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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.
Rachelle is a strong woman of faith, loving wife, mother, aunt and good friend to many. She is always optimistic and the first to help when someone is in need. Unfortunately, breathing has become very difficult for her, she is dependent on oxygen 24/7 and is no longer able to do many things we all take for granted. She is vulnerable to even the slightest infection or cold, and has been hospitalized multiple times over the last few years. Once she receives the life-saving transplant, Rachelle looks forward to spending time with friends, family, attending Dodgers games,and becoming an active member of the community again.
The expenses related to a transplant are very high. Even with insurance there are many expenses that must be covered out of pocket. Some of these are co-pays, deductibles, travel to and from the transplant center, relocation at the time of transplant and Rachelle will be on a life-time of expensive anti-rejection medications. This is where we need your support.
To help with the financial burden of Rachelle’s uninsured expenses, a fundraising campaign in her honor has been established with Help Hope Live, a trusted nonprofit organization that has been providing community-based fundraising guidance to patients and their families for more than 30 years. All donations are tax deductible to the full extent allowed by law, are held by Help Hope Live in the Southwest Lung Transplant Fund, and are administered by Help Hope Live. To make a donation to this fundraising campaign, click on the Donate Now button.
On behalf of Rachelle and our family, thank you for your kindness, generosity, support and prayers. Please keep an eye on Rachelle’s campaign page at Help Hope Live because we will be planning some fundraising events soon and posting updates regularly.
May 1st- Month of Movement in celebration of my 2nd lungaversary. Morning workout with my Silver Fox team. I had a video but my lack of tech savvy made it jumpy and upside down. #doublelungtransplantwarrior #gratitudeformydonor #Ibelieveinmiracles #donatelife #motionislotion Help Hope Live
Bike ride at Bravo Lake: 6.65 miles 47 minutes
Silver Fox exercise: 50 minutes
I attended an exercise class (for the silver fox), this past week. My first exercise in years! Though I walk 10 miles a week, more was needed. Every time I’d turn to look to the side while driving, my neck was very unhappy. Or I’d sit on the ground amongst the spring wildflowers and I had no strength in my legs or knees to get up without a helping hand from my love, Steven. My spine would yell at me every morning upon getting out of bed.
I used Facebook to find a trainer, but options are minimal in our Three Rivers hood of 2500 residents. Ding! I remembered attempting the classes offered by the Senior League (I’m in total denial about the senior part), three times a week, pretransplant. Its aim? Strengthening, balance, movement.
I’m not a ‘get up early out of bed to take on the day’ kind of person. Chronic end stage lung disease has a way of establishing this pattern.
However, I’m almost one year post transplant. The mind said, Go!, so I went! And what a monumental change in one week! I have more energy, I’m more productive due to my earlier mornings, my knees are not yelling as much, the aches and pains of getting out of bed have decreased.
Yet another blessing as I continue to navigate this new life, with young lungs, breaking free of a self limiting mindset…..
On May 1, 2021, I found new life, when my young donor lost his in a tragic accident. Gratitude can’t begin to describe the overwhelming emotions I’ve been feeling every precious day since then.
Thank you all for your continued support and love. BELIEVE!
NOVEMBER 1, 2021- SIX MONTH LUNGAVERSARY! I’m still adjusting to life with lungs that are only 24-28 years young!
Kicking It In August- A Couple of Reflections
1- Pulmonary Rehab, twelve sessions, ended on Tuesday. I’ve informed the staff that I will show up every Tuesday and Thursday morning, begging to hit the treadmill running. They told me the door would be locked, and cut me loose. Rehab changed my new life! I shuffled in with my walker in July, barely able to stand up, dying after six minutes on the treadmill. On Tuesday, I left after 20 minutes of treadmill on incline 3, 15 minutes of the NuStep, and strength training/cool down for 15. I practically ran out, but not before thanking my pushy trainers profusely. My nickname is “Trouble”- I laugh, crack jokes, refuse to comply (ultimately caving in to their not-so-subtle urgings). I MUST keep up the daily routine as my healing depends on it.
2- The arts are alive in Beverly Hills! I have completed my goal of touring 16 upright pianos, artistically painted by 16 different artists. The month-long exhibits’ goal is to bring awareness to the public, then donate the pianos to local schools as an inspiration to young lives.
3-My overall recovery progress is very good. Personally, I’m still adjusting to a body that is different. My diaphragm is still very much inflamed (to be expected); my gastrointestinal system is all tweaked; my hair is falling out; I’m unable to find a bra to fit comfortably around the inflamed diaphragm; my eyes have deteriorated faster than usual; I’m constantly battling fatigue; I belch inappropriately; I bruise at the slightest touch on my arms (years of prednisone); foggy brain is very active (or not however one looks at it); I’ve fallen twice in one week due to dizziness, with the second fall resulting in a very swollen, and purple left hand. Just a few side effects of multiple, now lifetime anti rejection, anti bacterial, anti fungal drugs.
Even though the transplant has literally saved my life, of which I’m full of gratitude daily, I’m not cured by any means. I will live day by day, working at staying as healthy as possible, practicing life long mask-wearing, social distancing , semi hermit style isolation (I am, by nature, a gregarious, social being!)
4-I continue to be in awe of the transplant community that surrounds me, the knowingness of each other’s individual battles of post transplant living. I am forever grateful to Ava, Barbi and Ray Chuck and Sara, and of course , the love of my life, Steven.
5-So much gratitude and love to my medical team, and to my donor and his family. He, a young man 24-27 years of age, has given me hope; a chance to live a life that hadn’t seem possible four months ago.
6-The support, love, words of comfort, prayers and financial help from my community of friends and family across the country, my 3R village/friends, church family, and #HelpHopeLive team has been positively mind blowing!
7-Nothing would have been possible without complete trust and faith in my Abba, my Amazing God.
So, August has been a time of hard work, physical breakthroughs, and the realization that though I’m not cured, I can breathe on my own. It’s so worth the lifetime of drug side effects, knowing that new adventures await. Plus, I’ve been promised some grandkids so there’s no way I’m leaving this earth just yet. (ahem, daughters?!) #justbreathe #Godisgoodallthetime #newlungsnewadventures #lungtransplantsurvivor #graditude #HopeIs
CNN Heroes segment on Ava's Heart, the nonprofit organization that is housing us for three months post transplant. An incredible piece and I was blessed to be a part of it.
It’s been almost four months since my life giving double lung transplant and what a difference! So many emotions and sense of awe! I’m still in Los Ángeles recovering through September at Ava’s Place, which has truly been a gift! Steve and I won’t return to our home in Three Rivers until the first rain which may not be until December. In the meantime, we’ll be renting along the central coast until I’m able to breathe clean air. This is a lifetime journey as I adapt to my new “normal” of anti rejection meds, maintaining social distancing, masks at all times….trying to maintain a level of health with a nonexistent immune system.
