Saturday, June 18, 2016

My Lung Transplant

At 6:00 PM, on December 31st 2014, we received "The Call".  A member of the Transplant Team called, let us know that there may be a set of lungs available, and told us that we needed to get to the hospital.  This was the second time that we had gotten "The Call".  The first time was a couple weeks earlier at zero dark thirty in the morning.  That time turned into a dry run due to the lungs being infected with pneumonia.

We were watching our granddaughter when the call came in.  We grabbed the go bag, dropped our granddaughter off at her friend's house, and off to UT Southwestern we went.

It is hard to describe the emotions that I went through while waiting for news on weather or not the procedure would move forward.  There was excitement at the possibility of a new life with healthy lungs, and fear that I would not make it off of the table.  I felt concern for my donor family, what a horrible way to be spending New Year's Eve, and more concerns about what would happen if the procedure did not go well.  I did not want to live on a ventilator.  I spent a lot of time with my Dad while he was intubated, and  that is not how I wanted to spend the rest of my days.  My family and medical team understood my wishes.

Here is my Sweetie and I waiting for news on the donor lungs:

At about 9:00 PM we were told that the lungs appeared to be in good condition and that the recovery team would be transporting them to Dallas soon.  At 3:00 AM we learned that the surgery was scheduled for 8:00 AM.

While prepping for the transplant, there are lots of labs to be taken and IV lines to be installed.  By the time they came to transfer me to the Operating Room, I was ready to go.

The surgical team were very professional, and kind, as they finished prepping for the procedure.  The last thing I remember is the Doctor entering the room and saying "Knock him out, it's time to get started".

My bilateral lung transplant was performed using the "Clamshell" technique. The incision goes pretty much from armpit to armpit and they open the chest up like a clamshell.  You can read more about the procedure here if interested.

I woke up in the ICU, and I wasn't on a vent. I was so happy.  There were wires and tubes everywhere, but I was alive.  Here is a cropped image of what I looked like post surgery.

I'm still a bit swollen.  The four tubes coming out of my chest are for drainage and kept my chest from filling up with liquid.  You can see my PICC line and yellow hospital gown.  Yellow indicates fall risk.  I kind of hate wearing the yellow gowns and socks now.  When I go in for routine broncoscopies, they put me in yellow.

You would probably be surprised at just how quickly they get you out of bed following a major procedure like a bilateral lung transplant.  It seems like no sooner was I awake that two physical therapists had me standing and working on my balance.

Being able to sit up, stand, and move around are all very important steps in recovery from the lung transplant procedure.  The more you are moving around and not laying down in bed, the less chance you will get pneumonia.  This is why I always recommend to folks looking to get a lung transplant that they keep those leg and core muscles as strong as possible.  Squats and lunges are optimal, but even standing up from the couch during TV commercials will help keep you strong.

Another important tool in lung transplant recovery is the incentive spirometer.

I really did not like the incentive spirometer.  To use this tool, you breathe in through the spirometer at a constant flow and try to move the float as high as you can.  You need to do this a lot, a whole lot.  It doesn't feel good and it is a bit of a pain, but it helps keep the new lungs clear and helps them to expand.  Early on I was happy with a reading of 1200, I can top it off now.

I failed the swallow test and a feeding tube was inserted through my nose.  I ended up failing a second swallow test and going home on the feeding tube.  They had to tie it into my nose to keep it from pulling out if it was tugged on.  Not pleasant, but doable.  Here I am at one of my post-hospital clinic visits.

Before I knew it I was out of the ICU and up on the 10th floor in the wing reserved for the Transplant Team.  The 10th floor is my home away from home. It's where I end up when I'm back in the hospital.  It is kind of nice knowing that if necessary, there is a team ready and waiting who understand your special needs.

