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.