on updates. Morning came- we got the last update that the surgery was done. I went back to your room as the nurses were getting everything ready for you to come back. They sent us out of the room and I don’t really remember much after that until I got to go back and see you. It was as I expected... chest tubes and IV drips and monitors and the vent. I was glad to see you on this side of the surgery. There was a feeling of relief. It still didn’t seem real because everything happened so fast from the time of your evaluation to you being listed to you getting the call. And now you have new lungs. I kept a close watch on your vitals. You were a little tachy and the ICU Doctor thought you were in A Flutter but wasn’t overly concerned. They watched you closely. Everything else was great though. Chelsea and Meemaw came back. They did okay seeing you. I was worried about them but they did well. Dad went to get the apartment. I knew Meemaw was exhausted so after a few hours and you remaining stable, we decided I would take Meemaw home and I would I come back the next day. We left around lunch time. 

What in the world is in all these IVs?  I want a chocolate drip!

More?????

I had six chest tubes, 3 on each side.  

They were connected to these drains.

When you return from your lung transplant, you are assigned one nurse for the first day.  I think you can see why.  During the day on Thursday, the nurses were watching the drainage from the chest tubes closely.  Due to some increased drainage, they did not try to wake me up at that point.  Around 8:30 that night they decided that I was bleeding and took me back to surgery.  The doctors had Michael sign informed consent after telling him all of the bad things that could happen.  They opened one side and found a large clot and some blood, but no active bleeding and they also could not find a reason for the bleed.  This actually happened to me during two previous surgeries, so my family was not surprised.  I have had a full work up and no issues were found.  I did tell all of the doctors this before my transplant. I guess now they know I was telling the truth!

So that was the first "bump" in the road.  I came back to the room and was extubated at 7:30 the next morning!  My family tells me that the night nurse would not leave until I was extubated. How sweet is that?

I remember waking up and realizing I was alive.  What a wonderful feeling.  I also realized that I was neither restrained nor intubated.  Now don't laugh, but I thought I would wake up singing.  I have seen one too many You Tube videos.  You may recall that one of the things I want to do is sing again.  I love contemporary music, but in this case I was going to sing "Great is Thy Faithfulness."  Ha!  I had staples from beside my sternum around to both sides. I had chest tubes, IVs, and all kinds of fun things.  I could not expand my chest well at that point.  Plus my throat was sore from the tube.  There was no singing.  I was begging for water. I was not on any supplemental oxygen, but my breathing was just what you would expect in those circumstances.

On Friday January 25, at 1:19 pm they put me in the chair.  Again, not a flattering picture.  Of course the designer gown helps.

At 2:55 pm I took my first walk.  This is just hours after not one, but two surgeries.  The nurse on the right is Eric, and he took care of me for several days.  He is an excellent nurse.  Amanda is the nurse on the left, and she was also amazing!

On Sunday, January 27, I was taken to a step down unit. 

Here is one of the chest tubes after they removed it.  It is about the diameter of my middle finger.

Just a quick history of lung transplant surgery- which is relatively young. Please hear me say that alll transplants are serious, and have their own set of challenges.  I am just speaking to lung transplants.  The first lung transplant was done in 1963, and the patient died in a few days.  Only 36 lung transplants were done over the next 10 years, and all patients died in less than a month.  In the early 1980s, techniques were improved, and some limited success was achieved.  Now there are over 250,000 lung transplants done each year around the world. Outcomes are improving, but rejection is still higher for lungs than any other organs.  Once lungs are procured, they must be implanted within 4-6 hours.  Lungs are scarce- only about 28% of donor lungs meet the criteria for transplant.  Lungs are the only organs exposed to the outside elements.  Each time you take a breath in, you risk infection.  Lung transplant patients must stay close to the transplant center for 3 months post surgery, which can be a financial burden to families. Lung transplant surgery is one of the most complex surgeries that can be done.

So what were those post-op days like?  First let's talk about pain.  They use an epidural which is very effective and helps reduce the amount of narcotics you need.  I used  1-2 pain pills the first few days, and then only Tylenol.  My pain was well controlled in the hospital, with one exception.  One night they came to do an ultrasound of my extremeties and I had to move around alot.  All of the sudden, the pain escalated through the roof.  Thankfully the nurse was on top of things and  brought me medication quickly. That never happened again.  

There were lots and lots and lots of pills.  At first they were crushing them in applesauce and that was disgusting.  There were also 3 heparin shots a day, and occassional insulin.  My appetite actually came back after only a few days.  I tried hard to eat high protein foods for healing.  