Recovery included physical therapy, and walking, and more physical therapy.  We had several visits with the pharmacist who taught us about the meds, their side effects, and how/when to take them.  We probably spent 4 hours with her making sure my Sweetie and I understood all of the meds.  While on the feeding tube, most of my meds had to be crushed and injected into the tube.  We also had at home IV's that needed to be administered.  There is a lot of information that needs to be digested by both the patient and the caregiver.  Messing up the meds is one of the major reasons patients are readmitted to the hospital post-transplant.

Pain?  Yes, there was a good deal of pain.  The medical team is well experienced with helping deal with the pain.  If you hurt, let them know.  One of the main sources of background pain were the drainage tubes. Once those were removed, I felt much better.  The pain meds help you get up and moving, and as I mentioned, getting up and moving is very important.

The hospital stay included lots and lots of tests, a Broncoscopy or two, a ton of X-Rays, and more labs and tests.

I was released from the hospital 9 days after the transplant.  That was scary, but we did well. I took my first shower without oxygen the night we got home, it exhausted me.  It took about 20 minutes for me to dry off and get to the bed from the shower. That was when I decided that I needed to get strong and committed to becoming physically fit.

We spent a whole lot of time over the next several weeks at the Transplant Clinic, daily labs and exams as they tracked my progress and dialed in the anti rejection meds.  I finally passed the swallow test on Jan 21st and had the feeding tube removed.  It was great to be able to eat real food once again.

About a month post transplant I had a moderate/severe acute rejection episode that was brought on by a virus.  The Team did an awesome job of resolving the rejection and prevented any permanent damage to my new lungs.

Speaking of new lungs, here they are -

Don't they look pretty great?

It's been nearly a year and a half since my transplant, and I am doing very well.  I exercise daily and feel great.  My incision site is still tender, especially after doing push/pull type exercises. That tenderness is no big deal, just shows I continue to heal

The Team did an awesome job putting me back together and my scar is almost gone.  Here is what it looks like today:

Yeah, I trimmed my chest hair so you could see the scar better.  One of these days I will be able to do a pull up all the way to that scar.

That's pretty much it.  If you have any questions about the transplant, ask away.  I'll be more than happy to answer them.


  1. Awesome post. I didn't realize that scar was that far down, I thought you were cut vertically, not horizontally, doing a pull up to your scar will be a huge accomplishment. :) NM

  2. And that pull up quest was all your idea :)

  3. Awesome dad. You all should see him in real life. A super hero if there was ever one.

    1. My donor family are are true Superheroes. Without them I wouldn't be here to tell this story :)

  4. Such an informative article. I surely hope other sufferers find this blog and learn from it. You are amazing as is your wife. Love the comment above from your daughter (I'm assuming). Big cheers for your continued pullup quest.

  5. Thank you for sharing such helpful information. Health is indeed invaluable and important; therefore, we have to prevent disease while we still can.

    Medical Careers

  6. Hello John, thank you for sharing your awesome story with us and God Bless you. I have a question about the feeding tube. Did you know you were going to have a feeding tube before you had your lung

    1. Hi and thanks for stopping by. I knew there was the possibility of a feeding tube before I had my transplant, but didn't think I would need one. It took me a while to pass the swallow test and get off of the tube, I'm thinking about a month or so. I'd have to go back and check notes to be sure.

    2. Thanks so much for your reply. I'm so happy you finally passed the swallow test. Question: was the feeding tube in your stomach? Thanking you in advance for your reply.

    3. My tube was an NJ tube which passed thru the stomach and into the jejunum. I was on a continuous feeding pump and bolused all my meds but one, which I took under my tongue.

    4. Thank you for your information, my husband is getting evaluated for a lung transplant and they are telling him most likely he will have a feeding tube for the rest of his life. This is something we didn't want to hear. I'm praying this will not happen. Did they put the feeding tube after the transplant or before?

    5. My feeding tube was installed post-tx. After it was removed, there came a time when I came close to having one installed permanently. Thankfully a Nissen Fundoplication procedure resolved my issues. I'm sure that your team explained the importance of preventing stomach acid from getting into the new lungs. That is quite possibly what started my chronic rejection.