Thank you all again for your outpouring of support. It takes a community for healing! Our expenses continue to exceed our insurance as well as additional ongoing relocation budget needs. Every donation helps!
Hello friends and family! Meaghan Skye here (eldest daughter). As most of you know from Facebook or other social media platforms, our prayers have been answered. Saturday May 1st, 2021, Rachelle received the bilateral lung transplant we have ALL been waiting for.
Since receiving this 5th and final call the morning of Friday 4/30, we have all be in an altered state. A true rollercoaster of emotions! It has been a chaotic few days to say the least, mostly due to the overlap with Steve and Rachelle's 'move date' to the coast and the 'move-in' date of three Sequoia National Park employees into our family home. So as Mom and Dad made their way to UCLA for the transplant, I headed to 3R to pack their 'summertime' belongings to go to LA, their 'wintertime' belongings into storage, and with the help of my sister, Sierra, her boyfriend, Skyler, and our cousin, Evan, we tried to sort it all out. I'm still wrapping up things here at the compound, and Sierra will swing by later today to pick up our parents' beloved four-leggeds, Sadie and Pinto. What can I say? Teamwork makes the dreamwork!!
And speaking of teamwork, you guys, WOW. You are the most awesome team there is! Texts, calls, prayer chains, aide in finding LA housing, and truly endless support-- the Swinney/Ledbetter family FEELS YOUR LOVE. Thank you, thank you, thank you.
As of today, May 3rd (Steve and Rachelle's 35th wedding anniversary!), things are going pretty darn well. Some of you may have already seen my posts of Mom, post-surgery. Yesterday they took her off the ventilator, and we are happy to report, she is breathing on her own! In typical Rachelle fashion, she may have gotten a tad too excited yesterday at her high o2 stats, so today she is feeling more tired and somewhat nauseous from her meds. But overall, she is in a really good place! Dad has barely left her side and the two of them are so happy to be spending this significant anniversary right where they are. We are all exceedingly grateful.
If you are feeling chartable after all this good news, please don't let my longwinded update get in your way! You have helped us in the past, but the fundraising is not over. There are many costs in this journey not covered by insurance such as housing in LA for the next few months as Rachelle recovers, food and fuel for all her caretakers (we will take turns!), and of course, the high cost of anti-rejection medication that will become her new normal. Every donation, however small, goes a long way! If you are unable to give at this time but would like to help out, feel free to share Rachelle's story to your community, and/or continue to hold her and her new lungs in your heart.
Lastly I'd like to say how eternally grateful we are to the donor and their family. We have hardly had the mental space to fully process what this all means, but we do not want to ignore the fact that such an enormous gift to our family comes in the wake of a great loss for another. Please take a moment to send some love and prayers to the family of the donor, in their time of great grief.
Please enjoy this video taken yesterday, shortly after Mom came off the ventilator. What she says is what we've all be praying for. "I'm breathing on my own."
Blessings and Love,
Meaghan, Sierra, Steve and our rockstar, Rachelle
Day 18: Operation Medical Relocation to the Coast
I can finally breathe again. I noticed the change after fourteen days in Morro Bay. When I arrived on July 1, I was in yet another compromised health condition. The final two weeks of June in the Central Valley had done me in with temperatures rising and the air deteriorating rapidly. The sure sign of increased breathlessness, not being able to move without my O2 stats plummeting; increased mucus production and greater fatigue. It was time for me to go coastal.
It was quite a roller coaster getting here with three potential rentals falling through for various reasons. Finally securing a July home on June 30th, it was time. Though my body wants to go into anxiety mode due to all the changes in plans, this process has cemented my trust in God, knowing that the perfect place is waiting at the right time, albeit the last minute in this case.
Steve and I drove separate cars and begin setting up camp at the cutest, funkiest 1940’s place that exuded a well loved family home on the bay. It was well suited for us!
Then the healing began. Steve has taken on the roll of task master- the one who makes me exercise. This is no easy feat as I can be very manipulative and convincing on why I can’t walk today. Determination was all over him however. With COPD, the lungs say “no thank you” to any form of movement, which is why it’s absolutely critical to get moving. It builds up lung capacity. And walk I did. At first, 2000 steps daily was my goal, 3000 by the end of the month. The first week was walk a few steps, stop. Walk a few more, stop. By the end of Week One, 2000 steps was the norm.
It was the second week when a huge shift occurred. Steve and I took a short drive to Cayucos Pier and something kicked in. Invigorated, ocean air filling my battered lungs, we reached the end of the pier with 6-8 stops. On the return, the Ledbetter drive kicked in and I took off leaving Steve and Sadie behind me. I was home. I was breathing. I was crying at the obvious turnaround in my lung capacity and energy level. This is why I come to the coast. To get a sense of life back, to be involved, to breathe, to be somewhat normal. Once again, I know I will be sticking around a bit longer.
My gratitude to all who have supported me on this journey: my three Rivers community, my anonymous Patron, the outpouring of prayers, love and financial gifts. I continue to be in absolute awe of the numerous blessings while going through the storm. My heart overflows. #gratitude #gonecoastal #justbreatheagain #oceanair
For the first time in ten years, in celebration of my birthday month, I went white water rafting!! When Meaghan Skye Swinney suggested the idea, I didn’t think twice-YES! Why not? Maybe because I have a large oxygen tank that must accompany me. What if I fell in? Or my tank ran out of O2. Or fell on the trail. Or.....
Our guide, Don, along with Meaghan and Steven, were on high alert, cautioning me when we approached the rapids, getting me safely in and out of a raft, and ensuring a good time for the birthday girl.
Though it’s the end of rafting season and the water is low, it was perfection. A beautiful day, clear water, excitement at ‘Tubers Revenge’, ‘Devil’s Eyeball’, ‘Golf Course rapid’, and ‘don’t hit that tree’, and the adrenaline rush of engaging in an outdoor adventure I may never had done while on the transplant list. I proved that disabilities don’t have to stop us from enjoying life.
On to the next celebration! #JustBreathe #mindblowing #gratitude #nevertakelifeforgranted
What a ‘dry run’ it’s been.....
A ‘dry run’ in transplant language is a practice run, yielding a ‘no go.’
I experienced my first dry run last Monday morning. After 3 1/2 years on the double lung transplant list at UCSF, the call came Sunday, 7 pm: “We may have a pair of lungs for you.” Detailing the possibilities of what may happen, in a very calm, unhurried voice, Heather, someone I’ve never met, asked if I wanted to accept. What may seem like a no brainer, during the COVID pandemic, it’s a valid question. One third of those listed for double lungs at UCSF, decided to go off the list temporarily when COVID exploded. After a longer than average wait for this unfathomable offer, it was a resounding Yes Please.
Steven and I were in the car within an hour, on our way to a huge unknown. By the grace of God, our daughters were with us when the call came, a rare occasion due to self isolation. After hearing the instructions that Heather gave us, Meaghan and Sierra jumped into preparation mode, as I was in shock and experiencing shortness of breath, more than usual. They packed my bag, ten oxygen tanks loaded into the car (each lasts about 1 1/2 hours), made coffee, and kept me calm.
