Help HOPE Live for Elizabeth Cummings
On November 18, 2025, I was listed on the UNOS (United Network for Organ Sharing) active lung transplant list. I could get “the call” anytime.
I enjoy being able to still be working part-time at a local school district, nearly 25 years. I have had the pleasure of working with many caring and supportive colleagues, friends, family and people throughout my lifetime. I enjoy living in Southern Maine and happy to be sharing my life with my husband, two lovely bonus daughters, family and friends. And of course, Pierre, our perfectly lovable and energetic standard poodle.
I am being treated at Massachusetts General Brigham in Boston, MA. I am raising money to help pay for uninsured medical expenses associated with a double-lung transplant and lifelong immunosuppressants while trying to live a productive life and managing a life-stealing disease – Cystic Fibrosis.
While there are several genetic modifiers available for people with CF, i.e. Kalydeco, Symdeko, Alyftrek, among others and the infamous Trikafta. Trikafta has helped thousands of CF patients with the most common genetic mutation. They are not having to be hospitalized like before Trikafta; their lung capacity improves. There are many patients that have a not-so-popular genetic mutation and no genetic modifier. I am in this mix of CF patients who are not in the “most common mutation” basket, with my two cousins.
My lungs continue to deteriorate and architecturally restructure. I still have to be hospitalized when I get sick. After several days of inpatient, I am able to go home and finish infusing the i.v. antibiotics for the next several to ten days; it could be longer depending on bacteria resistance. I was sick five times in 2025. Each time I get sick, and my lung function goes into the 20s; luckily after treatment I’m back in the 30s. I remember being inpatient and the first time that my absolute best lung function test was 28%, tears poured out of my eyes without warning. It was hard to shut them off. I usually try and schedule my release of emotions for later; when I’m driving in the car or in the shower.
With each inpatient experience, I am getting more desperate; I feel sadness sweep over my body. I thank my body every day for working so hard for me and for so long. But my body is getting tired and drained. I have lived my entire life, not wanting to LOOK sick. I never want people to look at me with pity or like I’m less of a person. One of the hardest days, weeks of my life, was the very first time that I had to strap on a portable oxygen concentrator and went out into the world. EVERYONE will know I am sick; EVERYONE will see that I’m sick; including me. I wore a mask so that no one could see my tears. I have adjusted to needing & using 02. My body needs it, I use it with my head held high. It would not make sense to let my entire body fight for air. I have had experienced unrelentless coughing, from pulmonary spasms where I cannot inhale without making terrible struggling sounds. My body is desperately fighting for and taking air from wherever it can get it. I have experienced my right arm and fingers shaking uncontrollably, my head feeling like it’s splitting in half, low back spasms kick in and the desperate feeling of suffocation. Sweat runs down the back of neck & face. During all of this I try to force in albuterol nebulizer treatments to calm my lungs. When the relief kicks in, I need about 20 minutes or so to do nothing but sit resting, then I pull myself together and continue on.
It did something to me when I read in my file that my classification changed from advanced lung disease to end-of-life lung disease. I guess that’s how you get to slide over to active transplant list. People who have known me for a a long time, chuckle when I say that I am a delicate flower because I do have a not-so-delicate side. I had to be guarded and tough the first 18 years of my life. “Fixing” those years has been a lifelong journey; quietly, I really am a delicate flower. I am asking for a second chance, everyone’s life is filled with second chances. I am asking for a second chance to breathe, bloom and be better than ever.
In a world that is changing so rapidly, I appreciate you choosing to care about my second chance. Thank you for supporting me; no gift is too small.
-Elizabeth
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Elizabeth has chosen to fundraise with HelpHOPELive in part because HelpHOPELive provides both tax-deductibility and fiscal accountability to her contributors. Contributors can be sure that funds contributed will be used only to pay or reimburse medically-related expenses.
To make a contribution to Elizabeth’s fundraising campaign:
Make checks payable to: HelpHOPELive
Note in memo section: In Honor of Elizabeth Cummings
Mail to: HelpHOPELive
Two Radnor Corporate Center
100 Matsonford Road, Suite 100
Radnor, PA 19087
For credit card contributions: click the “Donate Now” button.
For more information, please contact HelpHOPELive at 800-642-8399.
Thank you for your support!
