“This new journey I am now on is only possible because of some brilliant people.”

Elaine Desnousse, 33 years old, from the Seychelles islands, was born with a respiratory disease diagnosed as bronchiectasis when she was a teenager. With repeated infections over the years, the disease was progressive and led to respiratory failure. This affected Elaine’s wellbeing and quality of life, which meant she would ultimately need a lung transplant; without it her future was bleak—her life ending sooner than expected. Unfortunately, all organ transplantation comes with significant financial barriers, and without financial support, this life-changing surgery is unreachable.

It was not an easy decision for Elaine to ask for help, but she knew that lung transplantation was her only option for a better life—she asked for help. After some of her friends came forward with donations, some suggested crowdfunding. Elaine was ever so nervous and uncomfortable with the idea at first. Still, she again reminded herself that this might be her only chance to live a normal life—she set up a Facebook page asking for help, and her cousin created a gofundme page. Despite all the challenges, both her lungs were replaced with those received from a donor. Cosmocreole actively promoted Elaine’s pages before her surgery, so we caught up with Elaine, who is now back in Seychelles after a successful surgery in India at the Global Hospital. Here’s Elaine’s journey to a new lease of life and breathing easier than before.

Generousity of Friends, Family and Strangers

To my surprise, a lot of people came forward with donations. Family, friends, work colleagues and even people I have never met. However, I was more overwhelmed by the fact the people offered their prayers individually and in church groups. I’m aware that until today, some people are still offering prayers, and I am eternally grateful. 

Decision on the Lungs Transplant and the wait

There were times in my life when I knew I needed a transplant, and other times I was unsure if I wanted to do it given the risks involved. It took me a while to decide on it, and during that time, I did lengthy research and prayed for guidance and strengthened my faith. After the decision comes the wait for a suitable donor.

The wait was around seven months long, which is a month more than the average waiting time of three to six months. During this period, several alerts for donors came through but did not materialize due to extended criteria (donors were over the age of 50/60 and/or had certain illnesses). I also had a few alerts that I needed to be on standby while the transplant team of doctors decided if the organ was suitable. I also had a dry run (when you get the call for a transplant but leave the hospital without the new organ) a month before my donor alert came through. 

The Call

It was Saturday, 17th December 2022, and at 2:32 pm when my surgeon called and asked how I was feeling and when I responded that I was feeling ok and told me that he thought today was the day. My heart skipped a beat, and I started to feel anxious. As I ended the call and started to prepare myself for the hospital, I was praying to God to strengthen my faith, to give me courage and strength and as I prayed, my nerves calmed down a bit, and I was contented in faith and hope that I had been blessed with a donor. I remember even mumbling to myself, “This is really happening!” 

During admission for the surgery, my surgeon came by to explain the procedure regarding harvesting the donor’s lungs (organ harvesting is the surgical procedure that removes organs or tissues from a donor). Before he left to harvest the lungs out of state, he said to me, “I will see you on the other side.” with these words, I was confident and comforted that I’d made the right choice. I was at the right place at the right time and in the care of the best team of healthcare professionals —a team of doctors from Gleneagles Global Hospitals, Parel, in Mumbai, India.

Pre-surgery

My journey in Mumbai started when I was hospitalized for two weeks in April 2022 to undergo a transplant workup. They ran multiple tests to evaluate the condition of the lungs and heart, muscle strength and endurance and overall health. From the workup, I was then registered with the Organ and Tissue Transplant Organization to be waitlisted for the donor organ. While waiting for a donor, I had to follow a pulmonary rehabilitation program of various breathing, cardio fitness and muscle strengthening exercises, a strict high protein diet and diligent precautionary measures to avoid infections, which is the most important part of my journey to date. 

After the call, I had half an hour to reach the hospital for the admission procedures, and my anxiety was kicking in again. I had to ride to the hospital in a cardiac ambulance as the anxiety I had was causing me
palpitations and oxygen desaturation, where my portable oxygen concentrator was insufficient to sustain my breathing at the time. 

At the A & E, after the prep, around 8 pm, I was wheeled to the cardiac operating theatre; unable to hug my parents due to protocols, we bid goodbye, and we had no doubt or fear of what lay ahead of us. Instead, we put our faith in God and the transplant surgery team waiting for me inside. I remember having a last conversation with my anesthesiologist in the theatre as she made me comfortable on the operating table.