On the road by 9 pm, we arrived in record time at the hospital center. As Steven dropped me off, we experienced an intensity of emotion reflected on our faces, in the lengthy embrace and parting kiss. We weren’t quite ready for this moment. Due to new restrictions resulting from the pandemic, I was going solo. Without my rock, my comforter, my beloved. He would either see me in two weeks after I left ICU, or possibly not at all if the surgery was unsuccessful. I wouldn’t have his hand to hold onto, and he was in a city with no family or support.
Upon admission, tests were done: X-ray, lots of blood work, and a COVID swab. A consultation with a doctor about various outcomes had me nodding my head in understanding at 3 am, sleep deprived but running on adrenaline. Dozing off shortly after with the expectation of surgery scheduled for 1 pm, I was awoken by a doctor apologetically telling me it wasn’t a match.
As this pronouncement sunk it, I wasn’t disappointed, but strangely at peace. So many thoughts and emotions swirling around in my foggy mind. Why was I experiencing this relief, having waited so long, gone through multiple hospitalizations, self isolating before it became universal, and basically years of feeling frail, sickly and imprisoned in a body that screamed for normality? Grateful? Why?
I realized our family needed this practice run. We’d become complacent in our long wait. For 2 1/2 years my suitcase had been packed and ready to go in five minutes when the ‘call’ came. Eventually, the wait was eternal, the suitcase emptied.
My carefully prepared list of people to contact had disappeared, as had the file with hotel/lodging information and ‘what to do pre and post transplant.’ Since the pandemic has affected the medical field greatly, a plan for Steven, in the two weeks following surgery had to be throughly re-vamped. And honestly, I needed to wrap my head around the gift of new lungs actually being a viable offer. My name had not fallen through the cracks; my high level of antigens just made me a difficult match. By accepting this first offer, I had shown a willingness to drive four hours in the middle of the night, during a pandemic that could result in death.
After an incredible hospital lunch chosen from a diverse menu with multiple vegetarian options, (Casa Kaweah, you need to up your game! ) my somewhat groggy but stalwart love of 34+ years, picked me up at the hospital curb, with a look of love and gratitude. Driving home, we had a planning session, ready to place new revisions to our outdated transplant instructions.
So now we wait....again....for the next offer of perfect lungs. It’ll happen. God’s perfect timing. In the meantime WOW!! The outpouring of love, calls, texts, prayers and financial support has been overwhelming! Our family is humbled. Your presence in our lives make this long journey palpable. Thank you from the bottom of our hearts. #stillwaitingfornewlungs #somedayperfectlungswillcome #itdoestakeavillage #justbreathe #Hisplannotmine
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.....one 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
MEDICAL RELOCATION FOR SUMMER
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.
#ICANBREATHE While Wildfires Surround Me
Every day this week I have received a notification about the air quality at Ash Mountain: “UNHEALTHY FOR SENSITIVE GROUPS”. I do not take these warnings lightly. My life depends on it. What is unhealthy for others, is hospitalization, or worse, death, for me. Each time I visit Casa de Kaweah (Kaweah Delta Hospital), my body becomes more and more resistant to IV antibiotics. We’re talking the big guns of antibiotics. As in, my body wouldn’t recognize friendly flora or ‘good bacteria” if it did a pirouette in front of me. When I was hospitalized in June, it was four days before the doctors could find one that I would respond to. That was the most horrific four days of not breathing that I can ever recall. Which means at some point, I’m out of treatment options. Thus, I must take drastic steps to avoid coming down with yet another bacterial infection.
So I am staying alive by living on the coast without my family, in a community I don’t know (until now!). Since August, I have lived in three separate Cayucos and Los Osos homes, provided by three incredibly special couples. If not for their gracious offers, I would definitely be looking out the windows at downtown Visalia parking lots, nurses checking in every hour poking and prodding, smells of sickness in the air, sounds of desperation and pain reaching my ears in spite of my music. Instead, I’m watching the sun rise and set; my nostrils breathing in fresh coastal air; listening to the ocean waves breaking or the stillness of the bay alive with sea birds; driving myself around for the first time in a year; taking impromptu walks with Sadie; enjoying dinner with friends both new and old; and basically functioning as the independent Rachelle I was pre lung transplant listing (two years ago 11/22/16). This has been an extraordinary experience accentuated by the gift of physical restoration.
Yet, as strong as I’m feeling now, I’ve made a very difficult decision to miss an event in Three Rivers that has been on my calendar for over a year. Oftentimes I have to bail on gatherings because I’m too sick, too fatigued, too fearful of viruses that love it when I show up. It’s the Dynamic Lives of twelve ‘beloved residents’ who will share their life stories. And somehow I was chosen to be among this illustrious group of people honored tomorrow, Sunday, at St. Anthony’s Retreat. In its second year, these stories will eventually be recorded in a book will be forever immortalized in the archives of Three Rivers and Tulare County Libraries.
Even though I feel healthy, and have a dress that will rock the ‘aging’ aspect with a planned, edgy new haircut, and my military boots (I love a good presentation!), I have vacillated for two days on returning to Three Rivers for this once in a lifetime experience. Hoping that it would rain and the smoke would finally be gone. The strong willed, “I am Woman, I can do anything” Rachelle of the past versus the “are you kidding me you frail thing, you want to end up at the Casa again?”
As heartbreaking as this decision has been for me, and with two more devastating fires burning both north and south in California, I must stay where I can breathe. The “UNHEALTHY AIR FOR SENSITIVE GROUPS” means, stay away and don’t return until it rains.
August 2018-21 months on the double lung transplant list at UCSF. Raging fires in California, temperatures above100 degrees. I can’t breathe in Three Rivers under these conditions. A dear friend sees my distress and offers me her beach front home for August. The first day I’m here, I can barely make 10 steps towards the beach. Eight days later, I’m climbing 31 steps (up and down) and walking almost a 100 feet to put my toes in the Pacific. Filled with gratitude for this gift, my waiting for new lungs is no longer impossible!
Stop the world, I want to bail (get off)’.
Thus is the roller coaster of my journey to new lungs. After the utter high of my Dodger dream fulfilled on April 1st, the inevitable decline continued throughout the month. As predicted, I was hospitalized within a week, diagnosed with shingles, taken off the transplant list (temporarily until the shingles episode is resolved), and oh......how about a fractured rib from coughing that inhibits more coughing. Similar to a person with cystic fibrosis, daily clearance of the constant buildup of mucus is essential. The pain experienced with breathing, much less clearing, is excruciating.
Thus, my silence. I go inward. I don’t answer phone calls, return messages, go out in public. I barely leave my self imposed quarantined cell-we call it ‘the healing room’, a downstairs bedroom where, surrounded by all of my life preserving equipment, tv remote in my hand ready to binge on ‘Criminal Minds’, iPad poised for endless word games, and Sadie by my side totally content and watching my every move (which is minimal).
