My Miraculous Double-Lung Transplant Journey
How Can I Say Thanks? — A Brief Summary
Imagine sailing through life for 68 years — the picture of good health — without any major illness, disease or hospital visit. That was me until Covid hit me in January 2021.
What seemed like a bad case of the flu morphed into a degenerative lung disease known as Pulmonary Fibrosis within months, with an average life expectancy of 2–4 years.
I went from swimming 500 meters every other day to requiring oxygen with any exertion at all, including a short walk to the mailbox. From an active lifestyle to a couch potato.
After various consultations with pulmonary specialists in CA, AZ and FL, it became clear that my best and only long-term option was a double-lung transplant.
In the summer of 2021, I decided to move from Phoenix, AZ to Sarasota FL to be near one of my four grown daughters and a grown granddaughter to plan my treatment options.
Upon finding a local pulmonologist he promptly referred me to Tampa General Hospital (TGH) as the closest hospital with the best reputation for transplant success (90+%), and alternatively to Mayo Clinic in Jacksonville, FL, which is a four-hour drive.
Due the huge influx of Covid patients in the Fall of 2021 flooding TGH, I decided to begin the pre-approval process at Mayo Clinic.
I was amazed at the Mayo’s ultra modern campus and hospital interior, but even more surprised by the patient-centered culture which pervaded the entire Mayo team. My visit even inspired me to write a humble song: The Mayo Royal Treatment.
From the moment I arrived I felt like I was in good hands and could trust the outcome. I was there for two full weeks of various exams and consultations to determine if I was healthy enough for a double lung transplant.
Surprisingly I discovered that you must be without any other major health issues to qualify for a transplant, and then get on the national UNOS transplant list.
After all of the testing was complete I got the OK within weeks to be put on the Mayo transplant list, but then discovered I would have to move to Jacksonville for a minimum of 3–4 months post surgery.
This fact led me to circle back to TGH to see if they would accept the Mayo testing results. Thankfully they did, and with just a few more tests I was finally approved for the TGH transplant list on May 12, 2022. My number was 41 on a list of 0 to 100, which means 59% were in more urgent need than I. I was told it could be weeks, months, or over a year.
Miracle #1: Within just four days I received a call from TGH at 10pm requesting that I come immediately to the hospital — because they have found a set of lungs for me! Whoa, I thought, as the reality and immediacy of this major life-changing experience suddenly hit me like a freight train.
“Be here within two hours with your caregiver,” said the transplant coordination on the phone. So I promptly called my daughter, grabbed a few essentials and the journey began.
Upon arrival I was wheeled into the TGH Emergency Room to begin a several hour prep for the O. R. Once I hit the operating room and they hooked up the anesthesia I was quickly swept off into dreamland as my daughter and granddaughter quietly said a prayer.
Miracle #2: I was later told by my amazing TGH pulmonary surgeon (Dr. K) of the heroic nature of my surgery. The normal time for this procedure averages 6–8 hours, but in my case it lasted a total of 18 hours!
The surgery lasted 12 hours initially, then another 6 hours for an urgent blood transfusion after I flat-lined for over two minutes! This required reopening the clam shell incision — which is basically the full width of the chest and requires sawing the rib-cage in two. (Ouch!)
How can you say thanks to a surgeon who saves your life? I remember asking him “Did I die?” when he later stopped by in ICU to check on me. His response was classic: “Not on MY watch!”. He later called my daughter at 3am to ease her worries and confirm that I was recovering nicely. That’s above and beyond the call of duty!
During the surgery I did notice a distinct change of consciousness, but did not sense any reason to be fearful. Although my life did not flash before my eyes, I did sense a euphoria, a feeling of perfect peace and safety, similar to reports from career bedside hospice nurses.
When I finally woke up hours later, my daughter and granddaughter were there in the recovery room smiling with tears of joy. I too was pleased that I had virtually no recollection of the O.R. drama.
Next, I had to get used to having a breathing tube for a few days, which meant no solid food or liquids, except ice chips or lip swabs to protect the fragile new lungs from fluids that could lead to pneumonia. This was the most challenging “intubation” phase with breathing, feeding and drainage tubes all over the place.
But thankfully, within 7–10 days I slowly began exercising my new heaven-sent lungs with persistent prodding by the transplant team I was back eating, drinking and on my feet within two weeks using a walker.
I was first released from the hospital after just 18 days, but within a 10 days I developed painful fluid around my new lungs and was readmitted for a series of six surgeries to insert drainage tubes and remove the fluid that would not drain surgically. No fun, but after another 18 days, I was sufficiently healthy to be released.
Since then I have had a few bouts of nausea, but on the whole, as I write this on day 84, I believe I am now out of the woods. My new daily regime includes dozens of medications that must be spaced out four times a day.
There are at lease two other miracles I have to share, but I will save those for the full book on this topic which I am presently working on.
Bottom line: All of the TGH doctors, nurses, techs and helpers that I encountered in my 36-day total stay, as well as the twice a week outpatient care team, has been outstandingly gracious, patient and cheerful which made the very best of a difficult situation.
From the very first nurse who greeted me after the transplant surgery with a bright smile and pink lung-shaped pillow written with her kind wishes and #728 on it… to the post-transplant team — Dr. P and Dr. Q — and their entire nursing staff , which I visit biweekly now.They all have provided me both the kindness as well as the tough love needed to move me forward in my recovery process with confidence that together we can do this.
That is the short version. Yes, each day I ask “How can I say thanks?” My first step has been to follow the Dr. orders to help insure these new lungs last 10 or 20 years or more.
The next step was to write an appreciation letter to the donor family expressing my gratefulness and hope to perhaps one day meet them. I also composed a simple song, “How can I say thanks?” expressing my thanks to all involved, and especially to my loving Creator, who has allowed me to extend my life due to the miracles of modern medicine.
Today wherever I go, I am now much more mindful of the high calling of healthcare professionals at every level and the ever growing need for more transplant donors, of which I have been for my entire adult life.
If you or a loved one are considering an organ transplant, I would say go for it! Whatever short term pain is well worth the long term gain of an improved quality and quantity of life for you and your family.