Help Lisa Breathe Easy: Support Lung Transplant Evaluation

Hello everyone,

My name is Erika, and I am Lisa's youngest daughter. My mom and I have an extremely close, unique, and irreplaceable relationship. She also has that with my sister Angela (whom she adopted as a single woman). Bottom line, we want and NEED our mom around, healthy, and happy, for years to come. Her husband, extended family, and friends of all ages and walks of life feel the exact same way. This woman inspires everyone with her positive personality, nurturing soul, creative mind, and a wide-ranging career helping people as a social worker and as a friend. The list goes on...

As many of you know, my mother has been facing a rare type of pulmonary fibrosis/lung disease (I will post background info she has shared below). To say it has been difficult to watch her health decline would be a significant understatement. This disease is progressive, terminal, and there is currently no cure. In three years, my mother has gone from needing supplemental oxygen during exertion to needing more and more of it 24/7. She has lost 40 lbs. The closest thing to a "cure" is truly a "miracle" and gift of life, a lung transplant. I say miracle because the donor must be a perfect match.

We are so thankful that St. Joseph's Hospital in Phoenix, Arizona has agreed to evaluate her for transplant. There will be EXTENSIVE tests over 3 weeks (March 24-April 11) where they will decide if my mother is a good candidate to survive and recover from a lung transplant. It is a lot to go through... but we have met multiple people who have received and excelled after transplant in their 60s and 70s! Those individuals give us HOPE. And I personally believe it is God, angels, and our willpower that keep us going during challenging times.

While my mother is self-reliant and embarrassed to ask for help, she knows that many family and friends WANT to help. There comes a time in life that we must ask for support. My mother is living off social security and has limited her work contracts to one (providing remote foster parent training) as her health has had to be a priority for now. I have switched from working a structured full-time job to 2 flexible part-time jobs without benefits to be with her for medical appointments, prescription pick-ups, and physical therapy. I am also a new mother and believe my son has been one of her best medicines.

My mother is understandably worried about the evaluation costs and if she gets listed for transplant... potentially moving and maintaining 2 rents. While I understand my mother’s hesitation to ask for help, I will be brave and ask for her. I know my mother has long-time friends in Michigan, Louisiana, Texas, around the USA, and her village also extends to other countries too, for example: Canada, Belgium, Japan, Uganda etc.

This evaluation is going to be physically and mentally exhausting for her and I feel the least we can do is reduce the financial burden so she can focus on her health. We cannot thank you enough: any donation large or small will truly make a difference.

All donations will go directly to her bank account.

The following are ways the donations will be used:

- Rental van for 14-hour drive

- Gasoline for the drive there and back

- Rental of portable oxygen concentrator

- 2 hotel nights en route

- Air B&B for 18 nights

- Meals

- Groceries

- If my mother is listed for transplant, she/we may need to move to Phoenix QUICKLY, and stay 3 months to a year for her follow-up care

- If there is any extra money, we would save it for upcoming health needs

OPTIONAL: (IF YOU WOULD LIKE TO CONTINUE READING, THIS IS LISA’S MESSAGE)

"The good news is that I have been asked to come to Phoenix, AZ to be evaluated for a lung transplant at one of the top high-risk transplant centers in the country! The bad news is that my health is declining with the progressive, terminal disease (Pulmonary Fibrosis) that has already scarred my lungs and made breathing difficult for me.

A successful transplant would mean that I would not need supplemental oxygen anymore and could resume a ‘normal’ life, albeit with taking many, many medications a day. The transplant evaluation is scheduled for three weeks, March 24-April 11 in Phoenix. Leon and Erika and Mark and baby Brady and my sister Carolyn will be there to learn about the daunting responsibilities of being my primary caregivers. If I do get transplanted, it is a big deal --- days or weeks in ICU, rehab, release with frequent medical appointments, etc. – and an anticipated 3 months to a year living in Phoenix for follow-up care.

I have been planning for either dying or living… doing a will, selecting music for a memorial service… and also making a bucket list of things I still want to do.

Clearly, I have lots to live for. At the top of my list is my “want” to see Gavin launch into a thriving and more independent life. I want to see Brady learn to talk and find out what his personality is all about. I have always thought my later chapters would be the best – the most authentic me – making art, writing, mentoring, traveling, reflecting, and shining. I still hope so.

I need your prayers and emotional support. The costs are also daunting. Your gift of any amount is so gratefully appreciated… I am getting teary thinking about it!

BACKGROUND INFO:

My lungs were very healthy just a few years ago, and I literally walked a couple of miles daily. Then, suddenly, in 2022, I got totally winded going up two flights of stairs. I knew something was not right. A CT scan led to a diagnosis of Idiopathic Pulmonary Fibrosis. I was immediately put on antifibrotic meds and then with a more refined diagnosis of Hypersensitive Pneumonitis and Antisynthetase Syndrome moved onto steroids and immunosuppressants. I lost 40 pounds.

Now, I use oxygen 24 hours a day, 7 days a week - even sleeping and in the shower! My oxygen level drops to the high 70s with exertion, and I need to turn up the flow level just to walk as far as the bathroom. I haul a big oxygen tank behind me that lasts about 3 hours for anything outside of my apartment. In my apartment, I am tethered to an oxygen concentrator with tubing which stretches enough for me to reach both ends of my small apartment. Sometimes I envision myself as an astronaut on a spacewalk! I am so grateful for the support of family and friends on this crazy journey. I am glad that I worked up the courage to share my current situation with you."