Three weeks of this indulgence, and a quick trip to UCSF to confirm I’m off the list for the moment, and I acknowledge the reoccurring cycle. Hope, despair, hope, despair, hope. There is no benefit to the despair....no benefit to me, my beloved, my daughters and those of you following my journey. It’s too easy to go there. But more advantageous, though extremely difficult, to dig deep, uncover my inner strength again, continue praying fervently for God to reveal His divine plan for me, and HOPE.
I am again, beyond grateful for your many words of love, prayers, and patience. So I continue to ‘Treat each day as if it’s my last. Pay it forward. Exist in the moment.’
And I think I’ll stay on this world.
When I was placed on the transplant list at UCSF in November 2016, I had no idea I would be still waiting for my new lungs 16 months later. I thought for sure I’d be transplanted within 6 months to one year, or dead. Okay, so my plan didn’t quite work out on my schedule. The good news? I am still very much alive, crappy lungs and all. My days are all over the place- sometimes I may not leave my Red Hill Cabin for a week, and other times, I’m heading to San Francisco to see ‘Book of Mormon’ or Los Angeles to be a guest for the Dodger Blue Wishes program (similar to ‘Make a Wish’ but adults with life threatening diseases are considered). My point? Life doesn’t have to be over just because my ‘normal’ has radically changed. I’m riding this one out to the end, luxuriating in every blessed moment.
Steven and I are now Ambassadors for Donate Network West and in April, our local Girl Scout Troop will be earning their Donate Life patch. We’ll be educating them on Organ Donation Awareness so they can sign up donors.
This Journey is exhilarating, even in its challenges.
Last month, my main UCSF Pulmonologist reminded to me to keep living my life as best as I can, while forgetting that I’m on the waiting list. I looked at him, somewhat incredulously, and thought “you try it dude, if only for a month, and see how easy it is to forget that you could expire any day while waiting for the possibility of two new lungs that match your blood type, your weird antigens, fit into your chest cavity....oh, and be next on the list.!”
However, Dr. Hays had something. (Makes me realize he’s been around quite a few of us, holed up in our house, afraid to go out in case of exposure to some life threatening influenza, or a cigarette smoker next to you, or a burn day in Three Rivers that sets you off before others even smell the smoke).
So I’m living it up; for me that is. New Year’s Eve at Three Rivers Brewery with fire dancing and lots of celebration; lunch with my dear FBC friends at the Riverview after church; a movie (I’ve been to one in the last year) with Sierra Swinney; hanging on the rooftop of Meaghan Skye and Jean Paul Cortes new cozy abode watching the changing sky over Moro at dusk; enjoying an impromptu date night with my beloved at the Buckeroo, winding up in the hospital twice; returning home to begin decluttering again; dining out AGAIN at the Ol Buckeroo for a birthday celebration; enjoying a sunny day with Steven eating wild blackberry ice cream at Reimer’s; and visiting the Jerky Stand across from the candy store for the FIRST time!! (Did you know they’ve been here 15 years???).
I’ve had an amazing month, in spite of almost biting the dust twice in the ambulance just two weeks ago. I hope to make it to Sunday School tomorrow (I’ve never made it to church before 10:50 am and 9:30 am sounds a bit lofty!) I’m also attempting to play a bamboo flute which Julianna has loaned me, and I’ve asked Sierra to teach me the ukulele.
My life has been more full these last 28 days, then it’s been for years.....and there’s still a couple of days left. Brother Jeff arrives next week and I have plans.....of course, I must remember to take It sloooooowly, rest, conserve energy, etc., etc. Hard to do when your forgetting you’re on the double lung transplant wait list.
My take from all this? Once again, I urge each of you to forget about your “list” and live your life grand. This may be an intimate dinner with friends, or a hot date with your sweetie, or a weekend to Cambria, or sitting on your patio watching the sun set with a glass of wine, listening to the Kaweah River. Hopefully next month, no ambulance rides or 10 day stays at the Casa.
Blessings my friends....Deep breath in......Love.......
#gratitudeinallthings #drhayssageadvice #justbreathe
2018- WOW! Waiting for my two new lungs since November 2016 and life is good. With the support of my amazing family all over the United States, I’m motivated to keep fighting on until the ‘Call’ comes. Hopeful that God’s perfect timing is this year....as Dr. Hays instructed me last month, ‘keep living your life, forgetting you’re on then transplant list.’ Ok Doc., easier said then done but we’ve got this!!
Still waiting for those perfect, pink lungs that will allow me to take my first full breath since birth. One year ago today, November 18th, 2016, changed my life in unimaginable ways. Fear of death became hope for new life. Depression was no longer a heavy albatross on my already curving shoulders. Dreams of growing older and sillier with my beloved, Steven, once again was a possibility. To know my daughters would have their mamacita to cheer them on, help pick them up, and revel in their life moments, grand or small. To travel to all baseball stadiums, following the Dodgers with my best friend and baseball guru, Steven. To register everyone as an organ donor that I could. To give back to my community, my family, my friends, my church as they have been so incredibly generous towards our family.
My faith has grown exponentially as well. Trusting that God has the absolute perfect plan already in motion; I just need to Trust. And I do. And then I don’t. It is a roller coaster ride for sure, this waiting. I’m stronger emotionally, physically (a wee bit), and love just oozes all over the place (sorry for the Hallmark moment but hey, I could be dead and I’m not!). The importance of each precious moment is not wasted here, that’s for sure.
So I will wait, and wait, and wait until.....
Thank you for being on this journey with me. You can’t imagine the impact your love, prayers, phone and text messages, FB posts and many gifts encourage me, leaving me determined and so full of gratitude. God bless you my friends. #gratitudeforthegiftofanotherday #takenothingforgranted #lovetheoneyou’rewith #countyourblessings
Just because I'm on the bilateral lung transplant list at UCSF doesn't mean I can't have fun and go to a World Series game to cheer on my boys in blue, the LA Dodgers. Live life the best you can no matter the challenges....I've never had so much fun as I am waiting for my new lungs
I finally made it to a Dodger game this season. Not just any game mind you. The first postseason game with the Diamondbacks. A gift from another huge baseball fan. Just WOW! At my insistence, my husband Steven, daughter Meaghan, and myself arrived 3 hours early so I could watch some batting practice and just get the feel of the whole stadium experience. I was in baseball heaven!
Pondering the depth of emotion for this experience, I realize that I sometimes limit myself to what I can do as I enter Month 11 waiting for two new lungs. Perhaps out of fear? Not wanting to get sick and wind up in the hospital again? Yet, I realize, especially with all the wildfires raging in my home state of California, lives lost, properties and businesses completely demolished, hurricanes leaving chaos and total destruction, that we must grasp every precious opportunity. An intimate moment with loved ones, a trip around the country visiting National Parks, touring all the baseball stadiums in the US and Canada....the list goes on.
