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!
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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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Bob
I couldn't agree more. I was recommended to MGH by my pulmonologist for lung transplantation testing in 2017. I must admit I didn't feel too bad back then but the progression was setting in. I did all the testing and it was determined by the "team" that I was "too stable" to be listed. I had 6 month reviews going forward and I kept going downhill. Finally, this past May, the team leader thought that because of my age (72) at the time that if they were going to transplant me that the window was closing. He was concerned a bit about an occlusion in my heart just beyond a 5 year old stent so he ordered a stress test which showed no problem and he scheduled my November review. At that review it was determined that I repeat testing in order to get listed. Next
Friday I take my last scheduled test (cardiac catheterization). If, as my cardiologist suspects, there are no problems, they will have the team meeting and I believe that I will be listed. It will be 90 days+/- since I began testing and I am doing OK. I will definitely accept my new lungs with joy and try and keep the ball rolling. I have a friend who when he was medi vact to MGH he was circling the drain and just barley made it into the OR. That was 3 years ago. He is 77 now and serves as my power of example. The best of luck to your mother who I am sure must be or least beginning to enjoy life a lot more since receiving her "gift"!
Christie Patient
Hi Bob,
Thank you for reaching out in comments. As you and others have mentioned, the window to get on the list only starts when you are truly sick enough to need it, and lasts only so long as you are healthy enough to receive lungs. I am glad that your disease has progressed slowly, giving you the time to understand what needs to be done--and that you have an ally and role model to inspire you to take action. You are taking the steps now, and you will benefit from that later! I hope that your heart cath goes well on Friday!
Christie
Suzanne Brennan
I hear what you are saying about not waiting until it's almost - or too - late but if your numbers have been relatively stable, some transplant places won't allow you to start the testing. After my initial diagnosis in Jan 2016, I was referred to a transplant hospital here is Colorado. They saw me every six months for two years and then said I was "too healthy" to continue coming and way too healthy to start transplant testing. While I am very glad to be stable and, yes, healthy, I still have IPF and may end up facing what your Mom faced if I have an acute exacerbation. I continue to have all the medical test/issues addressed (recently had a colonoscopy and a mammogram for example) as they are recommended but it's also important to note that even if you have the testing done, they told me that results have to be one year or less old or you have to redo the testing.
Christie Patient
Hi Suzanne,
Yes you make a good point about transplant teams waiting for certain conditions to exist to get you on the list. There is a sweet spot between being sick enough to definitively need a transplant and healthy enough to receive one and thrive afterward. My perspective comes from my mom having an extremely short window between her diagnosis and her decline. I realize that this is not the case for most IPF patients, and should have mentioned that in my post. I am happy to hear that you are "too healthy" to try to list for transplant yet, but also are staying on top of testing. It is so important to keep those things up to date, as you mentioned, in case things take a sudden turn, as in my mom's case. Thanks for reaching out and broadening this conversation beyond my narrow scope. I wish you continued health in this new year.
Christie
Holly W Patient
This is Holly, Christie's mom. I haven't commented on her column before, but wanted to say to Bob and Suzanne: I think you both make excellent points. As we heard more than once , the window for "listing" and transplant is when you're sick enough to need it and healthy enough to survive it. For me, that window was extremely narrow; for others, it can be long and drawn- out. And, it seems that progression of IPF can take many forms. From my definitive diagnosis to being in respiratory failure was only five months. I would say, once your medical team gives you the go-ahead to begin preparing for transplant-- do it! I was so scared that I was tempted to put my hands over my ears and go "la la la la la" when the words "lung transplant " were uttered. Did I ever change my tune when I was faced with imminent "end of life, " as they put it. And, by the way, the transplant process wasn't nearly as tough as I'd expected!
Christie Patient
Well hello there :) Thanks for adding to this discussion from your perspective! I hope that others have an easier go about it than we did, but I hope this post and your comment can help motivate others who might find themselves in your position.
C