You’re On The Lung Transplant List

Congratulations! You’ve come a really long way. You’ve been through a lot, physically and emotionally, you’ve been poked, prodded, waited for results and you’re finally here.

It’s no doubt an emotional time, it weighed heavily for me. You’re waiting for your phone to ring with the news that there’s a set of lifesaving lungs available for you, but at the same time that means someone else’s life has come to an end. At the moment you get the call which may be the best possible news for you and your family, another family has just received the most devastating news imaginable.

Just even knowing that I was going to be listed, I knew that out there was someone who was probably living a normal life, maybe with a wife, kids, possibly in college, thinking they’ll grow old, with all the hopes and dreams that we all have. Except I knew something they didn’t, that some day soon their life would end, and that meant mine and hopefully a few others would be allowed to continue.

It weighs heavily, even though I/we as transplant recipients have no influence in their unfortunate passing. We know it’s going to happen, and there’s oftentimes this level of guilt that we feel. It’s normal, and human.

Getting Ready For “The Call”

At this point, you need to be ready. I mean that. I don’t care how low of a priority you are on the transplant list, because your phone could ring at any moment with the call that could save your life.

#1. Do not sleep with your phone on silent or DND. It seems like a lot of “The Call”s come in the middle of the night, and if you don’t respond within a certain amount of time, those lungs will go to the next person who answers. Depending upon how long the wait is, and how sick you are, this could be life threatening.

#2. Get your “Go Bag” ready.  What’s in a go-bag? It’s whatever you need to bring to the hospital, and that all depends on how far the hospital is from your home. I live 7 minutes from my hospital, so I brought almost nothing as my wife could bring anything later. If you live 6 hours from the hospital, you’ll certainly want some things and I’ll list some here:

  • Cell phone charger
  • extension cord
  • laptop or tablet for movies/etc
  • electric shaver
  • pajama pants (once urinary catheter is removed)
  • Underwear (multiple pairs)
  • slippers
  • change of clothes to leave the hospital in
  • hobbies/headphones/tablet/etc to keep you occupied on long days
  • small whiteboard to help communicate while intubated
  • pillow from home with extra pillow cases
  • comfortable blanket from home

Really, I wished I had thought of the pillow and blanket from home, it’s those little comfort items that make a big difference. Once I was able to finally put on pajama pants instead of just being “bare ass” in the hospital gown, it made everything so much more comfortable.

3. Have your personal affairs in order.  You have no idea what, when, or for how long you are going to be gone. You could get the phone call now and encounter complications that double your expected stay in the hospital, so make sure you have everything setup in your personal life for a sudden and extended absence as you may not be able to take care of anything for a while. You may be intubated and/or sedated in the hospital and unable to communicate longer than expected so make sure that bills are able to be paid by someone else, voicemail is able to be checked, etc. Plan for the unexpected!

Q&A about Lung Transplant Surgery & Hospital Recovery

This is all based off my individual surgery in 2025 at the University of Minnesota, as well as a few friends of mine who were also transplanted there.

First off, you’ll get “The Call”, I got mine at exactly 2AM. They had me verify my name, date of birth, asked me questions about my health, any recent travel, contact with anyone with illness, etc. Then told me they had a set of lungs that were a match and asked if I would like to accept them and asked when I could get to the hospital. I was told to arrive at 8AM but that surgery would probably begin at about 6PM.

I arrived at the hospital and strangely I don’t recall much about the day. It was a lot of final testing, final meetings, and a lot of waiting in a hospital bed. Finally in the late afternoon they started prepping me for surgery, they brought me into the OR “staging” room where the final prep was done, I said goodbye to my wife and mother, was wheeled into the operating room where there was an entire team of staff waiting for me and I was placed on the operating table. They introduced themselves and we did a safety stand down where I stated my full name, date of birth, then described in my own words why I was there and what was going to be performed on me. I thanked them all for their dedication and I said “alright, let’s do it”, and that was that.

What happened next I’ll save for my own transplant story, but the above should be about what to expect for anyone who gets the call and goes in. The only exception would be for what’s called a “Dry Run” which is an unfortunate situation where the surgery gets called off at some point, usually because the surgeon decides that something isn’t right with the donor lungs, typically when they arrive on site. Either they appear damaged, maybe the size isn’t quite right, or just something isn’t right, and the surgery is called off.  It’s extremely stressful for the patient and I’m thankful to have not experienced it.

Q. Does the surgery hurt?

A. Surprisingly no, not for me. Not in the slightest. I’ve had hand surgery, abdominal surgery, shoulder surgery, nasal surgery, minor leg surgery, and by far the most painful surgery was the shoulder surgery.  I had almost no pain or discomfort from the lung transplant incision, but did have some pain from some cracked ribs, but it wasn’t too bad.

