Project of a Lifetime

I've had my share of luck in my career working on some great projects together with many of you. The latest one, Amazon Kuiper, recently launched a couple prototype satellites in space. But no project compares to project LonnasLungs!

In a brief post 7 months ago I wrote that my wife, Lonna, had undergone a double lung transplant with more details to come. Here's the "more details" article for all my lifelong work friends. I don't really do the other social media platforms and my old twitter account got hijacked so you'll have to suffer through a personal article on a professional work site.

Yes ... that's really Lonna hiding away behind all the life maintaining machinery and bags of IV drugs in the picture above. She was transplanted at Houston Methodist Transplant Hospital on March 6, 2023.

How did we get here? A few metrics:

• Scleroderma diagnosed ~25 years ago
• Scleroderma is a crappy autoimmune disease that effects all systems
• Pulmonary involvement ~5 years ago (PAH, ILD, VOD, PCH PA)
• Pulmonary function went from Normal -> 60% -> 40% -> 25% -> 18%
• Jan 2022 … “Time to think about a lung transplant”
• 2022 was the year of pre-transplant eval and tests
• Rejected by 3 transplant centers due to scleroderma
• Houston Methodist takes higher risk patients
• This time last year … ~100% O2 tanks … and a lot of it
• In 2022, > 35 nights in hotels. > 12 trips from Austin to Houston
• Put on the transplant list at the end of 2022
• Dry run Feb 24. 2nd call a week later & transplanted on March 6, 2023
• Every transplant is unique
• Lungs were done. 10 days on vent. 15 days in ICU. 33 days in hospital
• Feeding tube for 3 months due to esophageal issues from Scleroderma. Nothing by mouth. No food or water.
• 2nd surgery to address esophagus (fundoplication), hiatal hernia and remove the feeding tube at the 3 month mark. More hospital time.
• ~10 infusions to address Donor Specific Antibodies and CMV. Four more hospital nights.

Where are we now? We just got back to Austin for our longest stay yet, 3 weeks. Lonna is almost 8 months post transplant. She has been completely off oxygen since leaving the ICU. She has no restrictions on walking & can walk thousands of steps per day. She hit some tennis balls on a court a few weeks ago. There is one surgery currently setup for January to fix an abdominal hernia caused by the 2nd surgery. Her Pulmonary function is probably better than almost all the people that read this article. We still live mostly in Houston through the spring of 2024. Our social circle involves a lot of doctors and medical people.

Pretty life changing for the whole family and we aren't taking anything for granted.

I wrote about the journey as it was happening on caringbridge.org. Search for "lonnaslungs" or go directly to this link. I'm warning you ... there are more than two dozen entries so it is quite the trip down the rabbit hole.

Lonnaslungs ... a project of a lifetime. We've learned so much and continue to learn. And we've learned that we have some great friends!