Orla Tinsley: It was important to live, even though I was dying

The morning of my transplant I was lying in the ICU at New York Presbyterian Hospital in Washington Heights above Harlem in New York City. Six days earlier, before the first snowfall, I had spent the day telling my mom I was mostly fine despite the fact that when I walked the couple of metres from my bedroom to the kitchen my muscles jerked in a throwback to the Saturday Night Fever hand-jive dance move.

I wasn’t trying to dance but my body was screaming at me “High alert! Out of control!”

I was good at keeping it together and my mother, with her unique blend of medical knowledge and mother’s intuition, knew that I needed to be in hospital.

I knew I was dying at this point, after nine months waiting, and I was hoping for a viewing of Muppets Christmas Carol before going back in to the hospital.

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I remember being told years earlier that the universal rule is that you have to be sick enough to need a transplant but well enough to recover

On December 15th, 2017, I had been on the transplant list for nine months and I had been developing this practice that the artist Laurie Anderson calls "learning how to feel sad without being sad".

It was important to me to remain joyful and positive throughout my death while also remaining hopeful about the possibilities of life and the reality of death.

My CO2 had started to climb in symbiosis with my declining lung function some months before. The allocation of lungs in the United States is governed by an organ donor database called United Network for Organ Sharing.

If you qualify to be tested as a transplant candidate, the responsibility to stay well enough to undertake the surgery successfully is vital.

I remember being told years earlier that the universal rule is that you have to be sick enough to need a transplant but well enough to recover.

Once the series of tests, which are classified as “a battery” of tests, is done the language relating to the experience is formalised. You are a transplant “candidate” and your place on the national list is determined by a “score” created by an algorithm.

Every few months or more when you are tested the results are placed in the system to record the new score. The higher the score, the sicker you are and this means you are closer to a transplant – if a match comes on time – but also closer to death.

Transplant demands a psychological shift in perspective and an understanding that patience and action work together. The idea for me was to become the tortoise and not the hare, so that even when I could not move forward I made moves at my own pace and believed in the ongoing motion of life. It was important to me to live even though I was dying, because this is the eternal experience for us all. My time was just approaching faster.

I moved from the ER to the ICU within a couple of hours and I could sense what was coming next. My friend Josie in the UK had had her transplant months earlier and she was an incredible support to me. One of the most remarkable gifts of this complex journey is the connection to community that occurs and the generosity of spirit from different communities you are part of.

I listened to as many stories as possible and when I learned about “extracorporeal membrane oxygenation” – which pulls the poisonous CO2 from the body and flushes it through a machine, churns it, and repopulates your body with clean O2 – I felt instantly that I would end up on that.

I said to my mother, 'okay, I know I'm dying now'

It was the most extreme form of life support available.

My decline was not a standard one. My lung function remained slightly higher longer than expected, but my lungs bled so frequently that lung function and energy were being siphoned off. If I had tried to leave the US, even through a medical evacuation, I would not have made it to Ireland.

The extensive damage in my lungs and the life support machine meant that I had to stay lying down while we waited. Pools of water had been rising in my lungs, and soon began to gather at my ankles stretching the skin across my legs out so they looked like upside down soft drink bottles pinched at the ankle.

That was kidney failure. I knew this because I had seen enough of my friends go through it. It was what happens immediately before death.

I said to my mother, “okay, I know I’m dying now” and she said, with all the strength and determination that only a mother with a background in ICU nursing can instil:“No, you’re not dying.” I chose to believe her.

Miracles

One of the miracles of that moment was the social worker, a beacon of light, realism and positivity, said: “The lungs are on their way – we just don’t know when they’ll get here yet.”

The other miracle of that moment were my loved ones. My best friend, Quentin, a family member at this point really, stayed by my side with my dad, my mom and my brother.

And then there was everyone else. There was the commitment, kindness and diligence of the staff at the hospital across all disciplines we came across. They knew the gravity of the moment and were supportive, sensitive and present. Another moment was the embrace of love that I felt, finding its way across the ocean from home, funnelling down to my heart.

The phrase “embrace of love” had lodged in my heart the first time I heard Colm Tóibín use it, and it kept bobbing up and holding me close. Through the channels of social media I accessed on my phone, a type of meditation was facilitated. It was a connection to the love, support and endless words from people I had never met, from people I had met, from people I knew well and from strangers who would become friends.

I began to remember the time almost a year earlier when my mom and I went to see the Agnes Martin exhibition at the Guggenheim museum and how I had gone back as often as possible just to gaze at her paintings: Friendship and Loving Kindness. I began to focus on each person I loved and every person I was connected to at that present moment.

The donors

I was not in pain and my mind was clear. That focus kept me there. I thought about the donors I had almost met and their families, and I thought about the people across Ireland and the United States who supported me. I thought about my teachers, my classmates and my friends. I thought about the woman who held the lift in the Metropolitan Museum open for me the time I was trying to roll my wheelchair in. I thought about my beloved cat.