I'm so grateful for the gifts I receive on a daily basis, including this fundraising page and the continued support of so many, becoming friends with pre-transplant and post transplant people, the lessons learned along this Journey to New Lungs. Thank you. With love- Rachelle
It's been nine months since I was first listed at UCSF for a double lung transplant. Initially, I was preparing myself by packing a suitcase in anticipation of 'the call'; finally getting a Trust and important papers in order; cleaning out some cluttered closets, drawers etc; successfully establishing a strong foundation of raised monies with the wonderful tools and advice of HelpHopeLive; got back into pulmonary rehab (again!!); wearing protective masks in the public to prevent infections; the list goes on! This waiting has taken its toll on me. My usual 'glass half full to overflowing' perspective on life, has seen a lot of 'glass half empty' moments after a torturous, unending summer of days at 98 degrees, often higher. And waiting.....waiting.....move up on the list, move down on the list. It's enough to drive any one nuts. So my coping mechanism of choice? A rescue dog from the local shelter. Sadie, a little 8 year old Lhasa Apso/Pug mix with the cutest underbite that only a mama finds absolutely adorable. She was surrendered by her previous owner in February, featured on a local news station as needing a home at the end of July (I hadn't seen this clip) and ten days later, she found her furever home- right here! What this little voluptuous dog has done for me in under two weeks, therapy would have taken years. She's my shadow-always next to me, looking for me, or just content knowing we're in the same room. This rescue dog has rescued me. I have someone who needs me and I'm able to care for; we've spent more time outside in ten days than I have all summer, every morning and every night, like clockwork. She has a closet full of Dodger accessories that any LA fan would be envious; packages coming in the mail from family; and a gourmet selection of treats that shelter dog has now become picky. Now, adopting a rescue dog is my newest passion (I am still very passionate about Jesus, my family, organ donation awareness and the LA Dodgers). I'm feeling well-rounded with my various driven pursuits. Yes, the glass is overflowing again.
With smoke lingering in the air from several fires in central CA, Steve taking a tour up to the Sequoias, I find myself braving it all and driving solo to Pulmonary Rehab in Visalia, 35 miles from Three Rivers. As my PR therapist, George, said "Good for you reclaiming what has been stolen from you" meaning my independence. As I ponder this, I realize it has been stolen. The Rachelle that 'could do anything myself thank you', now almost always has a companion- Just in case! I could mourn this loss (and I do at times!) but instead, choose friends that I don't usually spend a lot of time with, consequently building deeper relationships. This dependence is all temporary- after my new lungs, watch out!!! Until then, I will continue to take small steps at regaining that independence!
New organ donation license plate! Click or tap to see it: helphopelive.org
It's the small daily tasks we take for granted: heading to the Village Market for 1/2 and 1/2 and watermelon; picking up prescriptions at the drug store or a delicious sandwich from Anne Lang's or Sierra Subs; meeting a friend for coffee at Antoinettes or dining with a friend you haven't seen in months at one of our local eateries; retrieving mail from the Post Office; pumping gas at the Chevron. No problem, right?? I use to think so. Now, since my lungs have decided to revolt with a vengeance, each stop is methodically planned, leaving more than ample time to run 2 or 3 errands and to not overdue it, since my energy is precious and elusive.
This morning, determined as is my nature, I arose 2 1/2 hours early to meet with my lovely sisters- in-Christ for an 8:30 am Bible Study. Yes. 8:30 AM!!!! At 6 am I'm sipping French roast brought to me by my beloved, spending time in the Word, percussion therapy complete, and showered with makeup on ( what's got into me? I normally drag myself to our weekly gatherings still in my pajamas, bed hair and yesterday's makeup if any at all). Yet, I arrive a fashionable 40 minutes late, as is my style these days. It just takes me longer!! Trying to conserve steps, breath, energy and not be anxious about my tardiness once again. Thank goodness many of these women are in the medical field and understand as they rush out to carry my bag and Clayton (my Portable Oxygen Concentrator). I adore these women dearly as they hover around me, winded from the flight of stairs, bringing me fruit compote, veggies, dip, crackers, cookies, and of course, coffee. After several hours of prayers and study, we hug until we meet next week.
I have 3 more stops to make, and probably the strength for one. The first stop, which is a pet business stop, is a challenge with more steps and uneven footing in 80 degree weather. Remaining calm, doing my pursed lip breathing, I just do it! I then schlep myself into the Post Office, head to the drive thru bank teller, and I'm finished! Huge accomplishments for me as I normally rely on Steven for these stops. I'm feeling empowered! Then I look at my gas tank, which I didn't fill earlier in the week due to fatigue, and it's uncomfortably low. Alright, I am WOMAN- I can do this. I pull into the Chevron, pausing for a couple of minutes debating on my strategy of phoning them to request aid. In no time, Dennis (Rich's Repair) comes to my door offering help. I can't even get out of the car, I'm so spent. The lovely, kind owner of the Chevron (I'm sorry I don't know her name), takes my cash and pumps for me. I once again marvel at the extraordinary kindness, love and support we have in this paradise called Three Rivers. Only here can I call ahead to order a sandwich, or bird seed at the Mercantile, and I have curbside service. Or flag someone I barely know to get my packages at the P.O. Even our strawberry man near Exeter brings my berries to the car! We are truly blessed folks- never forget your neighbor and how one small act of kindness leaves a forever impression. . And if you see me waving urgently at you as I pull up to a local business, you may be my next victim. I refuse to hide out on the top of Red Hill, secluded from life, laughter and friends. I'm taking advantage of this "healthy" time and venturing out more until it all changes after lung transplant. Watch out!
With so much gratitude, it overwhelms me!
Albert Einstein said, ‘There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.’
Reading Einstein's sage advice, these words exemplify my life that began on this Journey to New Lungs. Every day is an uncertainty-will I be able to breathe comfortably? Will I have enough energy to complete what few tasks I have on my agenda (note: MY agenda!)? Will I be able to visit with my dear friend whom I haven't seen in years? Will I want to talk on the phone? When I'm able to do these small, yet monumental steps for me, it is a miraculous day. I'm on my knees, thanking God. The other type of days-suffice it to say I'm fortunate to complete morning devotion, perform all my pulmonary requirements, eat some delicious food prepared and forced on me by my amazing "staff" (I know this is how you feel family!) Oh, and watch a Dodgers game which we are able to watch this year with our new satellite server, DIRECTV and MLBExtra Innings!
Which brings me to the miracle of each day. We have planned this week's San Francisco trip to see my boys, the Dodgers, face the Giants, after experiencing several good months with no severe infection requiring IV or hospitalization. Yet, there is always the unknown of each day. I have been fearful ('Do not be anxious about anything'- Phil. 4:6) that this trip may not happen after my extreme shortness of breath these last few weeks. Today is better than yesterday, which was worse than the day before...blah, blah blah!
