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Rachelle Needs Your Help

My wife, Rachelle Ledbetter, has been suffering from pulmonary problems since she was a child. Eight years ago, she was diagnosed with severe Bronchiectasis. Her doctors have told us that her only option now is a life-saving lung transplant.

Updates (32)

January 15, 2020

The decline is subtle. The progression expected. Yet I’m still thrown off guard and quite emotional when my pulmonary function tests showed significantly diminished lung function than previous ones.. During my quarterly appointment last week with my lung transplant team at UCSF, my breathing tests showed how much air I’m taking in as well as breathing out,; a six minute walk test where I walk as far as I can up and down a very aesthetically unattractive hallway, no ocean waves here! I knew I was toast when, during my first test to measure lung capacity, I was unable to stay off my oxygen for fifteen minutes breathing room air. I had been successful before, quite a number of times. Not so today (1/8). Room air for six minutes and I was gasping for air, as my O2 stats were plummeting to 80%. Additionally, during my walk, I had to pause and rest three times. This was not my old normal. Halfway through the walk, I wanted to collapse and cry. Willfully, prayerfully I completed the walk, digesting the meaning of my ‘F’s’ on these tests. Alan, my walking companion, expressed such encouragement and empathy, all the time I wanted to pummel him for making me do this.
After testing, I spoke with the pulmonologist (one of ten on my team) and had a lecture from Kerry, my lung transplant coordinator, about improving my communication with her when anything was just a wee bit off. Something I hadn’t been doing so well ie, a slight fever, a change in congestion, a near fall, dizziness, increased brain fog. Every change is critical as the team continues to assess my LAS (Lung Allocation Scores). My score had been lingering at 35-37, where about 75% of the 37 O blood types needing a double lung transplant are wait listed.
So Kerry and doctor outlined the new regimen: 1-call, call, call at the first sign of change; return to pulmonary rehab; exercise daily to stay strong (ugh); increase mucous clearance with vest and hypertonic solution twice daily; keep a blood pressure log – my typically low blood pressure is reading high, particularly when I’m out and about, or get overly anxious; use more O2 as needed which means while sedentary, 5-6 liters (up from 4), walking 6-8 liters (8 is a new high).
What do these changes mean? My LAS score is now 37.7, just .5 higher than my previous, stuck in the pack with 75% of the patients, score. Though it sounds so minuscule, it has broken me out of the cluster to move forward on the list, in the top eight if my calculations are correct.
So I’m freaked!! After waiting for over three years and becoming comfortable in a ‘new normal’, transplant is looking like it’s really happening. Life is dramatically changing once again and I’m frightened. My early preparedness needs to be reworked. Bags repacked, projects complete at home, summer relocation accelerated. It’s more than I can handle in the grand scope. Breathe… day, one project at a time. Blessed with family and friends that are more than willing to help in any way possible, I’m not alone. Plus, I have My Abba, who has my back, guiding me, holding me, breathing strength into me when I have none of my own. I keep a vision of my family and I walking on the beach, unencumbered with oxygen tanks, hoses, backup tanks. The fear of running out of oxygen gone. What a celebration we will have! #justbreathe #waitingfornewlungs #gratitude #nomoreO2equipment #Godhasthis

May 19, 2019

June 1st, 2019- the date of my temporary medical relocation until November; 160 miles west from my family and beloved community of 33 years. My traveling companion? Sadie, comfort dog extraordinaire. Independent living for the first time in years. Amazingly, I’m strong enough to do this, as opposed to last year when I was forced to relocate due to heavy smoke from fires, the worst air pollution in the nation, and temperatures consistently above 100 degrees. I couldn’t be left alone during August and September until the fresh air of the central coast started permeating every ounce of my body, allowing me to breathe more comfortably than I had in years.
Since that 4 1/2 month healing retreat, I haven’t been hospitalized once since June 2018. A YEAR! The ER at Kaweah Delta has missed me as I use to visit every other month or so.
This summer I vow to gain further strength as I rent a cottage in Cayucos, through October, possibly November BEFORE I can’t breathe. However, rentals at the coast are out of our humble government retirement income. $2500/month + utilities! For a studio no less. Ouch! But as my lung transplant team affirms-it’s life or no life! There is no either/or.
This is why we desperately need your help. In addition to mounting medical bills of a 2 1/2 year (and counting) wait for a transplant, I now require $13,000 minimum for temporary housing. This is where you come in. Please consider a donation to my HelpHopeLive campaign so I can breathe easier this summer. You are such a blessing I am full of gratitude and love for your continued support.

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June 7, 2019

We love you Rachelle! Happy birthday!!!! Here’s to many more, breathing with ease

Kathleen Seligman

March 13, 2017

We'll be thinking of you and praying for you each and every day. Keep the faith!

Jim and Peggy Entz

March 11, 2017

Rachelle, we are here for you! My heart is glad to help you. Your friends from Lemon Cove.

Teri and Ralph Blaser

January 14, 2017

One of my favorite sounds is to hear your unique laughter (however subtle) in the back during church. You are distinct, transparent and so endearing to my family and to our church family. You have encouraged our growth with your childlike fervor to grow in your faith. Our hearts are full with love and hope for your healthy future.

Robin Castro

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