I had a chest xray every morning.  There were blood draws several times a day. My veins are terrible, so I had a PICC line, which made things easier for me.

There were teams of physicians, fellows, residents, nurse practitioners, and physician assistants rounding non stop.  They were all so respectful of each other and seemed to communicate well (this does not always happen in the hospital).  Everyone who came in the room asked us if we needed anything before they left. 

I wanted to spend most of my time up in the chair because it made me feel better.  I walked laps around the nurses station for the same reason. I felt more than ready to go home (well, to our apartment, which I had not even seen yet).

When the time came for discharge, the clinical pharmacist and the transplant nurse practitioner came and taught us about all the meds and the things I would need to do outside of the hospital.  Michael would have to give me an IV antibiotic twice a day for the next week. Everything is in a blue notebook, and we would need to bring the notebook with us to all of our appointments.  We were given strict instructions for all aspects of my care.  Now I see why they want you to have a caregiver and a "spare."  It is alot to take in.  The surgery may be over, but the journey to recovery is just beginning. 

The gift of new lungs part two: from the call to the OR

But he said, "What is impossible with men is possible with God."

Luke 18:27

Tuesday, January 22nd.  Monday was a holiday, so I was eager to see my colleague Dr. Cathy Ammerman and hear all about the mission trip.  I shed tears of joy and sadness as she painted vivid pictures with her words.  What a great time the mission trip team had last week!

After Cathy left my office, Dr. Brian Foster dropped by.  I always love catching up with him.  The rest of the anesthesia facutly was with their team in the Dominican Republic, so Brian was holding down the fort here.  We had barely begun talking when my phone rang.  I saw that it was a 615 area code (Nashville), and wondered what test I needed to do now.  I apologized to Brian and took the call.    It was around 10:30 am and the call went something like this:

Hello, this is Shelley and I have accepted lungs for you.

Me:  Wait, you must be mistaken.  I am the person with the 99% antibody level.

Shelley:  Yes, I know.  The virtual crossmatch shows a match.

Me:  Oh, Dr. Robbins said I would need a "real" crossmatch.

Shelley:  Ok.  I need for you to call me back at 2:00 and I will give you further instructions.  

I was in shock.  I had only been on the list for 11 days.  I was prepared to be listed for years.  This was unbelievable.  To find a match for size and blood type is challenging, but to match only 1% of that group is nearly impossible.  But you see, God is not limited by anything.  Statistics belong to him!  I was also overcome with sadness for the family of the donor, and I can tell you that feeling never goes away.  They are the real heroes.

The news quickly spread within the College of Nursing, and all of my colleagues were rejoicing.  I called my husband, girls, and my mother.  In the meantime, Shelley called me back and asked me to come on to Vanderbilt and check in so they could draw my blood for the "real" crossmatch.  She also wanted me to go ahead and eat. 

Brian graciously drove me home, followed by another good friend and colleague, Brad Creekmore.  I thought I could drive myself, but I am glad they stepped in. I got some things ready, and Michael and I were soon on our way.  We ate at our favorite gourmet restaurant on I40 once again.

Michael and I arrived at Vanderbilt and checked in around 3:30 pm.  Around 8 pm they had my room ready.  All of the lung transplant patients start out in CVICU because that is where they go after surgery.

Even though a patient only has a short window of time in which to get to the hospital, it can be a day or two before the surgery begins.  That is what happened with me.  The night of the 22 turned to the morning of the 23.  We were not really sure what the delay was, but the nurses and doctors did a great job informing us as they could.  Unfortunately all they knew was that no one was enroute to procure the lungs yet.  There was a bit of bad weather, but it is possible that several organs were procured, and scheduling the timing of teams coming in could be very challenging.  

Two of my dear friends, Tracey Holmes and Betsy Taylor, came by to see me.  They are so fun!

My good friend Carrie Kucera, who practices anesthesia at Vandy, came by to say hi.

During the waiting period, I had blood drawn, IVs started, and I had to take three different showers.  I was amazed at how calm I was during all of this waiting.  That was not me at all- God was holding my hand- and my anxiety- every step of the way!  My poor family was exhausted from trying to sleep in hard waiting room chairs. All of the staff- nurses, physicians, students- went over and above to make us comfortable.