So tomorrow we head north- armed with extra oxygen tanks, a wheelchair set up at AT&T Park, info on the closest elevators, bathroom, food! And of course I'll be sporting my Dodger duds in an enemy stadium. (I say this in jest, as I am looking forward to my first experience in this park, so close to UCSF and the area I have come to love!)
The point? Each day is truly a miracle, good or bad, as I find blessings in either one. A time to have fun, be playful or a time to go inward, be still and listen. My gift to you today-a gentle reminder of the preciousness of living.
Now #GoDodgers #beatSF #Godisgood #blessingsdaily
Pulmonary rehab just continues to get better....20 minutes on treadmill with a slight incline, 23 minutes on stationary bike. All at only 3 liters!!!! A huge improvement- must be feeling the spring. Two friends that I exercise with, and I, are planning to see The Shack after rehab next Tuesday- watch out, the O2 tank brigade is coming...
Drum roll please........the semi-final tally of the Spaghetti Feed/Fundraiser for my Journey to New Lungs is $8,880!!! Honestly, I am still in a state of extreme excited shock. This little hamlet of ours, with friends from Lemoncove, Exeter, Visalia and Tulare showed up in full force; with love in their hearts, a desire for social interaction and money in their pockets to contribute to our family during a medical crisis. I'm completely floored and oh so humbled by your response. I truly can't even find the words that does justice other than God has blessed me with an incredible community of friends. Thank you from the bottom of my heart❤.
Apparently the food ran out after serving 300 meals, and yet you kept coming...who could possibly have anticipated such a crowd! There are so many people to thank and please forgive me if I leave you off: The River View; Sequoia Park Conservancy; Paul and Becky Bischoff; Sylvia Durando and Happy Trails Riding Trails; Anne C. Lang; Wendy McKellar; Antoinettes; Sierra Subs and & Salads; Ol Buckeroo; Sequoia Snack Shack; Kaweah River Trading Post; Ja Nene Natural Body; Kacey Fansett; Main Street Exeter; Steve Garver, Maureen Garver and Wilson Garver for arranging Napa getaway with John and Ashley Derr; Kaweah Whitewater Adventures; Ken Elias; Greg & Pam Lockhart; Christina Lynch; Wood N Horse Training Stables; Acupressure by Elizabeth Holliday; Linda Judy-Pugh with jewelry from Additions by Kaitlin; Brewbakers; Debby Main; Jana Botkin; Wendy McClaren; Jana DesForges; P Kay Woods; Cranial Sacral Therapy with Charlene Vartanian; massage from The Common Element; Wuksachi Lodge; Ete and Steve Rothenberg; TaMara Dutro, Wendy Williams Woods and Sona Sargent from TRU; Mignon Gregg; Miriam Briks; Nadi Spencer; Gary Cort; Donna Prewer Smith; Three Rivers Yoga; Pearl's Scraps (Sarah Schachter Welch); Ann Kinkor; Karen McIntyre Ruhe; Emi Rourke; Jenjer Overweg of FJ Creations; Julianna Seligman; Sharanagati Leikela; Maria Howell; Lynn Buckler; Jean Paul Cortes; Lazy J Motel; Reflexology by Sage Lee; Blue Moon Nursery with Seger Moon; Lisa Lieberman; Shari Jarvis; Lynn Buckler Chiropractic; Saylor Saddlery; and Crista Matias.
A huge shoutout to my amazing volunteers under the direction of Meaghan Skye- Sierra Swinney, Jean Paul Cortes, Wilson Garver; Julianna Seligman; Julia Ehrilchman; Emi Rourke; Jennifer Shelby; Debbie Barrile Hauber; Sage Lee; Elizabeth Holliday; Luann Baldwin; Norma Main; Jana DesForges; and Katie Wightman.
Randell Kirsch and Tony Parks who provided the music; The Kaweah Commonwealth with Sarah Sarah Barton Elliott and their wonderful news coverage; John and Lynn Buckler for endless printing needs; The First Baptist Church for the awareness bracelets that I hope you all are wearing; and of course Dorletta and her amazing crew who had no idea the crowd was going to be so big!
Help Hope Live for their support, guidance and marketing tools.
My hero and husband, Steven Swinney, who has been my caretaker for these last 5 years.
And YOU- each one of you has a special place in my heart- I am eternally grateful.
#nomnomformom #donatelife #justbreathe
I continue to be astounded by the local donations that we are receiving for Thursday night's fundraiser. As we've never been involved in anything like this before, the overwhelming response to requests for items has exceeded all our expectations. Steven actually had someone ask him today why they weren't hit up for a contribution. Say what????? We've had no experience of being the recipients of such an intentional outpouring of love. So please let me apologize to those we did not talk with as there were only the four of us soliciting for this event. I've said this many times, but Three Rivers is indeed a unique community filled with generosity and quiet philanthropy. Your support allows me to feel hopeful about the future undergoing bilateral lung surgery. I am full of gratitude. #justbreathe #nomnomformom
Our local Three Rivers paper, The Kaweah Commonwealth, published this article about my Journey to New Lungs and the upcoming Spaghetti Feed. All I can say is WOW- Sarah Barton Elliott nailed it. www.kaweahcommonwealth.com
Just in- new auction item added to our growing list. A getaway to Napa! It's exciting friends!
The Spaghetti Feed at The River View Restaurant is only two weeks away. You can purchase tickets online (note flyer) or buy from Meaghan or Sierra Swinney by calling 561-3266. Our generous Three Rivers businesses and individuals have been donating some amazing prizes from local dining establishments, artwork, gift certificates from Janene's Natural Products, Kaweah Trading Post, Main Street Exeter, massage, foot reflexology yoga classes, kayak lessons and more for our silent auction and pick-a-prize. We're currently looking at some getaway prizes as well. If you have any suggestions, please call me or message me.
To give a bit of an overview to where your generous donation is going:
1-the cost of a double lung transplant is approximately $1,000,000 for the first year of surgery and recovery
2-Medical costs include: co-pays; pre-transplant evaluation; follow-up care and testing; additional hospital stays for complications; anti-rejection and other drugs which can exceed $2,500 a month; rehabilitation.
3-non-medical costs include: lodging and food in San Francisco for myself and one caretaker; transportation & fuel costs to and from UCSF; lost wages for caretakers.
It's quite mind boggling and somewhat terrifying when I look at the financial side of a double lung transplant. However, the outpouring of support from my dear Three Rivers community, my incredible family and friends all across the country, and a number of people I've not yet met is unparalleled. The peace of mind is indescribable- the thought of breathing my first real breath since childhood brings me to my knees. Honestly, there are no words other than gratitude to you all for your support, love, kind words and fabulous food!
'You are the wind beneath my wings.'