The Surgery and Minor Setback

My parents told me that my surgeon returned with the organ around 4 am the following day for the implant. It would seem that other surgical procedures and supportive treatments were ongoing before the actual transplant. According to my parents, my surgeon came out of the Operating Theatre at around 8:30 am smiling to inform them that the lungs had already been transplanted and I was fine. However, he had encountered an abnormality with my heart, and he told them there was nothing to worry about as it was fixable. He later explained that I had just one vein connected to the upper chamber of my heart instead of the normal two (a congenital heart defect known as an anomalous pulmonary venous connection)

 The surgery took a little over eight hours. The next thing I remember is the ICU and a doctor shining a light in my eyes, asking me to say hello to my parents before they sedated me again. I remember trying to open my eyes and lifting one finger – my hands were tied up in bandages to prevent me from removing any tubes and wires. I remember hearing the doctor say I was reactive to the light, which was a good sign. After that, I was completely out for two days, and when I woke up, I found myself intubated with drainage tubes, nasal feeding tubes and all sorts of other tubes/wires hooked to a monitor and machines. I made it. I was grateful.

Post Surgery

On the third day after surgery, the Extracorporeal Membrane Oxygenation (ECMO) machine – a supportive heart and lung machine was removed, and I was extubated. I spent two weeks in ICU and a further two weeks in isolation. During that time, I had medications, multiple regular blood tests, arterial blood gas tests, and radiological tests such as X-rays and bronchoscopies were ongoing. In the first few days, I was put on a non-invasive ventilator to help my breathing and reduce the high level of carbon dioxide in my system while also increasing my oxygen levels. This was done intermittently between minimal oxygen support until they were tapered off and I was completely breathing on my own. The feeding tube was also removed after a few days as I could properly swallow fluids and soft food. This was where I had to learn how to
swallow again.

My pulmonary rehab also continued even in ICU, whereby I was mobilized by my physiotherapist and the ICU nurses and helpers to sit up and learn how to walk again around the room and hallway. The rehab progressively moved to cycle and doing light weights. My recovery also included daily breathing exercises with and without a spirometer, which was crucial to monitor lung function. My first stage of recovery time would have been less, but I experienced two setbacks; a pneumothorax (air around and outside the lungs) which had to be drained, and a thrombus (a blood clot that forms inside one of the veins or arteries) which was immediately dealt with. 

Another Chance for Normal Life

I am still in recovery; at this stage, I am out of the hospital, but I will be taking lifelong medications, following a strict diet regime, exercises, and precautionary protocols to avoid any infection and organ rejection. All has been well so far with regular reviews and tests, except for the everyday challenges of being on
immunosuppressants. I strive daily to make every effort possible to give myself and my donor another chance at this life-continue with my journey. 

I am grateful for the fantastic medical team that looked after me. All my pulmonary rehabilitation pre and post-surgery and surgery took place at Gleneagles Global Hospital, Parel, in Mumbai, India. It is a chain of hospitals in India, now part of the Gleneagles hospitals across Asia. I had the privilege of meeting its CEO, Dr Vivek Talaulikar, who led the staff and healthcare professionals who visited me in the ICU. 

This new journey I am now on is only possible because of some brilliant people -my surgeon Dr Chandrashekhar Kulkarni – Senior Consultant in Cardiovascular Thoracic Surgery (CVTS); my pulmonologist Dr Samir Garde -Director of Pulmonology, Interventional Pulmonology and Lung Transplant, my consultant in cardiac anaesthesiologist Dr Khushboo Dharmani and my Nephrologist Dr Shruti Tapiawala who were my leading doctors amongst so many others, all for whom I have the highest respect and regard. So I was confident in trusting them with my life. And last but not least, my physiotherapist, who has stuck by my side, motivated me, pushed me to my limits to do well in my rehab program, and has been a great friend I will forever cherish.

Gratitude

I’m eternally grateful to the almighty God for his unconditional love, guidance, courage and strength.

I give thanks daily to my donor and his family for the ultimate sacrifice to gift me a new lease on my life. This is something very common in other countries but untapped in Seychelles. Thank you to all
organ donors and their families for their selfless and noble act of organ donation; because of them, many lives are saved.

I am also immensely grateful to my parents and immediate family for their unconditional love, unwavering care and support since I was diagnosed with respiratory failure. They have been by my side through it all, and it has not been easy for us. To my extended family, whom I have had to sacrifice by isolating and distancing myself from over the last five years, especially during Covid 19, I’m thankful for their support through my journey. To my tiny circle of friends, I’m blessed to have had your support through a distance to check in occasionally and keep me sane. To my parents’ friends who have also shown their support, I thank you, for they were also not alone in this journey. To my employer and colleagues, I give immense thanks for the support in allowing me the time and space to get the help I needed and to heal so that I can
rejoin you- healthier and stronger to continue my dedication to my service.

Today I am able to tell my story of how I am overcoming my health challenges and what I’ve been through. I only hope it will be someone else’s inspiration to push forward for better health and wellbeing despite the challenges that they may face. My story has already inspired two individuals who were initially hesitant to proceed with their transplant but now have decided to undergo theirs. 

I also wish to thank Cosmocreole for sharing my story once again.

Elaine is more than happy to answer any questions regarding transplantation, and she can be reached through her social media.