A Call to Action for Unlisted Pre-transplant Patients
Last week, we celebrated the one-year anniversary of my mom, Holly, getting on the lung transplant list. If you’ve been a reader of mine for a while, you know that getting on the list was not a smooth process for us. She was pretty healthy, and her IPF was stable just one month before her doctors arranged a midnight medevac flight to the University of California, San Francisco (UCSF) Medical Center.
A chain of events, beginning with appendicitis, led to a sudden and serious exacerbation of her IPF. For almost four weeks, the incredible medical staff at UCSF worked to recover her baseline health and check all the boxes needed to get on the transplant list.
Those weeks were full of minute-to-minute changes, constant care, and a seemingly endless barrage of tests. It was terrifying and exhausting. It was frustrating to see how brilliant and thorough every doctor on the transplant team was — and to have them say “not yet” to us every day. It’s hard to accept that answer when life is on the line and you know that they are doing everything right.
While everything worked out as well as it could have, I do wish that she had been on the list before she got to the intensive care unit (ICU). Since there are so many factors that go into matching a donor with a recipient, it might not have made a difference as far as her transplant date. But it would have been less stressful than wondering whether she would ever be on the list.
There was much that needed to be done to get my mom on the list from the ICU, but it was not because she had procrastinated. My mom started ticking the boxes as soon as she decided that she wanted to pursue a transplant. She started tracking down medical and vaccination records and performing all of the tests needed to assess physical health, physiological age, and psychological health. She made appointments for everything as soon as she could. Many of those appointments were not available until the end of January, which we now know was too long to wait.
When we were discussing this topic, my mom wanted to encourage everyone who is considering a lung transplant to be proactive about getting through the to-do list as soon as you can. Do not let the future paralyze you.
Needing a lung transplant is a huge deal. But if it is your only option, why wait one more second to work toward it? It is life or death, and being too scared or upset about your situation to take action can have dire consequences. Take it seriously and act now. Pulmonary fibrosis is an unpredictable disease that can worsen suddenly. I have seen it happen.
Push through the discomfort and fight for your health. Find those records. Schedule that colonoscopy. If you want the chance to extend your life with a lung transplant, you wouldn’t want to miss it because you were frozen by the fear of needing one.
It is worth it to fight hard because even if you are on the ball, the medical field might not be in such a hurry. Doctors might be booked for months. Or your insurance might bounce referrals or deny tests. A busy schedule or a hang-up behind the scenes could have major repercussions. Trust me when I say that having all the tests done in the ICU is not an easy way to go about it. It is hard to endure as a patient, and it’s hard to watch a loved one have tests repeated over and over.
I wouldn’t wish upon anyone the uncertainty we felt as the team at UCSF tried to get my mom on the list. The 23 days spent in the ICU not knowing whether she would qualify felt like an eternity. My plea to you, pre-transplant IPF patients, is to get on it and do not let up. If your doctor is booked for two months, call every day and ask if there have been canceled appointments. Delegate whatever else you have going on in your life and make it your full-time job to get on the list.
I don’t care if you “don’t feel ready.” When the time comes, you’ll be happier to be scared to death and on the list than facing your mortality with boxes left to check. I promise that you will find the strength to deal with things as they come. There are so many people to support you when it seems insurmountable. We are all around you!
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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.