Monday, 11/26, marks our next major milestone - Caleigh will be undergoing open heart surgery, a pericardiectomy, in an attempt to cure her of her idiopathic recurrent pericarditus - a side effect of her latest double lung transplant. This wil take place at UCLA Ronald Reagan Med Center - we have some of the best doctors and nurse in the world and we are incredibly appreciative of their efforts to help Caleigh get through this event.
While we work incredibly hard to cover Caleigh's medical expenses on our own, we are still a young, newlywed, single-income couple working through these speedbumps.
Any and all support is appreciated. Thank you for your time, consideration, and community. While we're asking for help today, we cannot wait until we're in the position to pay it forward. We will in a major way some day.
More info on the journey:
Here is a timeline of Caleigh's life to date - while this is by no means all-inclusive, it touches on some of the biggest highlights:
- Born with Cystic Fibrosis (genetic disease that deteriorates the lungs, digestive system, and other organs by way of freqent infections and scarring over time )
- Lung function dropped to 13% - added to the lung transplant waiting list
- 1st Double Lung Transplant (19 month waitlist)
- Abscess the size of an orange in her lung almost resulting in the loss of the new left lung
- Life-flighted from her first vacation to her transplant center due to DIOS - ended up on ECMO and in a coma for a couple weeks
- Acute lung rejection in January
- Chronic Lung Allograft Dysfunction and Bronchiolitis Obliterate Syndrome (organ rejection) by June
- 2nd double lung transplant in June after waiting for 4.5 months inpatient in the hospital
- 1st pericardial effusion leading to her first heart surgery. The surgeons put in a small pericardial window to drain fluid. This failed.
- 2nd, 3rd, and 4th pericardial effusion by November
- 11/26/2018 - Pericardiectomy
This leads us to now: Caleigh will be undergoing a pericardiectomy on November 26th. This means the surgeons will conduct a median sternotomy where they crack the sternum to access the heart. They will then remove as much of the pericardium (membrane surrounding the heart) as possible and replace it with an artificial membrane. The school of thought is Caleigh's pericardium is inflamed for an unknown reason resulting in the build-up of fluid around the heart. This leads to tamponade, a serious condition where the fluid compresses the heart preventing it from allowing blood to flow throughout the body. Caleigh has had early onset tamponade 4 times now since her second double lung transplant. This pericardiectomy will hopefully prevent effusions from occurring around the heart again enabling Caleigh and I to return to life outside of the hospital and health concerns.
In 2017 when Caleigh went into rejection, instead of going into hospice like her previous medical team recommended, we fought. We searched throughout the country to find a center that would accept her for a second transplant. We found it in UCLA. Unfortunately, UCLA was out of network for her previous insurance. This meant, for Caleigh to have hope for longevity, we would assume the financial responsibility. While my employer has a good healthcare plan that covers many of the costs…many is not all and after 8 hospital admissions over 9 months and countless specialist and pharmaceutical copays, we are feeling the brunt of healthcare expenses.
SO, we've started this campaign to hopefully help cover some of the massive expected and unexpected healthcare costs.
Any bit will help!
If you are interested in learning more about our life, our family, our fight, check my wife's instagram out @Fight2Breathe or mine @Mr_Fight2Breathe . Additionally, you can find how we pay it forward through community initiatives at www.Fight2Breathe.org.
Again, thank you so much for your time, consideration, and community. While we're asking for help today, we cannot wait until we're in the position to pay it forward. We will in a major way some day.
Bryan (and Caleigh)
DonationsSee top donations
- Gary and Mary Willenborg
- Michelle Malblanc
- Joelle Hipp
Fundraising team: Team Fight2Breathe (2)
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