My Lung Transplant Evaluation Was a Roller Coaster Ride of Emotions
In May 2017, I began the roller coaster ride that was my lung transplant evaluation. I call it this because it had the usual climbs of positive developments, and the fast and dramatic drops. But it also had terrifying twists and turns, and unexpected events, which left me frustrated throughout the process.
Determining the need for evaluation
I started to have a chronic wet cough, which is unusual because a dry cough is usually associated with idiopathic pulmonary fibrosis (IPF). The cough was new, and it was so loud and demanding I thought I was dying.
Eventually, doctors determined that I was in atrial fibrillation, which is an irregular heart rhythm, and fluid had formed in my lungs. As a result, my lung capacity dropped from 63% to 51% in July of that year. A 10% drop in lung capacity is considered significant and indicates a need for a transplant evaluation.
Besides my lungs, I was concerned about my kidneys. Before my evaluation, I saw my nephrologist about possible kidney disease. He indicated that my kidneys shouldn’t stop me from having a lung transplant.
Initial assessment
In August 2017, I started my transplant assessment. I completed the initial tests, except cardiac catheterization, before my next appointment, when a transplant pulmonologist would tell me if the evaluation would continue or if I would be rejected.
My clinic visit was the first 180-degree turn on my roller coaster ride. The pulmonologist didn’t discuss my tests. All he wanted to talk about were my possible kidney issues. He said I couldn’t complete the cardiac catheterization because of the high risk of being placed on kidney dialysis.
However, the pulmonologist couldn’t reject me for a transplant, because I was in the middle of a 24-hour urine creatinine clearance test, which would indicate the stage of my kidney disease and my ability to have a transplant.
When the pulmonologist ignored questions from my wife and my daughter, we were perplexed, angry, depressed, and emotional about the unexpected outcome of the appointment. We headed home and waited for the test results. Two days later, I received my creatinine clearance results, which were normal. This was great news, and I would return in a year for further evaluation. Over the next two years, I had checkups and continued to be a candidate for a transplant.
Final evaluation
By May 2020, my lung capacity had decreased by 10% again. So, I had my annual visit moved up to the end of May. At this appointment, a transplant pulmonologist recommended that I complete the final tests for transplant if I needed to be listed in the future.
On June 30, I saw a transplant pulmonologist and completed my cardiac catheterization. I believed that the pulmonologist would tell me to come back in three months. But the roller coaster had different plans, sending me barreling downward and into a frightening loop.
During the visit, the pulmonologist said it was time for me to be listed for new lungs. Although it was the result I had wanted, it still took me by surprise. My case manager had all the consent forms for the surgery and the three bronchoscopies. She said I could sign them now or wait and fax them later. After getting over the shock, I quickly decided to have the transplant and signed the consent forms. My post-transplant IPF progression analysis supported being placed on the list immediately.
The next day, I passed my cardiac catheterization procedure and believed I had completed all of the necessary tests. But, once again, the roller coaster took another twist. On July 7, I found out I needed more tests. So, I had to wait another three weeks.
On Aug. 3, I had a consultation with a transplant surgeon. It was incredibly detailed regarding the risks of transplant, which was was intimidating. I was excited that my testing was complete. But late in the day, another test was scheduled for Tuesday. When would the required testing end and the roller coaster ride stop?
The ride continued at my clinical appointment, where I expected to discuss my lung allocation score (LAS) and be listed. But the roller coaster headed into a double loop when the pulmonologist talked about why I shouldn’t have the transplant. It seemed like the pulmonologist was planning my funeral.
I maintained my original decision. Finally, I received my estimated LAS, which was 45.6, which placed me in the top 15% of the list. I was listed on Aug. 7.
A friend and I went through the process at the same time and had similar experiences. Going through the transplant process, we don’t know what will happen, so expect the unexpected. However, keep up a positive attitude, because there is a light at the end of the ride.
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
Comments
David A. Maddox
I originally was diagnosed with IPF in 2017 and went on Esbriet to slow the progression. Progression slowed but three years later I was placed on the list to receive a lung transplant. Many tests along the way plus insertion of a cardiac stent into one vessel. Then it began a wait to move up the list, i.e. until my lungs became even worse. I was one of the lucky ones and it has now been one year since I received my new lungs and a chance for life. I've said many prayers for the family that followed through on their loved one's wishes fo be an organ donor if the time ever came. That must have been incredibly difficult. So much for which to be grateful as my first Thanksgiving in this first year post transplant approaches..
