Rachelle Ledbetter Journey to New Lungs

First post: Oct 14, 2016 Latest post: Nov 30, 2016
 Welcome to our CaringBridge site. We've created it to keep friends and family updated on Rachelle’s progress. We appreciate your support and words of hope and encouragement during this time when it matters most. We are using this site for updates only, if you wish to donate please visit,  https://helphopelive.org/campaign/11905   Thank you - the Ledbetter/Swinney family

I am on a journey to hopefully receive two beautiful working lungs. It's taken me 5-7 years to acknowledge the severity of my lung disease, but pride is no longer an issue. To achieve this huge goal, it's so imperative for me to have the support spiritually, emotionally and physically of my family which also includes you, my beloved community.  Steven has been my rock more than ever these last few years and it's a relief to know he has the support as well.Brief history: I've had asthma since 3; I was the first child diagnosed with Allergic Bronchial Pulmonary Aspergillosis (ABPA) at 9 years old after living in Brussels, Belgium for a year. I was diagnosed with severe Bronchiectasis, which is due to my ABPA and asthma, about 8 years ago.  The last 1 1/2 years has shown quite a decline as I'm on supplemental oxygen 24/7 with at least 4 hospitalizations, and chronic infections requiring IV antibiotics.Present: after my March hospitalizations we decided to move towards trying to get on the list for a double lung transplant (an idea we explored in 2012-2013 and decided it wasn't time).However, to even be considered as a candidate, I had a ton of testing to do before they (lung team) would even talk about the possibility. This all started happening in May and June with pretty much every part of my body being tested from ctscans, mammogram, dermatology, heart, dental work, etc. and so much more. It's a process but they want me to have a successful surgery of course.My last visit to UCSF (our choice for transplantation) on 9/29/16 reviewed all of my tests. Foremost,  I need to recover from my last hospitalization in September which took me down hard!! I started a pulmonary rehab program to get stronger, gain weight, continue practicing pursed lip breathing in all that I do and to get a handle on my anxiety (caused by the chronic disease) without the use of Xanax. I'm ALMOST listed- I have to get a "swallow" test done in Fresno, then preauthorization with Blue Cross. In a couple of weeks, I hope to let you know NOW I'm listed. Then the search for the perfect lungs for me begins. We could get the call within a week or 6 month or longer. There are so many blessings in this process: of course Steven has gone beyond my wildest dreams in his care and love; my relationship with my biological family has been rekindled after living so far from all of them- huge blessing for me; we've reconnected with Steven's family which I'm so grateful for; and my local Three Rivers family has been incredible. 
So amid the challenges, I find joy and comfort each and every day knowing that my Heavenly Father is the pilot. My only concern is - given the fact that the transplant will take place in SF, what are the chances that my donor will be a Giants fan! I told Steve that if I start wearing orange and black (not good colors on me unlike the Dodger Blue which brings out my blue eyes) put me out of my misery........well I guess Giants lungs would be better than the alternative, right? God bless each of you and thank you for your prayers and l you for visiting.

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