Q. How long are most people in the hospital for?

A. Most people are in the hospital for about 3-4 weeks, but it varies a lot. I was in for 22 days but I had a lot of complications the first week. A friend had hardly any complications and was out in 15 days, I know some who have been in for 45 days. Going in healthy certainly helps, but it’s not a sure guarantee that it means a shorter stay.

Q. I’ve heard about delerium and hallucinations?
A.  This is true and quite common. Due to the combination of stress on the body, and all the medications in the system, it’s quite common for the patient to experience temporary changes in mental state which may include

  • extreme mood changes
  • irritability
  • hallucinations
  • auditory hallucinations
  • visions
  • delerium

While “normal” these should be noted to the nurses or doctors. It’s important to remember that as strange as they may sound, they are VERY real to the patient.  These symptoms typically resolve after a few nights of good sleep but I have seen some reports of people having lingering issues, and that is important to report to the care team. If your loved one is mean during this time, do not take it personally as it’s their brain having a difficult time with all the medications and chemical imbalances from the physical stresses happening on their body. The first few days of healing after a double lung transplant is similar to the body running a marathon every single day. 

Q. I’ve heard about people having to re-learn how to walk?
A. This can also be absolutely true! I thought it was simply for the very old and very sick, but it happened to me as well. Recovering in the ICU your body will rapidly burn muscle into calories as it runs its marathon to repair itself. I don’t know what day they had me take my first steps, maybe day 4? All I know is that I could only take 2-3 steps and I was completely out of energy and all I wanted to do was collapse into the bed. By day 10 I could barely walk to the bathroom with assistance. A couple days later I was making laps around the floor of the hospital. I was amazed at how much strength I lost so quickly, but it was fun to see how I was improving so much each day.

Q. What was your overall hospital stay like?

A. Well, I spent 10 days in the ICU which is more than twice the average, because I had an abnormal amount of complications early on.  In the ICU you’ll have a team of doctors checking up on you first thing every single morning. You’ll be visited by more providers than you could ever imagine, and it gets exhausting. The first few days you will look like you’re hooked up to every piece of hospital equipment imaginable, and that can be stressful for your family members to see, so make sure they know to be prepared for this. You’ll be intubated for at least a couple of days and unable to speak or make any noise. Nurses will constantly be coming to check on you, administering medications, checking vital signs, making adjustments to machines, repositioning you, etc. You will likely have a urinary catherter that was inserted during surgery, so you won’t have to worry about getting up to urinate, but you’ll probably have to use a bed pan until you’re able to use the toilet. Bed pans aren’t fun, but it is what it is. The nurses have done it a million times so don’t be embarrassed, even if you make a mess…it happens to everyone.

You’ll likely be on a feeding tube for a few days, so all your medications and fluids will either be through IV or will be crushed and pushed through your feeding tube, so you won’t have anything to eat or drink. I never felt hungry in the slightest and I was on my feeding tube for 20 days due to a complication.

You will have a chest X-ray in the room from a portable machine, likely before sunrise every single morning so that doctors can review before they make their AM rounds, as well as blood draws a few times a day to check for certain medication levels in your blood stream.

You will have pulmonary therapy multiple times per day, sometimes just nebulizer medications to loosen mucus or prevent infections, and sometimes with percussion therapy to help loosen mucus and expand your lungs.

Physical therapy and occupational therapy will stop by, likely once a day.

You will at some point be weened off your ventilator, this is when they turn off your ventilator to let you breathe on your own. It’s to check to see that your diaphragm is strong enough and to help strengthen the muscles. Once the doctors have determined you are strong enough, then they can remove the breathing tube and you’ll be able to breathe on your own, with your new lungs!  But, you might still be on high-flow oxygen for a few days as it still takes time for the new lungs to fully work. Note: it can take over a year for your lungs to fully reach full capability, I’m over 13 months out and still improving

One of the nice things is you will notice that less and less equipment is hooked up to you, and less and less equipment is in the room through your stay…eventually, you’ll have none!

At some point you will graduate from the ICU and be moved to a regular recovery unit. 

The rooms tend to be a little nicer and the beds a little more comfortable, you’ll have a little more downtime through the day, but it’s still going to be constant vital signs checks, medications, machines beeping, physical therapy, doctor visits, pulmonary therapy, blood draws…just a few less than the ICU.  But, by this point you’ll probably feel that you’re really making progress and your doctors will probably be able to give you a timeline of when you’ll be able to go home!

Once out of the hospital, some people do need to go to a transitional housing for physical and occupational therapy before going home, and some are released home.

Some people who live further than a certain radius from their hospital are required to stay within a distance of say, 15 miles from the hospital for the first 90 days so that they can quickly return if there’s complications.  The first 90 days are critical as there are a lot of checkups that need to be made, and appointments can be suddenly added on.