Kevin Olson
David, Thank You for reading my column. Very happy you received new lungs and doing well. I am humbled and grateful for my donor also. I was diagnosed in 2014 and started Esbriet in Dec 2014. Prayers for you to continue to be healthy. Prayers for your donor and mine.
Kevin
Herbert Carnell
Kevin, I would agree with you regarding the amount of testing required to be placed on the lung transplant list. I was diagnosed with IPF in 2018 and placed of OFEV in 2019. My PFT(pulmonary function test) testing began to show a decline in my lung capacity. Kevin, I would agree the discussion with the transplant surgeon was intimidating. Explaining the procedure for pre and post transplant surgery. With trepidation after discussions with my pulmonologist and the transplant doctor I decided to begin the testing for the lung transplant in March 2021. Due to my age (72) it was not certain that I would be approved for a transplant.
The testing was intense and non stop and with each test results I held my breath hoping for a positive outcome. After the testing my transplant doctor stated for my age I was in excellent health but needed one more test to finally be considered for the transplant. BOOM! The final test was a endoscopy and it reveled an infection was discovered in my esophagus due to the steroid inhalers I was using. I could not be placed on the transplant list until the infection was cleared. I was placed on a round of antibiotics and fortunately the infection was cleared.
On October 11, 2021 the transplant consent forms were signed and was finally placed on the lung transplant list for a single (left) lung transplant. The left lung was operating 24% capacity and the right lung about 80% capacity. My LAS score(Lung Allocation Score) was 35.2. The single verses a double transplant was explained as having a better out come for someone at my age and recovery will be less stressful on my body.
So now it's just a waiting game. Based on my LAS score my transplant doctor indicated it could be anywhere between 4-6 months or as little as 3 weeks before a suitable lung becomes available. So I'm just staying positive and ready for a call from the transplant institute at any time.
David, I'm happy that you have received your lungs and it's been a year for you. I do acknowledge that in order for me to receive a lung it will be at the sacrifice of someone's family loss.
Kevin Olson
Herbert. Thank You for sharing your story. I am praying for you to get your call soon. I know it is hard to wait. I had a friend placed on the list a month before me, but I received my new lungs before her. She received hers almost two months after me.
Stay positive, and I pray for a quick and good recovery.
Kevin Olson
Mary Geissler
Kevin, thank you for this article. But I am trying to figure out if you ever got the transplant or not? I am now in the very early stages of PF and began much the same way as you. I am doing very well since my rehab classes have enhanced my ability to work hard and do more exercises than ever. I feel stronger than I have in months, and have been in contact with a nearby major medical center for second opinion. I am going there as soon as they have an opening with the idea that I want to be on the list for one lung, not two, as I am 73 and in excellent health otherwise, but my age prevents a double. I have heard medical personnel say that people wait too long before getting on a list - often until there are no other options for them and so the quality and length of survival is often impacted negatively. I surely wish you well and could identify with the scary part where they tell you all the negative possibilities. I want to read up and know them so they don't catch me off guard and afraid at an appointment! Mary
Kevin Olson
Good Day, Mary.
Thank you so much for being so interested in my column. Yes, I had my double lung transplant on August 14, 2020. I have recovered very well.
You are doing all the correct actions towards getting a transplant.
If you have not seen my other columns about my transplant, go to this link to read them. They will give some insight into what I experienced. http://pulmonaryfibrosisnews.com/riding-the-ipf-roller-coaster-kevin-olson/
I wish you well and pray for you to receive a transplant.
Kevin Olson
Craig
I am a 73 year old man and was diagnosed with IPF 02/2012 otherwise I am in good health. How old of a person can be considered for a lung transplant.
Kevin Olson
Craig, Thank you for reading my column. Each transplant center has its own set of criteria for transplant age. I have friends who were in their 70s that had transplants. Any transplant after 75 is very dependent on the person's health and physical activity. When I was diagnosed in 2014, the age cutoff was generally 65. Suggest you talk with your pulmonologist about having a transplant and where you might be qualified.
Kevin Olson