(Letter from Rachel)

Dear Friends & Family,
 

Happy 2025! I cannot believe I am already writing our yearly letter again. Zeb and I are still in Chesapeake, and I still work from home as a ProposalCoordinator for Akima. We now have a second cat, Freya, who is as mischievous as they come, but also very sweet. We remain active in our young married couples church group and plan to take classes next month to officially become members of the church.

In October, Zeb and I took our first trip abroad since being together (his first ever). We spent two weeks in Italy exploring the Amalfi Coast, the island of Capri, and Rome. It was AMAZING! The two pictures included on this page are from our trip. I would go back in a heartbeat. The food was so delicious and fresh that it inspired us to buy four large, metal garden boxes and plant a variety of herbs and vegetables. We are starting to see sprouts of arugula, lettuce, broccoli, garlic, and shallots come up and are hoping to see other sprouts soon. Zeb is living out his farming dreams. Overall, life is awesome!

After reading the last paragraph, it might be hard for you to imagine anything is wrong. Unfortunately, this past year was one of the worst for my health in recent memory. Early in 2024, I experienced many new health symptoms and felt truly awful much of each day. I saw numerous specialists and had tons of testing completed. It was clear that both CF and something else were affecting me. Now, a year later, I am awaiting an appt. with a new specialist, but tilt table testing I’ve done indicates I likely have Postural Orthostatic Tachycardia Syndrome (POTS). POTS is an abnormal response of the autonomic nervous system, meaning my body struggles to regulate my heart rate and blood pressure and both can drastically change just in moving from standing to sitting or vice versa. In addition to the symptoms likely attributable to POTS, my CF symptoms increased last year to the point that I was hospitalized for the first time in over five years.

In June, after feeling like my lungs were declining without reason for a few months, I started coughing up blood. This was so disheartening as I had not done so since prior to starting the ‘miracle drug’, Trikafta, in 2019. I spent six days in the hospital on two IV antibiotics and then continued the IV antibiotics for two weeks at home. You may remember that I had my mediport removed at the end of 2023 after having it implanted for 15 years. I felt incredibly frustrated that I finally had it removed only to need it again after not using it for over five years. Instead, I had to get a temporary PICC line placed.

Recently, I was hospitalized again. I’m unsure if this year’s flu strain is stronger than in previous years, but it certainly knocked me down. Following a few days of high fever, chills, and a terrible cough, one afternoon I could not resolve a coughing fit. I was expelling endless mucus and gasping for air. I finally went to the ER after an hour of being unable to catch my breath. My flu had developed into viral pneumonia leading to a CF exacerbation. Fortunately this time, I did IV antibiotics while in the hospital but was able to go home on an oral antibiotic and an oral steroid. It has been a few weeks, but I have some residual pain and increased mucus presence in both lungs. As always, I do twice daily treatments from home and take many medications to try to alleviate these issues. Of course, however, there is still no cure for CF.

This year, our Great Strides walk is Saturday, April 26th at 17th Street Park in Virginia Beach, with check-in at 9:00AM. We would love to see a large presence for Team Rachel’s Hope and HOPE you will consider joining us. To sign up as a walker or to sponsor our team, go to fundraise.cff.org/HamptonRoads2025/TeamRachelsHope. Whether you attend or not, those of you who donate are just as important to our cause. We CANNOT fight this fight without you. Any amount helps! Donations are tax-deductible. Please make checks payable to the Cystic Fibrosis Foundation with “Team Rachel’s Hope” in the memo. Also, please ask if your employer will match your contribution.
 

Last year, we raised $21,813. WOW! Thank you all so much for your generosity and support. My family and I are more thankful than we could ever express. May God bless you and your families, and let’s go find a cure!
 

With Love and Gratitude,
 

Rachel Hope VanLandingham Morris