I just could not get over the fact that I had only been on that list for 11 days.  There was no explanation for this other than a miracle.  I told everyone who came in my room about it.  Even the doctors were amazed at the 11 days and 99% antibody issues.  The likelihood of getting lungs at all was slim, yet here I was 11 days later, with an offer of not one, but two healthy lungs.  

The surgical team, led by the fellow, came in several times.  I had a chance to talk with them about my surgeon, Dr. Baccheta.  More than one person described him as a "machine."  Wow.  Laser focus.  Unwaivering.  Top notch skill.  They were impressed with him, so I was too! 

Sometime during this period of time we found out that the "real" crossmatch was perfect, so everything was on go.  Of course there was still the possibility that the lungs would be deemed unfit once the surgeons went to procure them.

Around 8 pm on the night of January 23, we were told that the surgery should happen around 9 pm.  I was still calm- until 9 pm arrived.  All of the sudden I was overcome with emotion and worried about my dog (don't judge).  I was not sure I wanted to do this after all.  I was nauseated, so the nurses brought me medication for the nausea, which also made me sleepy.  

At 10:15 pm on Wednesday January 23, the anesthesia providers came to the room and wisked me off to surgery after my family prayed over me.

The Gift of new lungs part 1: waiting

"I do not kow why there is this difference, but I am sure that God keeps no one waiting unless He sees that it is good for him to wait."

C.S. Lewis

I left off with our mission team leaving for the Dominican Republic during the wee hours of January 13, taking a piece of my heart with them.  How I longed to be on that bus!  If you read my last blog, you will know why I was 100% sure that I was not to go.  I had faith that God had a reason for my staying, yet I was still grieving the experience I have in the DR.  I think that's ok- just because we are obedient, we still have emotions.  Boy, did I have emotions that week.

I spent most of Sunday crying, and when I got to work on Monday, I did the same.  My sweet assistant  Charlotte was so comforting, but no one could really understand.  No one except my dear friend and colleague Dr. Molly Wright.  She is a woman of great faith with a servant's heart.  She leads our anesthesia students on the same trip in January and loves it like I do.  I went to her office and she graciously allowed me to vent and cry, saying that she could not imagine not going.  Waiting can be painful, even though we know that what is coming is more than we could ask or imagine.

The students and facutly were so wonderful, texting me pictures and videos.  Our missionary friends did the same!  I was being prayed for by so many, and to know that I was being prayed for in the DR was so refreshing!  I felt the power of prayer!

This is a baby wrapped in one of the loveys made from Amanda England's scrubs by Jaqueline Smith.  ( Amanda was a graduate who passed away after a valiant battle with a brain tumor.)  What a wonderful way to honor her.  She would have loved this.

One of my favorite pictures!

 The students sent this video of my favorite song to sing during praise and worship time "Yes Lord!"

There is actually a video with them dancing to this but I could not get it to upload.  It is on Facebook.

We tried to Face time the evening devotionals, but it did not work well.  I am so grateful that they tried!  The students and faculty made me feel like I was a part of the trip, and I am overwhelmed that they would take the time to do that.

Thursday was tshirt day, so here I am in mine!

We always have a pizza party on Friday night, and invite our friends from SCORE.  It is a wonderful time of celebration.  Here is my pitiful attempt to recreate the menu.  Let me say now that Little Debbie cakes do not hold a candle to Jumbo cake!

During the week of the trip, I began to think more about transplant.  What are my expectations?  What do I want from it?

I do not plan to climb Mount Kilmananjaro.  Maybe a 5K (as long as it goes past a cupcake store).

I am not a fan of housework, but I would like to be able to do laundry without becoming so short of breath I have to stop and take a break.

 One of the most difficult things for people with end stage lung disease to do is push a vaccum cleaner.  I have not vacuumed in years.  I would like to be able to spot vacuum and not have to ask someone else to do it.

Changing sheets is nearly impossible for me. 

I would love to never park in this spot ever again.  It took me a long time to give up my pride and use this spot, but I hate doing so. 

There are many mundane things I will enjoy doing with new lungs.  Don't get me wrong- I will be glad to have someone else clean the house.  It's just that I want to be able to do it if I choose. I want to be a fun Nana to my grandchildren, instead of being sick all the time.  

I want to sing.  I miss it so very much.

I want to travel.  I want to do more missions work.

I want to do whatever it is God has planned for me.  I cannot imagine what that might be at this point.

A week later,  Michael and I met the bus in the wee hours of the morning of January 20, as the group returned.  Headlights instead of taillights- what a great sight!  As this group was leaving the DR, our second team was arriving.