Colette Brunelle's Lung Transplant Recovery

Thank you for stopping by and considering contributing to bringing Colette over the finish line. It has been an incredible journey and one that is inspiring to everyone. And with a little help, the final recovery can be made with less stress and more time to focus on healing.

Colette has been an active member of our community in cities across North America from Kingston, Alberta, Michigan, California, Florida, Windsor and landing in Ottawa where she, with a connection to the music community, integrated into the scene, loving every minute.

Then something changed…shortness of breath, difficulty participating in events and struggling to work.

Her lungs were failing. She was dying. The circle around her came together to support her journey as she waited for a new set of lungs – a gift – a medical miracle.

Colette had to relocate to Toronto while she waited - and waited – and waited. From January to May until the call came. Lungs! The excited across our community was incredible. But the roller coaster came down hard when the news arrived that the lungs were not viable.

Two days later, the day we all had been waiting for arrived! Viable lungs! Colette underwent life-saving double lung transplant surgery. It was successful!!

But the road to recovery is a long and expensive one. Unable to work at the job she loves, paying rent in Ottawa and Toronto has been difficult. She just needs a little support to bridge her financially until she can work again.

If you can, please consider donating. Every bit helps and Colette, a proud, independent woman has made it this far! And she will get by with a little help from her friends.

Colette’s Own Words – Her Journey

I am a 64 year old single female living in Ottawa Ontario. I have a grown son who lives near me and a large network of family, friends and colleagues throughout North America. I consider myself to be a dedicated professional, currently on medical leave from a job I love as Director of Finance handling the finance and administration of Longwood Building Corp and its subsidiaries. I lead a full social life. I love sports, cooking, and live music. Life was good until I discovered I was dying.

Diagnosis: ILD – Interstitial Lung Disease (Pulmonary Fibrosis) a degenerative lung disease for which there is no cure.

2020 and 2021 had 3 hospital stays and caused by lack of oxygen. During the 3rd stay the attending physician suggested the possibility of a lung transplant to save my life.

My journey is outlined here:

Past – How I got here

2018 – 2019

Noticed reduction is stamina and ability to walk any distance without becoming breathless. Football and hockey games were becoming difficult to attend

2020

Shortness of breath increased, and I was referred by my family doctor to a respirologist. In mid-July I went to hospital with shortness of breath and was sent home. Later that week I again went to emergency and stayed 10 days to return home with oxygen set up and the respiratory testing began to find the cause.

2021

Unknown condition continued to advance. Oxygen requirements increased and was admitted to hospital for 10 days in August. Diagnosed with ILD – Interstitial Lung Disease and it was suggested to contact Toronto General Transplant – University Health Network. Let the Testing Begin!

2022

Lung Transplant pre-assessment. Virtual appointments outlining required tests and process to determine if candidate for possible transplant. March was 1st meeting in Toronto with Transplant Doctor. This appointment outlined the parameters for getting “listed” for transplant. Lose a minimum of 100 lbs to have a bmi of 25. Prepare for testing in both Ottawa and Toronto.

The disease is progressing.

2023

I am continuing to work full time. My oxygen requirements are increasing. My ability to handle daily functions is diminished – no cleaning, laundry, meal preparation. Thank goodness for the wonderful support of friends and family (helping with the day to day and getting me to appointments. Testing, testing and more testing.

November – Stopped working and went on disability

December – Toronto testing with Transplant team and they indicate being put on the wait list is imminent. Look to secure living arrangements in Toronto (must be within 2 hours of hospital to be listed).

2024

January advised that I am ready to be listed. January 23 move to Toronto and am placed on active Transplant Wait List – Level 3 (highest priority). Attend physio therapy 3 times weekly to gain strength to survive surgery. Continued regular testing. Disease continues to progress.

March/April – Oxygen requirements increased to the point where the level required could not be supplied at home. April 12th admitted to hospital to handle oxygen requirements. Testing and physio continued.

May 3 – Call to transplant – false alarm (lungs were not viable)

May 5 – Call to transplant

May 7 – Received Double Lung Transplant Surgery!

Post Transplant Concerns

Post Operative – Double Lung Transplant May 7, 2024

30 Days Post-OP - Toronto

Weekly

60-90 Days Post-OP – Toronto:

Release to Ottawa with favourable testing and no rejection.

3 – 6 Months Post-OP – Ottawa:

7-9 Months Post-OP – Ottawa:

10-12 Months Post-OP – Ottawa:

13-24 Months Post-OP – Ottawa:

4 – 12 Months Post -OP – Travel Appointments:

Need for Assistance – until I can return to work

Probable return to work spring 2025 – or prior if work at home.

Giving Back

Organ Donor Awareness

Eventually, I would like to organize a charity event in my Ottawa Community highlighting the need for organ donors. The wait list is long due to lack of participation. The percentage of donors is based on the number of people who have actively been placed on the “wait list”. As of June 7, 2024, there were 1,321 people waiting for various transplants. Only 1 in 3 Ontarians are listed as organ donors. Public Awareness is key.

Patient Advocacy Non-Profit

One of the hardest things to do was navigate the Transplant System Portal. Pre-assessment, Assessment, Required Testing, Waiting List Placement, Level on Waiting List, Re-location, forms to complete, Support Person designation. There are many moving parts and as the patient you are probably not at your best critically thinking, maybe your support person is a relative that has no experience navigating and scheduling tests and appointments. Some are virtual, some are in person. My experience was when I finally got the list of tests from the Transplant Team, it took 18 months to get the testing done in Ottawa. Then the tests were too old. I advocated for myself and had I not done so, I would not have finally gotten listed.

After I relocated to Toronto, I met many transplant patients willing to share their stories. Some were like me – waiting for a transplant, others had their transplant and were in recovery. I met a woman who lost her husband to the same disease I had – sadly he succumbed to the disease before he could receive a transplant. I ended up teaching several people how to navigate the system, check their test results, track the bloodwork trends and do the required reading. Transplant team members are available for appointments and questions; however, these people are busy and there needs to be someone who understands the process to assist and advocate for the patient and their support person.

Even as a professional, I found some things confusing, cancelations, rescheduling of testing and appointments, virtual calls. It’s quite a lot to manage and I found I needed to be on top of things and get things moving along for myself. I found that each Transplant Team member has their own task or area of expertise, and the information is shared between Team Members, but I still needed to ask a lot of questions and coordinate the Team Members myself (often directing them to the notes of another team member).

Imagine doing this when you do not have administrative experience or lack computer skills. Someone needs to help the patient get “their next steps information”. As the patient, you can’t just wait for the Team to contact you. The patient needs to take control of their own health care.

I taught several people how to navigate the portal and use it to their advantage. See their test results, assist with questions to have answers in a timely manner. I made several spreadsheets which included:

I think any patient could benefit from a service like this. I intend to start my research into creating this program.

Thank you for taking the time to read this and your support.

Gratefully,

-Colette