This One is Not Going to Make It.

Those are the words my wife, Lonna, remembers the paramedics in the ambulance whispering amongst themselves as she got carted off to the ER on January 14, 2025.

I'll cut to the chase ... she made it ... 15 days in the hospital ... it was the closest call yet. Which is saying something considering that she survived/thrived a double lung transplant almost two years ago. We've learned that the life of a double lung transplant patient & their caregiver can be a roller coaster.

We've learned a lot along the way. Maybe some of it may come in handy for some of you someday. Hopefully you will never need it, but you likely will ... everybody does.

Lonna's medical journey has been a long journey. Over 25 years ago she was diagnosed with scleroderma, 6 years ago pulmonary involvement was apparent, 2 years ago she had the transplant. Last year had some challenges with RSV, Covid again, a form of Influenza I've never heard of, a massive blood clot, ear tube, multifocal pneumonia, a repaired abdominal hernia, more pneumonia and more. Despite this, we found time to go on some epic adventures too.

I've written about our experiences with the medical machine a few years ago here. More recently I wrote about the transplant experience here. The message is that the system is broken and there is a big opportunity for improvement. And we are lucky with great insurance, great doctors, a resilient/optimistic patient (a true fighter) & a caregiver that cares about the details.

I cranked up the Caringbridge site for the 2025 event a few weeks ago. Short version was there was no one in the ambulance or in the ER that thought she would survive the day. She did, but suffered acute kidney injury due to the sepsis and more pneumonia. It took 9 days for the kidneys to turn around and now 5 weeks later her kidneys have returned to normal function and I get to administer IV antibiotics three times per day to know out the staph. She's had to learn how to walk again, growing stronger every day and will make a full recovery. For those that are curious on more details ... you can relive the adventure at these links (they ask you to donate ... don't):

January 22

January 23

January 24

January 25 - https://www.caringbridge.org/site/5d3ac3bc-f0e2-33f5-a425-9cccb6d8f377/post/bb538f1f-2b19-45b4-8b45-109f0bb64c3d

What Have We Learned?

First of all, you can be irritated/frustrated with the system but that does no good. You have to learn how to live in the system we have ... and own it. That includes knowing more than you ever wanted to know about insurance (what you have and how to get more of it), advocacy (being informed about everything and questioning a lot of things), the legal side (wills, advance directives, out of hospital directives), where your line in the sand is (regarding invasive procedures like intubation and dialysis), palliative vs hospice care, home care like PT, OT, nursing, care (we don't use it ... I don't trust it), medical supplies and much more. I need to find a forum for sharing what we've learned because I know it can help others.

Second, our biggest problem by far is how to coordinate medical care across multiple providers. In our case, it was primarily between the Austin hospital/providers and the Houston Methodist lung transplant team. I know there was some direct contact between hospitalists and the Houston team, but there are gaps that are too numerous to list where the Houston team was very confused and concerned. At the end of this note, I will copy a document that I’ve put together to help myself coordinate with the variety of providers that we deal with … because this is a HUGE problem for me … and I am an active advocate for my wife’s care.

Which brings me to the current working document that I've put together to make my life easier. It's not tied off with all the players yet, but it's a start. Feel free to give me feedback on what you've learned.

Do you have your own plan?

Coordinating Medical Care Across Multiple Providers v0.1

Introduction

For patients with complex medical conditions requiring care from multiple specialists, coordinating treatment effectively is critical. This is especially true for transplant recipients, who must balance ongoing immunosuppression management, infection risks, and organ function monitoring. This document provides strategies for ensuring seamless communication between providers, reducing medical errors, and improving patient outcomes.

1. Establish a Centralized Medical Record System

• Utilize patient portals like MyChart to ensure all providers have access to the latest medical records.
• Request that hospital systems share medical records electronically to avoid gaps in information.
• Maintain a personal medical binder (digital or physical) that includes:
• A comprehensive medication list (with changes and reasons)
• Recent lab results
• Hospital discharge summaries
• Specialist notes and recommendations
• Emergency contact information for all providers

2. Identify a Primary Point of Contact

• Designate one specialist or care team as the lead coordinator (often the transplant team for lung transplant patients).
• Ensure that local providers and hospitalists communicate major treatment decisions with this primary team.
• Ask about the availability of a case manager or nurse navigator at the transplant center to assist with coordination.

3. Use Secure Messaging and Telemedicine for Real-Time Updates

• Many providers allow direct messaging through patient portals.
• Consider scheduling virtual check-ins with the primary transplant team to discuss ongoing care and recent hospitalizations.
• Encourage direct physician-to-physician calls when urgent decisions are being made.

4. Develop a Medication Management Plan

• Work with the transplant team to create a standing protocol outlining:
• First-line antibiotic choices for infections
• Guidelines for adjusting or holding immunosuppressants during acute illness
• Emergency responses for conditions like Acute Kidney Injury (AKI)
• Carry an up-to-date medication action plan to share with all treating providers.

5. Advocate for Real-Time Collaboration During Hospital Stays

• Request that inpatient doctors consult directly with the transplant team before making significant medication or treatment changes.
• If possible, ask the hospital to schedule multidisciplinary case conferences that include transplant specialists via phone or video.
• Ensure that any medication changes are reviewed by the transplant pharmacy team before discharge.

6. Establish an Emergency Medical Action Plan

• Identify which facility is best for different types of care:
• Lung rejection or transplant-specific concerns?→ Primary transplant center
• General infections or minor concerns?→ Local pulmonologist or infectious disease specialist
• Emergency care needs?→ Nearest hospital with transplant expertise
• Keep an emergency summary document that includes:
• Key medical conditions
• Baseline lab values
• Known medication allergies and reactions
• Contact numbers for all key physicians

7. Leverage Personalized Knowledge and Experience

• Patients and caregivers often develop extensive knowledge about what works best for their specific needs. This information should be documented and communicated to all providers to ensure optimal care.
• Oxygen Saturation Measurement:?Due to Raynaud's phenomenon, it is typically very difficult to get an accurate oxygen saturation reading from a finger. An ear probe is much more reliable.
• Venous Access Challenges:?Lonna is a very difficult venous access patient. It is significantly more effective to use ultrasound-guided phlebotomy rather than standard techniques.

8. Consider a Private Care Coordinator or Concierge Physician

• If coordination remains challenging, some private physicians specialize in managing complex care across multiple providers.
• A private care coordinator can help facilitate inter-provider communication, assist with scheduling, and ensure continuity of care.

Conclusion

Managing medical care across multiple providers requires organization, advocacy, and proactive communication. By implementing a structured system, patients and caregivers can ensure all medical teams remain aligned on treatment decisions. These steps help reduce medical errors, improve patient outcomes, and relieve some of the burden on family caregivers who often serve as the central coordinators.

For patients with particularly complex cases, developing a standardized care protocol and engaging a dedicated coordinator can provide an additional layer of support in navigating medical decisions across multiple specialties.