FEARLESS: Colleen’s Version

Colleen was born with several congenital heart defects, mainly double outlet right ventricle and right atrial isomerism, heterotaxy and dextrocardia. She has had 3 open heart surgeries all before age 3 as a palliation series for care and multiple heart catherizations and procedures, tune ups if you will over the last 28, almost 29 years.

Over the summer, it came time to talk about further care planning as her disease processes have progressed - her left lung progression with pulmonary AVMs causing bleeding, coughing up blood, her liver developing the beginning stages of cirrhosis, the start of Protein Losing Enteropathy and worsening heart failure. The decision was made in July to start the work up for getting her listed for a heart transplant.

After 4 months of blood work, tests, multiple appointments with various teams such as Infectious Disease, Cardiology, Psychiatry, Hepatology and Gastroenterology, surgeon meetings and Transplant team meetings the decision was ultimately made that she would not be a candidate to list for a new heart due to the significant preoperative and postoperative risk of death due to non modifiable risk factors including her complex anatomy, bleeding risk, previous surgical procedures and stenting, and time under anesthesia.

At this time, her Cardiology team would like to seek out second opinions, the plan is to go to high volume hospitals that have taken on the greater risk transplants in hopes of a successful outcome. Currently the plan is to start with Vanderbilt in Nashville as well as University of Pennsylvania/ Children’s Hospital of Philadelphia for their thoughts on transplantation. Instead of just a heart, this could be a heart/liver transplant. If they do not agree, UCLA or Cedars Sinai in California would be next pick for review. Pending hospital recommendations and risk, palliative care and no transplant may be the route taken depending further information.

Our hopes for Colleen is to help off set the financial burden of transplant work up, travel and hope that she will be able to decrease her full time office work schedule to have a better quality of life pending outcomes. There will be lots of travel and medical expenses as well as questionable relocations if transplant is proceeded with for time waiting for transplant and during recovery. Currently from the last transplant work up she has exhausted all her paid leave. She is not eligible for FMLA as she works for a small company.

With her disease progression, her quality of life has really dropped in the last 6-8 months, she is physically very tired, her oxygen saturations remain lower even after 2 heart catherizations, one in July and one in October and with working her full time office job it is hard for her to get the rest she needs. Something as simple as going to dinner after work will leave her exhausted and on the couch for the next 3 days after working ant the office.

The future is unknown, but if the risk is too great for transplant our hopes are to get Colleen set up to have a higher quality of life to live the rest of her life to her fullest potential. She has been and always will be a fighter.

If you are able to make a donation, we would greatly appreciate it, if not, that’s okay too. Please keep Colleen and our family in your prayers as we navigate this unexpected journey.

~ Katie Kready, big sister