I thought about my friends who had died from this same illness while we fought for better services. I thought about their families. I thought of how strong they were.

I don’t know what time they told us lungs had become available. I had six false alarms over seven months so we knew that this confirmation could take up to 12 hours. My dad and my brother went home to power nap, and my mom and Quentin took refuge in some Irish food at Coogan’s restaurant beside the hospital.

I was fasting, and every so often an unnaturally intense craving for a toasted-everything bagel with cream cheese, red onion and lox ghosted across my belly. The oxygen continued its familiar whirr, and nurses popped in and out to check on me.

I thought about how lucky I was to be part of something I believed in throughout my life and how in this moment that mattered even more than I expected it too. I thought about how lucky I was to be in New York, to have had this opportunity, to have made it to Columbia University and met the most incredible friends and teachers.

My beautiful family – including Quentin, of course – came to see me three times on Christmas Day, taking turns

I know I had been alone a short while when some team members came in to say it was looking good. A feeling like an electric shock rushed through my body. I called my parents but no one answered. After 20 minutes I established they were probably napping and, because of the delicate time frame between organ procurement and donation, a team member had arrived to give me my first dose of anti-rejection drugs.

I kept calling the phones, and then Quentin answered. I don’t remember entirely what I said but it was short and to the point. My mother and Quentin arrived in the door as they were prepping the trolley to take me away.

My dad and brother, after watching me round the clock and enduring long flights to get to me, were asleep in the apartment but rushed out the door the minute they heard.

It takes a village to get to and to recover from a transplant, and I firmly believe the level of support that someone has changes the outcome for that person. The truth is, though, when you are wheeled into the operating room, you are alone.

I kept talking to the surgical team until I got knocked out, and I asked if someone would please take a picture of my old lungs coming out. They had held me up for 30 years and I wanted to honour them by keeping an image to remind me of how well we worked together and of how lucky I am.

Phenomenal

When I woke up in the ICU on December 23rd, the nurses were phenomenal, and within a few hours an iPad playing Christmas songs was in my room. It is impossible to describe the exuberant positivity and zest for life that emanated from every staff member I met there. My beautiful family – including Quentin, of course – came to see me three times on Christmas Day, taking turns.

Somewhere after lunch the ICU tech decided that my new lungs were breathing well on their own and we agreed to take me off the ventilator. I sent my family out of the room for this brief moment, and when they returned, moments later, I was breathing on my own. O2 was still used for a while because, like anything in the body, the muscles and patterns of the body need to acclimatise.

Physical therapy helped me learn to sit up again and then to walk. My yoga instructor had spent time with me the few weeks before my transplant, helping me figure out how to get up from any position on the floor, and my physical therapist taught me about preparing the ankles and legs to walk again. The physical therapy and occupational therapy teams in the hospital were exceptional.

The journey to transplant and the journey back from it is long. The 10 months I had pulled a rollator behind me while on oxygen 24/7 had taught me to practise being more like the tortoise than the squirrel. I was concerned with carrying what I needed and shouldering the weight without dropping it.

The first year after transplant is the most dangerous but there is a never-ending jigsaw puzzle of commitments that come with this gift of life.

Donor lungs

When cystic fibrosis is your starting point, it is surprising how much easier it is to hook to the transplant care pattern. The tanks, medication and responsibility I shed from my former lungs are replaced with new responsibility to my donor lungs.

I want to live a life that would make my donor and her family proud of me. Every month on the 21st I give thanks that I am still alive, but I hold in my heart the reality that my donor lost her life and that what my family gained her family lost. In a way transplant is the ultimate legacy a person can leave and the greatest gift of community service we can give.<.

In the ten days after my transplant the Irish Kidney Association told me that 1,100 people had signed up to be organ donors. Messages flooded my timelines and people began sending me pictures of the donor cards they ordered and signed. I am in awe of all of those people..

It surprised me how many people had already thought of becoming an organ donor but had not managed to pick up a card, or did not know they could swipe in the Health app on their phone or tick a box on their driver’s licence..

I have taken part in a documentary for RTÉ because I believe organ donation is the ultimate form of giving – it costs us nothing but gives so much. In Ireland we currently have an “opt-in” system, but if you do not let your family know your wishes then your family can refuse to donate your organs when the time comes. This is understandable because an overflow of emotions including shock and grief can take over..

If we had an “opt-out” system in Ireland, where people were already automatic organ donors but could choose to opt out, and if education on this topic became mainstream, then we could have a deeper relationship with the idea, and more of us might decide to save lives.

Transplant is not a cure for cystic fibrosis but my transplant means that the part of my CF that was threatening my life is gone for now. With new life comes new responsibility and I take immunosuppressants daily which keep my body from rejecting the new lungs but also mean I am more open to infection.

I still have CF in other parts of my body because the problem is with the faulty gene and not just with the lungs.

However the journey, the wait and the quality of life I have now makes it all worthwhile. It is a huge privilege to be here on this earth.

Orla Tinsley: Warrior is on Monday, RTÉ One at 9.35pm