Susan Vanlandingham

Dear Family and Friends,                                          March, 2024

Yet another year has passed, and I’m now 26 years old. I still work remotely as a Proposal Coordinator for Akima, and my husband, Zeb, and I still live in Chesapeake. We have found a great church and attend a weekly study for young married couples. Finding a godly community of couples our age has been so valuable to our faith and wonderful for building new friendships.

In December, we lost Grandmama, my dad’s mom. She was my last living grandparent and losing her was very hard. Not being able to go down the street to visit her has been a big change. On a happier note, we are thankful for some new family additions. Zeb’s brother’s wife recently had a baby girl, Sophia, and my sister is expecting another girl to join Remi in a few months, so we are abundant in nieces (no nephews in sight). 

My mom said not to write a whole paragraph on the cat, but I can’t help it. Last March, we impulsively adopted a two-year-old black cat who had been overlooked for more than a year in a shelter. To say we are obsessed with him is an understatement. He is the most affectionate little companion. He loves to be held like a baby, and I have taught him several tricks like meowing, spinning, and high-fiving on command. He can even jump through a hoop in the air! His name is Toothless, but don’t worry, he has all of his teeth. He’s named after the main dragon in the How to Train Your Dragon series because he looks and acts just like the dragon.

Overall, my health is stable. I continue to do daily treatments, take many medications, and attend frequent doctor’s appointments. Last May, I discovered I have low bone density, falling in the range of osteopenia. I subsequently added daily calcium pills to my already monstrous medication list. I didn’t know until recently that CF patients are at higher risk for developing this and numerous other health conditions. Because of this, and due to some unusual symptoms I’ve been experiencing, I have seen several specialists and completed many medical tests in the past year. So far, I don’t have answers for some of my symptoms, but I continue to push forward.

In November, I decided to have my mediport removed. This decision was significant. It allowed me to reclaim a little chunk of the time that CF steals from my life. Since my port was implanted over 15 years ago, I have consistently had it flushed every five weeks by a home health nurse. Due to the benefits of my newer medicine, Trikafta, I haven’t needed IV antibiotics in a few years, and this cemented my choice to remove it. Unfortunately, the surgery wasn’t entirely successful. My blood pressure read low in pre-op, making the surgeon nervous to give me anesthesia, so I was fully awake the whole surgery. The port was cut out of my lower chest, but its connected catheter wouldn’t budge. The surgeon tugged and tugged at the catheter as I cringed, and pieces of it broke off the end. After 10 minutes, they made the decision to leave it in. This was unexpected, disheartening, and just plain annoying. I had a second surgery in December in which they made an incision by my collarbone and successfully pulled the catheter up and out. I wasn’t excited to have two surgical scars, but I’ve completely healed and am glad that’s behind me.

I want to thank you from the bottom of my heart for all of your contributions and well wishes last year. My family and I are more grateful than we can put into words. In 2023, Team Rachel’s Hope raised $21,330! These funds make a considerable, tangible difference to those living with CF. Without your support and the advancements made by the CF Foundation, I would still be getting port flushes and would likely still be on IV antibiotics a couple times a year. Thank you for making these changes possible for me!

Our annual Great Strides walk will be held at the Dismal Swamp Canal Trail in Chesapeake on April 27th this year. Check-in time is 9:00AM, and the walk starts at 10:00AM. We would love for you to join us! Whether you can or cannot, please consider making a tax-deductible contribution payable to the Cystic Fibrosis Foundation. You can donate to our team online at http://fightcf.cff.org/goto/TeamRachelsHope (Also, some employers have a matching program and will match your donation if you ask.)

My family and I yearn for a cure. Until then, we will continue to fight. We are so blessed to have you, our team, by our side. Once more, thank you, and God bless!

With Love and Gratitude,