Now let's have fun!! March 9th, 3-7 pm, River View, cash bar. I'm hoping to be there with one of my fashionable masks on (please keep colds at home!) God bless!
It's quite surreal, waiting for 'the call'. After three years of contemplating the possibility of a double lung transplant, one year of making the decision, six months of intense medical testing (the likes of several I hope to never undergo again!), and finally..... I'm on the list. For almost three months....I jumped whenever an unidentifiable phone number showed up for about two of those months. Now I'm just living my life, trying to keep those nasty bacterial infections from rearing their ugly head, stay active, and keep weight on. I may just be surprised when I get 'the call', forgetting I was ever on the transplant list. Or....maybe not! #justbreathe #Godsperfecttiming #patienceandtrust
A huge shoutout to my pulmonologist, Dr. Kathryn B. She has been a strong force behind 'my journey to new lungs' and has helped keep me alive these last 8+ years by using proactive treatments. She introduced me to my life changing percussion Vest, made sure I got timely appointments to imaging centers (for pic lines and IV antibiotics) and so much more. And she hears me. We have conversations about the best treatment protocol, and she's made herself available when I need her. You can't imagine the many times she's messaged me back when I've called her in a panic while on a scuba diving or skiing vacation (I envy her physicality but just wait doc!) The only time she couldn't respond to me was when she was the patient in the ER herself though her guy called me back quickly! I admire her and am blessed to have her as my main lung doctor. Oh, and our birthdays are just one day apart. She's a rock star! Thank you from the bottom of my heart Dr. B❤
January 13, 2017
This morning, as I checked my HelpHopeLive fundraising page that our family began 1 1/2 months ago after being listed for a double lung transplant, I found myself in tears. Tears of gratitude, of overwhelming love, and a feeling of 'Why me?" How is it possible that our family is deserving of such generosity? As I ponder and pray about this, I realize we are all worthy of such an outpouring of kindness and support and unfortunately, not all well deserved folks receive it. However, I've seen it happen in our little village, where people battling for their lives against cancer and other life threatening illnesses, have received financial help, meals, transport to appointments and so much more. Human angels, some known, others anonymous, quietly appear, serve, and do what needs to be done. The recipient is blessed, and likewise the person who gives of their time and resources is blessed as well. It truly is amazing! For me, thankfully, I have family and friends sharing my story and therefore people I don't know, or have seen a few times, or not for 40 years appear on my fundraising page. Just wow!
So the update of our first (and it is only the first!) goal to raise $30,000 is..... $18,530!! 62% of our goal in less than two months! My mind is completely blown! There truly are no words to express our gratitude. I humbly thank you from the bottom of my heart ❤️
Your help has given us so much peace of mind that we won't have to be concerned about the additional costs of a transplant - non covered medical expenses, frequent travel to San Francisco, lodging for 2 months after transplant, a lifetime of anti-rejection drugs and so much more. Instead, we can wait, with eagerness, fairly stress free, for 2 new lungs.
God bless each of you! My hope is to someday bless others as I have been. Please keep sharing your thoughts as well- they bring me such encouragement.
By now you know I'm a passionate, albeit extreme kind of person (think relatively new Jesus-freak, Dodgers, daughters dancing...). At this point in time, my focus is organ donation and lung transplantation for obvious reasons. It's all or nothing...I found this incredible artisan from the Netherlands, on Etsy, as I was doing my minimal Christmas shopping from my house on the hill. She gifted me this leather bracelet that reads "keep fighting. Never give up". It has the green awareness ribbon for lung transplantation and a pair of boxing gloves. How amazing is that!! Remember, no matter what battle you are fighting, 'Never Give Up'!
I am Rachelle's big sister, and I remember when, as a child, I first became aware that she was not well. She was maybe three or four, and we shared a bedroom in Cottage Hills, Ill. The room was so small, and our twin beds so close, I could reach across at night and touch her. I listened to her breathe, and cough and wondered how she could sleep.
I eventually moved downstairs to our concrete, unfinished basement. I told my parents it was because I needed my own room, but it was really so I wouldn't have to hear her struggle.
Rachelle and I have two brothers, and I'm sure they feel like me, guilty for being healthy when our beautiful sister has had health problems her whole life.
I do know the three of us would never have had the strength, heart and grace that our little one does.
Wow!! I'm overwhelmed with emotion and gratitude. You all came through BIG time for #GivingTuesday in your help to Rachelle's Journey to New Lungs. Contributions were made from our local community of Three Rivers, but also Chicago, New York, Las Vegas, Providence, RI, Arizona, Washington DC, all over California, Texas, Massachusetts, Michigan, Illinois, Wisconsin and more.... what an incredible blessing you are to our family. We doubled our funds in one day- thank you from the bottom of our hearts. I'm posting this as I sit in the ER of Casa de Kaweah (thank you Kim for this term). Yes, I'm back in the hospital after 2 weeks of being home. Huge head cold, fever, and increased congestion- we are always packed and ready for our now, frequent visits here. Please continue to pray for healing and beautiful new lungs soon
It has been eight days since the life changing, life giving announcement "You're on the List." We've experienced so many emotions ranging from extreme hope and excitement to oh my goodness, This is HUGE! So much unknown. But as my friend, Karen, said "Keep the eye on the prize." And the prize is buying me more time to enjoy my family, milestones, beach trips, Dodger games, life that is lived outside home. Whether it be an extra 3 years, 5, 10, 20 or more, it is definitely worth it and more than the time left without the transplant. So we have HOPE - there is no other option. Another friend. Steve, whose wife had a bilateral lung transplant three years ago and is doing very well, tells me the worse is over- getting listed. I hope he's right. The thought of 8 weeks in San Francisco, working my bootie off to get strong, stay healthy not reject my new lungs, and yes, stay germ free. A tall order. So we wait for "the Call". It could come tomorrow, next month, 6 months, 1 year.....again, patience and trust are such big life lessons for me on this Journey. My LAS (Lung Allocation Score) is 35.5 out of 100, 100 being the most needy of transplant. So even though my score is low, I can still get the call if the perfect lungs are available, Chances are, we'll be woken up in the middle of the night, and have a limited amount of time to drive to UCSF, Thus, our bags are backed and ready to put in the car. We will have a few practice runs because that's how I roll.Your continued prayers, love, kind words, and support mean the world to me and my family. Today is #GivingTuesday, an opportunity to practice random acts of kindness and give to others, I know there are so many needs that you're faced with every day but I ask, if it's on your heart, please make a donation, no matter how small. Our out of pocket expenses are crazy high for the duration of my life. God bless you.
