Boo’s Breath

Here’s the sitch... My sister, Catherine Warholak, from here on out referred to as Boo, NEEDS a lung transplant. It is not “one of many options,” it is the only option for her to remain alive. She has a lung capacity of 25%. She uses oxygen at 5 liters per minute, all the time. Upon exertion, with something as simple as taking a bath, she gets winded and has to rest. She has NEVER smoked. Boo has a genetic disorder, #alpha1antitrypsindefeciency. She is missing a necessary protein in her body. When she was a teenager, she was diagnosed with #bronchiectasis, where airways become damaged and make it hard to clear mucous. Mucous builds up and breeds bacteria and it cannot be cured. Fast forward 13 years later. Now the trouble has really started, in more ways then one. She was pregnant with my nephew, Reuben. Her immune system became weakened. She developed pneumonia in her first trimester and was hospitalized.The doctors thought she had TB. Upon further testing, they discovered she had acquired Mycobacterium Avium Complex, a cousin of TB. It has a 2-3 year drug regimen treatment that couldn’t begin until after Reuben was born. A lobectomy was thought to be the best treatment, but that turned out not to be an option. After Reuben was born, with further observation, the physicians discovered her disease had progressed and had spread throughout her lungs.  In 2001, she traveled back and forth to Chicago for a year to participate in a study for the bronchiectisis. They thought she might have Cystic Fibrosis. Her pulmonary condition is similar to CF. In 2002, she was tested for alpha1 antitrypsin defeciency. Winner, winner, chicken dinner! Her pulmonary situation deteriorated and just got very complicated! And incurable. She is more prone to bacterial AND fungal infections. She NEVER has just a cold. Usually, hospitalization and very strong medication is involved. And, of course, she has allergies to some of the medications that might have helped. Sooooo, years pass. And just like any younger sister, she remained a steady “pain in my neck.” Did I mention, she is the middle child? Now, it is 2019. She had bargained a long time ago with God to see her son graduate from high school. My goodness, we thought she was going to live forever! He is now 20, and growing up nicely. But, he has never seen his mother, healthy. He is a “good boy.” He helps her as he can.  However, he can’t do everything. Throughout this whole period of trials and tribulation, no mention was ever made regarding a lung transplant and what it might entail. In 2017, she discussed the possibility  briefly with her alpha1 doctor, Charlie Strange, MD, in Charleston, SC. She at least got some guidance from him. She needed to lose some weight; cardio exercise was not high on her list, considering she was on oxygen at that point. He explained there are other criterion that would need to be met. He also mentioned that, hopefully, a “new” set of lungs could last about 10-15 years, give or take. He wanted her to use her original lungs for as long as possible...So she finally had some guidance and direction. Back to closer to present day, her new pulmonologist, Cynthia Brown, MD from IU Health, actually SUGGESTED that Boo look into a lung transplant program back in the Fall. After much research and review, she chose Duke University in Raleigh-Durham, North Carolina. We, not the royal we, but Boo, Reuben and I were invited down for a 2 day evaluation. It seemed to last 2 weeks. For that 2 days, they evaluate you and you evaluate them. Then, you wait the longest week of your life, to date, for a response. The team meets and discusses each case. Then decides who qualifies. We got the email. Good news! She is a candidate and they want to see her again in June. At that point, she has to have all preliminary testing done, have been in Pulmonary rehab, have raised a minimum of $30,000 (for relocation and a year of anti rejection medication for after the surgery,) have a completely dedicated caregiver (me) + a spare, and be ready to move her whole life to North Carolina for 6-12 months. Long story short, she is only 50 years old. Young enough to truly appreciate a new lease on life, and old enough to recognize a God given gift at a chance to die an old”er” woman.  And besides, I need someone to “taunt, tease and torment.” And it is ALL about me, of course. This is where you come in. She has to raise this money by mid June. It is one of Duke’s required criteria, before she can be accepted to the Transplant program. We will be hosting a Mother’s Day Greek Lunch Buffet with a silent auction opportunity at Biltwell Event Center in Indianapolis. Reservations can be made at [phone redacted]. Look on FB for future, not yet decided fundraisers, under Boo’s Breath  Thank you, in advance, for any assistance, no matter how big or small. It will help. Jeanette Sawi
  • Penny Kosinski 
    • $250 
    • 21 mos
  • Anonymous 
    • $25 
    • 21 mos
  • Mariann Fischer 
    • $27 
    • 21 mos
  • James McHugh 
    • $25 
    • 21 mos
  • Kimberly Watson 
    • $195 
    • 21 mos
See all

Fundraising team: The Awesome Alveoli (3)

Jeanette Warholak Sawi 
Indianapolis, IN
Catherine Warholak 
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