It's official- I'm listed for lung transplant! After almost 7 months of intense testing and jumping through medical hoops, we've reached the next hurdle-waiting for the perfect lungs. More on this later. We're still reeling from the excitement of the news. Celebration time!! Thank you all for your continued prayers and love
A gift of another day....I find it so important to acknowledge this thought no matter where I am or what I'm doing. Especially today, the third one in yet another visit to my home away from home, Kaweah Delta Hospital. The controlled burn in Mineral King did not take long for this immune suppressed, lung transplant wanna-be individual to wind up in ER on Saturday, unable to breathe no matter how many liters of oxygen I was on. The good news, and yes, I believe there's always positive with the negative, is: 1) we didn't wait for me to try and get heroically better by waiting for home therapies to kick in (historically this has not been successful-duh!!) 2) I was able to go by car instead of the ambulance 3) my healing from this infection is improving more quickly because of earlier treatment (thanks to my transplant team with the demand to get help immediately). 4) I see medical friends that know me by name, seem eager to help, go beyond the norm (I am still waiting for my morning americano from my nurse though - service please?!).
The downside is, I temporarily am off the transplant list until I'm at my baseline. More practice in patience and faith- I must admit, at times I say to God "Really?? Again?" The answer of course is in His perfect timing, not mine.
You will not see much of me this winter (surprise!), unless you visit me at home. Please do - I need my friends and support more than ever. Just bring no germs with you-it's critical to keep the bugs away. You'll see me sporting my "germ freak" masks when I am around people. I have increased my mask wardrobe from the Dodgers (still my fav) to include Wonder Woman, Betty Boop, Dancing Owls, a Thanksgiving gobble, and a praise one. I'm already planning festive Christmas ones. Look for updated photo.
Blessings to you all. Remember to relish this day, hug the one next to you, love like there's no tomorrow....this life is so precious and fleeting.
I received my Insurance authorization for my transplant. Just waiting to hear those life-changing words 'You're Listed'! I had a small hiccup this week that has delayed it- a monthly blood draw checking my antigens. Yes, I'm learning to be still and let God...
May God continue to bless you, you are an inspiration!
Wishing you lots of love from Philly
Caroline & George
Just read your August update Shelly and I just wanted to send a little love to you and your husband and family. You are such a fighter - and always with a smile on your face. I remember our days at AIS together! I have always loved your spirit!
All the best, Chrisy Masters Jones, Class of 1978 at AIS
Chrisy Masters Jones
Keeping Rachelle in my prayers.
Rachelle, aka “ Shelly” to her Agnes Irwin School classmates and friends, “ You Got this !” ❣️
Mary Masters Opila
Love and healing from the wilds of Wyoming.
Stay strong, family! Rebecca and I are thinking of you and praying that things continue to go in the right direction. This small gift is accompanied by so much love. You inspire us, Rachelle, Steve, Meaghan, and Sierra!
Much Love from Three Rivers, CA
Susan and David Ardesch and Wind
We love you and are rooting for you, Rachelle!
Keeling your entire family in our thoughts.
Sue and Paul Schwarz
You've got this!! So many prayers for you! Hugs!
Blessings & Miracles I wish for Rachelle during her recovery of her 2 new lungs. Praise our Lord!
Melinda & MacFarland
We continue to pray for your health, comfort, and recovery. We love you, Shelly!
May your family feel the love of Gods arms around you. May He whisper the secrets of peace into your sweet ears. May the fragrance of heaven on earth surround you. May your eyes see the love of God in the smallest of moments as you progress through each day.
Steven- remember to hydrate, sleep and take care of your body.
My soul clings to you; your right hand upholds me. Psalm 63:8
"Shelly" is a warrior and a very positive force in this world. I can't think of anyone who is more deserving of a life-extending transplant than she is, and I am grateful she and her family are working with Help Hope Live, which I've supported through the years (on behalf of others), to build community support for what's ahead. Great teamwork!
Prayers and hope for a successful transplant "experience"... and many more Dodgers-Phillies games ahead, Shelly!
Jim and Lin Buck
Sending love and positive, healing vibes!
Love you all!!! The Harrell Clan
So happy to hear you are breathing on your own. Much love, Patty and Nate
So very happy for Rachelle and her family for this gift of life!
We are so glad to hear things are going well and hope for continued progress on this new road!
Keri & Paul Hardwick
Keep looking up!
We are sending you love and strength for a speedy recovery. Blessings on you and your family!
Well wishes from Texas!!
Sending you all of my best thoughts, Rachelle. Hope to see you again soon! love, Peri (in memory of your friend, Frances Good.)
Much love from your neighbors, the Boiano’s & Roscoe
Sending love and prayers!
Thnking of you, Shelly and Steve and your beautiful daughters this Christmas season and praying that the new year brings you a new set of lungs.
Mary and Don
Donald & Mary Opila
I wish I could give more but I know it all helps. I love you Cousin. God bless you and keep you till you can get your new lungs. Anita
I hope you are doing well <3
We love you Rachelle! Happy birthday!!!! Here’s to many more, breathing with ease
We'll be thinking of you and praying for you each and every day. Keep the faith!
Jim and Peggy Entz
Rachelle, we are here for you! My heart is glad to help you. Your friends from Lemon Cove.
Teri and Ralph Blaser
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.
How ya doing Rachelle? Eric wanted me to ask you what your Spider Solitaire record is! Thinking of you. Sending love and light your way.
Rachelle, you are the essence of Faith, Love and Grace. I send my love and prayers to you during this emotional, challenging and very hopeful time.
Jesus says "Come to me all who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light." Praying for you to find rest and comfort at the feet of Jesus. We love you dearly and support you in this journey!
Chase and Rachael Mac
you are an inspiration of what Faith looks like, thank you for sharing it with us. lots of love and prayers sent your way through this difficult time.
Curtis & Traci Morgan
Scott and I stand behind you with our prayers and positive thoughts, Rachelle. We are very excited for the day we can watch you do your "Happy Dance" with your new lungs!!! Grace & Blessings with our love.
Melinda & Scott
You have cared so well for our animals all these years, and all of us (two-legged and four-legged) are sending our love to you on this hopeful but challenging journey. You are an inspiration!
Linda, Tony, and the many furry and feathered critters
We're praying for you and those who take care of you.
You got this Rachelle. Thinking positive and hopeful thoughts.
Sue and Paul Schwarz
So inspiring to follow your journey. Good luck and much love to you from the Pfaff family, both human and feline!
Wishing you the best of luck with the transplant! Please let me know if there's anything I can do to help. Sending love and hugs to your whole family.
Love, Amy Brown, Toots, and Sunny
I can't wait to meet you and hug you.
So happy you and Steve came into our lives. Sending you love and prayers every step of your journey to the perfect pair of beautiful lungs ❤️
"Delight yourself in the Lord and he will give YOU the desires of your heart..." Psalms 37:4
Thinking of you Shelly!!
Mary Masters Opila
Love you! ❤️
The Lieskovan's ...Both Two and Four Legged
We are standing with you in prayers and love...Hugs...Again Psalm 91:
Mike and Brenda Higgins...cuz
You've got this Rachelle!!
Susan and Steve Harrell
So much love and positive energy your way, you are so lovely and massively strong❤️
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In honor of Rachelle Ledbetter
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